PSYCHO-SOCIAL SUPPORTS AND FAMILY INTEGRATION AS DETERMINANTS 
OF PALLIATIVE CARE OF TERMINALLY-ILL PATIENTS IN UNIVERSITY 
COLLEGE HOSPITAL, IBADAN NIGERIA   
 
 
BY  
 
 
 
Mercy Olufunmilayo SANDA 
RM, RN, RPHN, B.Ed, M.Ed (Ibadan), FWACN.  
 
 
A Thesis in the Department of Adult Education  
Submitted to the Faculty of Education in partial fulfilment of  
the requirements for the Degree of  
 
DOCTOR OF PHILOSOPHY 
 
of the  
 
UNIVERSITY OF IBADAN 
 
 
Department of Adult Education  
University of Ibadan 
Ibadan         May, 2015 
 
 
 
 
 
 
 
CERTIFICATION 
 
I certify that this work was carried out by Mrs. M.O. Sanda (Matric No: 105787) in the 
Department of Adult Education, University of Ibadan, Ibadan, Nigeria under our supervision. 
 
 
 
 
 
.................................................    ........................................... 
           Supervisor        Co-supervisor 
 Prof. Deborah A. Egunyomi        Dr. F.A. Okanlawon 
Department of Adult Education        Department of Nursing 
 University of Ibadan, Nigeria            University of Ibadan, Nigeria 
  
ii 
 
 
DEDICATION 
  
This research is dedicated to the most Sacred Heart of Jesus who has been the source of 
my strength from ages past. 
 To my late parents, my siblings, my children and grandchildren for their understanding 
and encouragement, and the souls of the departed faithfuls. 
  
iii 
 
 
ACKNOWLEDGMENTS 
 
 The grace of God that surpasses all human understanding has brought me thus far and so 
his presence and enablement cannot be quantified. May his name be praised now and forever. 
His faithfulness has brought me thus far in the pursuit of my Ph.D programme. In you oh Lord, I 
place all my trust. 
 I would like to acknowledge and thank a number of individuals that have supported me 
during the period of writing this thesis. My immense gratitude goes to my Head of Department 
and supervisor Professor Deborah Egunyomi and Co-Supervisor Dr. F.A. Okanlawon and my 
mentor Dr. K.O Kester for being role models in the paths of ensuring hard work and excellence. 
They have been my mentors whose patience, guidance and cooperation in bringing this thesis to 
this level cannot be overemphasised. You are highly appreciated. 
 I am grateful to all the lecturers in the Department of Adult Education; Prof. M.O. 
Akintayo, Dr. A.A Sarumi for their encouragement and advice, Drs. P.B Abu, K.O Ojokheta and 
O.E Olajide for their additional supervisory support throughout the programme. I am also 
indebted to Drs. Omobola Adelore, I.A Abiona, T. Akanji, Olabisi Oladeji, Medinat Momoh, 
Stella Odiaka and C.O Omoregie for their various forms of assistance, contributions and 
criticisms. You are all highly appreciated. 
My special thanks goes to Dr. J.K Mojoyinola of Social Work Department for his 
assistance and guidance in ensuring that this thesis was properly done. He was always ready to 
assist whenever I needed clarification and explanation on this work. Dr. A. Jimoh of Guidance 
and Counselling is also appreciated for his encouragement, Dr R.O. Oyelami of University of 
Lagos for your assistance (you have been wonderful), Mr. Benson of LARIS Department, I say 
thank you sir for your brotherly care and contributions to ensure orderliness in this work. I 
appreciate Prof. O. Soyannwo for her assistance in allowing me access the palliative care library 
for some of the materials used for literature review of this work. God bless you ma. I will forever 
remain grateful to Professor J. Lawani for his assistance and fatherly role throughout my 
academic pursuit. Also to Grandma Olurin, for her encouragement, may God grant you more 
years in good health ma. 
iv 
 
 
My appreciation goes to the patients and their families who participated in this study for 
allowing me into their lives, sharing in their burden and for even making time to respond to 
various questions and interview sessions, despite being in the most traumatic and trying period of 
their lives. May God bless you all. 
The health professionals that participated in this study made me highly humbled and the 
Research Assistants have been very wonderful, Pastor Odewumi has been of immense assistance 
in the analysis of data. 
My gratitude goes to all non-academic staff of the Department of Adult Education; the 
secretary, Mr. Biodun Najim, Mr. Sunday; my colleagues, Mrs, C. Oluwamotemi, Mrs. Funke 
Ogidan, Mrs. Biola Omokhabi, Mr. Godwin Odok, Miss Funmi Ojo and others. Thank you for 
your assistance, encouragement and spiritual support. 
I thank all my family members my siblings both far and near for their prayers, support 
and encouragement. 
I will never forget Mr Abiodun Aina and Professor Gboyega Aina for ensuring relevant 
internet literature on the study gets to my mail whenever they stumbled on any God bless you 
Mr. Niyi Makinde has consistently been of immense assistance, you will be divinely favoured. 
Thank you, Deaconess Olajide for your prayers, Miss. Kehinde and Ayoyinka for painstakingly 
typing and retyping this thesis several times: (thanks for your time and patience). 
Oluwaseyi, Oluwamayowa, Oluwafemi, Folahanmi, Eniolorunda and Morounfoluwa, 
accept my sincere appreciation for your understanding patience and encouragement, God bless 
you all. All will surely end in praise and thanksgiving.  
  
v 
 
 
ABSTRACT 
Orthodox medical practice has brought about access to diagnosis and modern healthcare through 
the palliative care system to treat the terminally-ill, thereby improving their quality of life. This 
treatment of the terminally-ill utilises medical diagnostic interventions with little or no 
consideration for psychosocial supports and family integration which are at the core of the 
palliative care system. This study, therefore, investigated the psychosocial supports (diversional, 
behavioural, emotional, counselling services, companionship, spirituality, rehabilitative supports 
and regular visitation) and family integration (financial assistance, life-style modification and re-
allocation of roles) as determinants of palliative care of terminally-ill patients at University 
College Hospital, (UCH), Ibadan, Nigeria. 
The study adopted the survey research design. The UCH was purposively selected. Proportionate 
and stratified random sampling techniques were used to select 587 respondents, namely, 183 
health workers (50 doctors, 83 nurses, 24 physiotherapists and 26 social workers), 202 
terminally-ill patients and 202 family caregivers from purposively selected eight wards and three 
out-patient clinics. Three instruments were used: Psychosocial Support Scale (r=0.67), Family 
Integration Scale (r=0.65) and Palliative Care Services Scale (r=0.71). These were 
complemented with ten sessions of in depth interview with the health workers, terminally-ill 
patients and family caregivers. Two research questions were answered and three hypotheses 
tested at 0.05 level of significance. Data were analysed using descriptive statistics, Pearson 
product moment correlation, multiple regression and content analyses. 
The respondents were 218 male, and 369 female with age of 38.54, ±SD=9.78; with 202 
terminally-ill patients; cancer (86), cardiac problems (42), neurological disorders (33), end stage 
kidney problems (22) and HIV/AIDS (19). Psychosocial supports and family integration 
significantly correlated with palliative care of the terminally-ill (F(12.189)= 25.25, R=.79);  and 
jointly accounted for 62.0% of the variance in their palliative care. Psychosocial supports (β = 
.55) and family integration (β= .51) relatively contributed to the palliative care system. 
Components of psychological supports had significant positive relationship with palliative care 
as follows: emotional support (r=.69), diversional support (r=.54), behavioural support (r=.50) 
and counseling services (r=.45). Also, components of social supports had positive relationship 
with palliative care: regular visitation (r=.41), spirituality (r= .33), rehabilitative support (r= 
.308) and companionship (r= .066). Observed relationship among family integration factors and 
palliative care were: financial assistance (r=.65), life-style modification (r=.32) and reallocation 
of roles (r=.32). Problems facing the utilisation of palliative care system include: irregular 
training on palliative care for health workers (64.0%), problem of early diagnosis (62.0%), non-
availability of pain control medication (58.2%) and non-affordability of treatment (23.0%).  
Patients expressed anxiety over the outcome of illness, difficulty in adaptation to life style 
modification and fear of death in the face of poor patient-health workers communication.  
Psychosocial support and family integration positively influenced palliative care system for the 
terminally-ill patients at the University College Hospital, Ibadan, Nigeria. Therefore, adequate 
provision of funds, pain control medication and staff retraining are required to ensure effective 
treatment in palliative care. In addition, the terminally-ills and their family members should be 
appropriately counselled on the need for life-style modifications and role reallocation.   
 
Keywords: Terminally ill patients, Palliative care, Psychosocial supports, Family integration. 
Word count: 495 
vi 
 
 
TABLE OF CONTENTS 
Cover Page           i 
Title Page           ii  
Certification           iii 
Dedication           iv 
Acknowledgment          v 
Abstract           vi 
Table of Content           vii 
List of Table            x 
List of Figure            xii 
 
CHAPTER ONE: INTRODUCTION 
1.1 Background to the study        1 
1.2 Statement of the problem        4 
1.3 Objectives of the study        5 
1.4      Research questions         6 
1.5  Research Hypotheses          6 
1.6 Significance of the study        6  
1.7 Scope of the study         7 
1.8 Operational definition of terms       7 
 
CHAPTER TWO: LITERATURE REVIEW AND THEORETICAL FRAMEWORK 
2.1 Palliative care: conceptualization and issues      9 
2.2 Psychological support and palliative care      28 
2.3 Diversional support and palliative care      31 
2.4 Counselling services and palliative care      32 
2.5 Social support and palliative care       33 
2.6 Spirituality and palliative care       36 
2.7 rehabilitative support and palliative care      42 
2.8 Regular visitation and palliative care       44 
2.9 Family integration in palliative care       45 
vii 
 
 
2.10 Financial assistance in palliative care       50 
2.11 Physical care and palliative care       51 
2.12 Lifestyle modification and palliative care      52 
2.13 Re-allocation of roles and palliative care      55  
2.14 Centre for palliative care Nigeria       56 
2.15 Empirical studies          58 
2.16 Theoretical framework        64 
2.17 Appraisal of literature         73 
 
CHAPTER THREE: METHODOLOGY 
3.1 Research design         76 
3.2 Population of the study        76 
3.3 Sample and sampling technique       76 
3.4 Instrumentation          77 
3.5 In-depth-interview         79 
3.6 Translation of protocol to local languages       79  
3.7 Administration of instrument              80 
3.8 Method of data analysis         80 
3.9 Ethical consideration          80 
     
CHAPTER FOUR: RESULTS AND DISCUSSION OF FINDINGS 
4.1 Analysis of Demographic characteristics of the respondents:   81  
4.2  Test of contribution and strength of the relationship among  
the core variables          85 
  
CHAPTER FIVE: SUMMARY, CONCLUSIONS AND RECOMMENDATIONS 
5.1 Summary           117 
5.2 Conclusion           119 
5.3 Policy Implication of the study       119 
5.4 Recommendations         119 
5.5 Contributions to Knowledge        120 
viii 
 
 
5.6 Limitations to the Study        120 
5.7 Suggestion for Further Studies       121 
References          122 
Appendix I          130 
Appendix II          137 
Appendix III          140 
Appendix IV          142 
Appendix V          148 
Appendix VI          149 
Appendix VII          150 
 
 
  
ix 
 
 
LIST OF TABLES 
Table 4.1a:  Joint prediction of psychosocial support and family     86 
integration on palliative care of terminally ill patients. 
Table 4.1b: Relative predictions psychosocial support and family   90  
integrative care process. 
Table 4.1c:  Mean scores of the perception of Health workers on the palliative  
  care for the terminally ill patients.      94  
Table 4.2a:  Joint predictions psychological support (Diversional    99 
support, Behavioral support, counseling services, emotional  
support) on palliative care process of terminally ill patients. 
Table 4.2b: Relative predictions of Diversional support, Behavioral    100 
support, counseling services emotional support and  
educational counseling on palliative care process. 
Table 4.3a:  Joint predictions of social support on palliative care process  102 
Table 4.3b: Relative predictions of social support (companionship,   103 
spirituality, rehabilitative support and regular visitation on  
palliative care process. 
Table 4.3c: Correlation matrix showing the relationship between    105 
social support (companionship spirituality, rehabilitative  
support and regular visitation on palliative care 
Table 4.4a:  Joint prediction of family integration (financial assistance,    106 
life style modification and re-allocation of roles) on palliative  
care process. 
Table 4.4b: Relative predictions of family integration (financial assistance,   106 
life style modification and re-allocation of roles) on palliative  
care process. 
Table 4.4c: Correlation matrix showing relationship between     110 
family integration (financial Assistance, life style  
modification and reallocation of roles) on palliative care support  
and family integration) on palliative care 
Table 4.5a: Mean scores of the perception of terminally ill patients psychosocial      112 
Table 4.5b: Mean scores of the perceptions of the family caregivers on palliative 112 
x 
 
 
care of the terminally ill patients    
Table 4.5c: Mean score of the perception of Health Workers on the palliative        116  
care of the terminally ill patients. 
  
xi 
 
 
LIST OF FIGURES 
 
Figures 4.1:  Bar chart showing the distribution of the respondents by age.  81 
Figures 4.2:  Bar chart showing the distribution of the respondents    82 
by marital status 
Figure 4.3:  Bar chart showing the distribution of the respondents    83 
by gender 
Figure 4.4:  Bar Chart showing the distribution of the respondents    84 
by religion. 
 
 
xii 
 
 
CHAPTER ONE 
INTRODUCTION 
1.1 Background to the study 
Terminal illness is a medical term popularised in the 20th century to describe 
a disease that cannot be cured or adequately treated (Glare, Virik, & Jones, 2003). This term is 
more commonly used for progressive diseases like cancer, complicating heart disease, end stage 
kidney disease, neurological problems and HIV/AIDS (Pass, 2000; Morrison, 2006).  
In traditional African societies, including Nigeria, health and disease are not only closely 
related, but also have religious and cultural contexts (Udoh, 2002). Among indigenous spiritual 
deities in the African societies, there is a prevailing belief about humanity‟s relationship to the 
supernatural forces, which have implication for health condition of the individuals (Udoh, 2000 
& 2002). For instance, it is believed that the state of terminal illness in an individual is caused by 
the anger of the gods, the actions of wicked persons, or the anger of the displeased ancestors. 
Within this context, terminal illness can be caused by natural, supernatural and mystical factors 
(Boston 1984; Udoh, 2000). Natural causes are diseases brought about by natural factors and 
invisible media (Erinosho, 1989) while the supernatural causes are diseases originating from the 
actions of evil persons, witches and sorcerers. Mystical causes are brought about by 
dissatisfaction of ancestors and deities (Udoh, 2000) and they are directed against individuals, 
families and communities (Oke, 1980; Erinosho, 1989). 
 Udoh (2002) explained that illnesses such as cough, scabies, small pox and epilepsy are 
considered to be of natural origin among the Igbo people of Eastern Nigeria. The Igbo people 
also believe that these diseases may be caused by invisible elements. The Yorubas of Western 
Nigeria believe that diseases such as cancer, small pox, measles, hepatitis, tuberculosis and 
mental illness attributed mostly to unnatural causes, evil persons, aggrieved deities or ancestors 
(Erinosho, 1987). As a result of these traditional beliefs, terminal illnesses are generally believed 
to be due to supernatural and mystical causes (Lucas & Hendrickse, 1990). Hence, there is the 
need for a traditional healthcare delivery system that is utilised in the care of patients with 
terminal illness. 
 The traditional medicine system which is the same as folk medicine is popular in the 
rural communities of Nigeria (Oke, 1989; Udoh, 2002). Given the consultative pressure from 
orthodox medical practitioners, its utilisation has not earned widespread government acceptance 
and recognition (Anderson, 1998). The main objection to traditional or folk medicine is based on 
1 
 
 
personal and professional interests of orthodox medical practitioners, who have argued that 
indigenous medical practices are crude and unscientific (Sorochan, 1998).  
Deducing from the above argument of the orthodox medical practitioners, it is, therefore, 
an accepted knowledge that the modern healthcare delivery system provides the best medical 
intervention, competence, state of the art physical assets and infrastructure to attend to terminal 
illnesses. However, there are some terminal illnesses that are fatal in their complexity, 
orientation and conclusion. They will surely lead to death, no matter the level of orthodox 
healthcare attention provided. The conclusive outcome cannot be reversed (Balogun, 2007). Such 
illness is reasonably expected to result in the death of the patient within a relatively short period 
of time.  
In popular use, indicates a disease which will eventually end the life of the sufferer. A 
patient who has such an illness may be referred to as a terminal patient or terminally ill or 
simply terminal. Often, a patient is considered to be terminally ill when life expectancy is 
estimated to be six months or less, under the assumption that the disease will run its normal 
course (Borneman, 2004). A patient may be considered terminal, this is not a guarantee that the 
patient will die within six months (Taylor, 1988).  Similarly, a patient with a slowly progressing 
disease, such as AIDS, may not be considered terminally ill because the best estimates of 
longevity were greater than six months. However, this does not guarantee that the patient will not 
die unexpectedly early (Grealish, Lomasney & Whiteman, 2000). 
  The medical personnel and their supportive staff do not give up and ignore or suspend the 
care given to the terminally ill (Collin, 2008). The patient is therefore transitioned into palliative 
care. Palliative care is a specialised care, focused not on cure but on the pain, symptoms, stress 
and quality of life associated with serious illness (Seymour, Clark & Winslow, 2004). World 
Health Organisation (2002) defined palliative care as an approach which improves the quality of 
life of patients and their families facing the problem associated with life threatening illness, 
through the prevention, and relief of suffering by means of early identification and impeccable 
assessment and treatment of pain and other physical, psychosocial and spiritual problems. 
Soyannwo (2004) submits that palliative care is “the active holistic care of patients with 
advanced progressive illness, management of pain and other symptoms with provision of 
psychological, social and spiritual support”. Palliative care is designed to provide the best quality 
of life for patients and their families. Hence, it is Soyannwo‟s contention that palliative care 
should be provided by two categories of health and social care professionals. Those providing 
2 
 
 
day to day care to patients in their homes and hospitals and those who specialise in palliative 
care (consultants, clinical nurses, social workers, physiotherapists, chaplains and other religious 
leaders). The patient feels better, feel supported and have more control over his/her care. 
Palliative care improves the quality of life for both patient and family. Doctors, nurses and other 
specialists work together with the patient‟s other care givers to provide an extra layer of support.   
Soyannwo (2004) stresses further that palliative care services in Nigeria are undeveloped. 
There is continuing resistance to some palliative care concepts including opiate use, the 
multidisciplinary team approach to the management of medical problems and the inclusion of 
patient and family as the unit of care.   Salako (2009) reports that palliative care services face 
some challenges in Nigeria, which include: lack of awareness, lack of knowledge and skills set 
relative to palliative care.  The effective palliative care service require more than prescriptions 
and ingestion of drugs. A synergy of healthcare professionals working cohesively to ensure the 
physical, social, psychological and spiritual wellbeing of the patient is paramount. 
Palliative care requires a multidisciplinary approach to be effective (Blanch, 2002; 
Holloway, 2003). With different integrated factors which can impact on the psychological and 
social support, as well as family integration which need to be incorporated in order to achieve  
effective palliative care services of the terminally ill. Psychological supports are the different 
behavioural features that are carried out to assist and reduce the distress and agony faced by 
those with terminal illness. Social support, on the other hand, is an interpersonal process that is 
context specific and involves exchange of information and perception that the terminally ill is 
cared for and adequately reassured. The family integrated component to terminal patient care 
allows the patient not be treated as an individual with problems and symptoms, but also as a 
family member whose reactions interlock with the support system (Tanchel, 2003). The family 
of the terminally ill patient is at the centre of the unit of care and their support and education are 
vital because losses suffered by the patient will be experienced in parallel by the family. 
Therefore, it is important to give family members opportunities to talk as individuals as well as 
in groups regarding the palliative care services provided to their loved ones (Davies & Steele, 
1995).  
Previous researches have looked at the role of palliative care in the era of anti retroviral 
therapy and vice versa with emphasis on equitable distribution of drugs, its accessibility and 
affordability. This is only limited to those with HIV/AIDS receiving palliative care and not other 
terminal illnesses (Oyebola, 2007). Secondly gender issues in palliative care was also reviewed 
3 
 
 
with particular emphasis on the plight of women with terminal illness, cultural and community 
expectation of the roles women play were highlighted and also that most women underplay their 
symptoms and so do not receive adequate support in order not to disrupt the family (Akeredolu, 
2008). Besides, most of these previous studies on palliative care had concentrated efforts on the 
clinical components of palliative care in Nigerian hospitals, covering such areas as symptom 
control in palliative care (Soyannwo & Kuye, 2007), palliative care in the 21st century; a tale of 
four African nation (Onyeka, 2013), palliative care experience in breast and cervical cancer 
patients in Ibadan (Elumelu, Adenipekun, Soyannwo & Boadu, 2013), and ethical issues in 
palliative care (Ogundiran, 2007) .  Observably, none of these past studies had bothered to focus 
on the totality of the predisposing factors of palliative care which indicates the combination of 
psycho-social supports and family integration as determinants of effective palliative care of 
terminally il; hence the need for this study.  
1.2 Statement of the problem 
Mankind has always been frightened and in awe of death, even though it is an irreversible 
end of life everyone would go through. The terminally ill experiences a lot of pain and anxiety 
which can lead to suffering and threat to quality of life which refers to an individual‟s total well-
being and includes all emotionally, social and physical aspects of an individual‟s life.  One major 
hindrance in rendering palliative care in the Nigerian environment is the taboo of speaking of an 
impending death. There seems to be a culture of “death denial” among patients, their relatives 
and health care professionals. Where death is accepted, African prefers natural prolongation of 
the dying process and want to be at home so that they can make their peace, say farewell, and 
give final instructions to immediate relatives. As a result of this, many terminally ill keep away 
from medical treatment for fear of hospitalisation. There is also a form of professional or cultural 
taboo against open communication about death among physicians. Health care professionals, in 
many cases, censor the information given to patients in an attempt to protect and prolong the 
news about the „inevitable‟. Patients with terminal illness are not given the full picture about 
their diagnosis and prognosis. 
 Illnesses remain the major cause of mortality among the human population and it 
increases enormously in the developing countries. An individual faced with terminal illness is 
generally unhappy and withdrawn, his psychological well-being is traumatised and this 
negatively affects his self-esteem, he feels bad with himself due to inability to perform the roles 
expected of him. The total being is affected, ability to cope with the basic challenges of life 
4 
 
 
become traumatised and sees himself at the mercy of other people. Self-efficacy, however, is an 
individual‟s ability to be at adequate level of performance that can influence events positively. 
The terminally ill is not capable of functioning at this optimal level which can be quite 
depressing. 
On few occasions, when patients are educated about their illness and the possible 
outcomes, some patients have rejected and rebuked the idea. The very nature of the work entails 
ambivalence and uncertainty, with the result of the intervention less immediate and often 
intangible. The patient, therefore, is cared for not only as an individual but also as a family 
member whose reaction interlocks within the support system. This, therefore, raises the salient 
question: Is palliative treatment necessary when it cannot cure the terminal illness? Considering 
the cause-effectiveness, is it worth providing palliative care knowing (fully) that death is the end 
result of terminal illness? Ethically, it is the client‟s right to have peaceful death, of what 
importance is psychosocial support and family integration in providing palliative care? It is on 
this basis that this study investigated the extent to which psychosocial supports and family 
integration contribute to the palliative care of terminally-ill patients at University College 
Hospital, Ibadan.  
Hence, the study is epitomised on this central issue that: Will the incorporation of the 
independent variables of diversional support, counselling services, spirituality, rehabilitative 
supports, financial assistance and life style modification help in improving the palliative care of 
the terminally ill?  
1.3 Objectives of the Study 
The objectives of the study were to: 
1) determine the perception of health workers,  patients and family care givers on the 
effectiveness of palliative care services; 
2) determine the extent to which psychosocial support and family integration affect to 
palliative care of terminally ill patients in UCH; 
3) examine the relationship between the components of psychological support (diversional 
support, emotionally support, behavioural support and counselling services) and 
palliative care of the terminally-ill patients; 
4) examine the extent to which social supports (spirituality, rehabilitative services and 
regular visitation) relate to palliative care of the  terminally-ill; 
5 
 
 
5) assess the relationship between the components of family integration (financial 
assistance, physical care, life style modification) and palliative care of the  patients. 
 
1.4      Research questions 
1. What is the perception of health workers, terminally ill patients and family care 
givers on palliative care of the terminally ill patients? 
2. To what extent does psychosocial support and family integration improve palliative 
care services of the terminally ill patients in UCH? 
 
1.5 Research hypotheses 
Ho1: There is no significant relationship between the components of diversional support, 
counselling services and palliative care of terminally-ill patients in UCH. 
Ho2: There is no significant relationship between the components of social support and 
palliative care of the terminally-ill patients. 
Ho3: There is no significant relationship between the components of family integration and 
palliative care of the terminally-ill patients. 
 
1.6 Significance of the study 
For individuals and health care authorities, this study would provide the opportunity to 
create awareness about health and illness, including the inevitability of death. The inclusion of 
death and dying education in the educational curriculum would be highly beneficial. 
 Palliative care improves the quality of life of the terminally ill and also provides 
opportunity for the patient to benefit from holistic care. So, the study would add value to adult 
educational research and the society at large in the area of gerontology as the underlying 
psychosocial support that surrounds palliative care would be brought to the forefront in order to 
forge a better strategy for the care of those with terminal or life threatening disease condition. 
 Policy and intervention programme recommended from the study, If adopted, can serve 
to sensitise stakeholders in palliative care including government, relevant local and international 
agencies and non-governmental organization. This would address the need for improvement in 
palliative care practice and subsidise the management of terminally ill in tertiary hospitals, to 
encourage wider patronage of those with life limiting illnesses. 
 
6 
 
 
1.7 Scope of the study 
This study focused on the extent to which psychosocial supports and family integration 
determined effective palliative care of terminally-ill patients in University College Hospital, 
Ibadan. This study was delimited to patients with cancer, complicating heart diseases, end stage 
kidney disorder, HIV/AIDS and neurological problems in radiotherapy ward and clinic, 
neuroscience wards, medical wards and children‟s ward. This is because children, also have 
terminal illnesses and require palliative care too. Diagnosis period is within four weeks of 
presentation.  The terminally-ill patients were drawn from different wards within the University 
College Hospital which were; Radiotherapy Ward and Clinic, South West Four, East One, West 
West One, East Two, South East Two, West West Two, West Three, Surgical Outpatients and 
Medical Outpatients. The clinics and centres are utilised by those that are not on admission but 
come on outpatient basis for treatment.  
The choice of UCH for the study was occasioned by its position as a tertiary health 
institution with different areas of specialty. The radiotherapy ward and clinic attend to patients 
with malignant diseases. The palliative care of this group of patients is complimented by the 
Centre for Palliative Care Nigeria (CPCN) which is the first palliative care centre situated in 
Nigeria. Patients do visit the centre at regular intervals from their respective homes for 
psychosocial and spiritual wellbeing. 
 
1.8 Operational Definition of Terms 
 Counselling Services: This is the professional advice given to the patients with Terminal 
illness and their family caregivers.  
 Diversional Support: The support encompasses all forms of activities that can shift the 
attention of the patients from their distress of diagnosis to other therapies that would relieve 
their discomfort.  
 Family integration: It is the involvement and participation of the patient‟s family in his or 
her care, which includes financial assistance, physical care, life style  modification and role 
reallocation.  
 Holistic Care: This refers to the total care that is given as a result of coming together of all 
health workers, spiritualists and family caregivers in the interest of the terminally-ill patient.  
 Palliative Care: An approach that improves the quality of life of patients and their families 
facing the problems associated with life threatening illness.  
7 
 
 
 Palliative Care Services: This refers to the specialized care offered by the health care team 
which includes relief of pain, prevention of suffering spiritual care and improved quality of 
life. 
 Psychological support: This refers to all the activities given to the terminally-ill aimed at 
reducing the patients‟ distress. It includes diversional support, emotional support and 
counselling support. 
 Quality of life: Is the terminally ill patient‟s ability to live a fulfilled life during illness. It 
involves all activities that would help the person‟s physical health, psychological wellbeing, 
adequate level of independence and meaningful life.  
 Social support: The sum total of all the assistance from significant others that help an 
individual faced with terminal illness to make him/her function maximally and be part of a 
supportive social network. Such components include companionship, rehabilitative support, 
spirituality and regular visitations. 
 Spiritual Wellbeing: This deals with all the religious aspects of the patients‟ aimed at 
raising their hope and increase their faith in the trying period of illness.  
 Patients: These are sick people that have been diagnosed to have terminal conditions after 
confirmatory investigations have been done. 
8 
 
 
 
CHAPTER TWO 
LITERATURE REVIEW AND THEORETICAL FRAMEWORK 
This chapter presents a detailed review of relevant literature pertaining to the study. It was 
discussed under the following subheadings: 
 Palliative care: conceptualisation and issues 
 Psychological support and palliative care 
 Diversional support and palliative care 
 Social support and palliative care 
 Spirituality and palliative care 
 Rehabilitative support and palliative care  
 Family integration in Palliative care 
 Financial assistance and palliative care 
 Physical care and palliative care 
 Centre For palliative care Nigeria 
 Empirical studies 
 Theoretical framework of the study 
 Appraisal of literature 
 Hypotheses 
 
2.1 Palliative care: conceptualisation and issues 
Palliative care (from Latin „palliare‟ to cloak) is a specialized area of healthcare that 
focuses on relieving and preventing the suffering of patients. Unlike hospice care, palliative 
medicine is appropriate for patients in all disease stages, including those undergoing treatment 
for curable illnesses and those living with chronic diseases, as well as patients who are nearing 
the end of life (Morgan, 2000). Palliative medicine utilizes a multidisciplinary approach to 
patient care relying on input from physicians, pharmacists, nurses, chaplains, social workers, 
psychologists, and other allied health professionals in formulating a plan of care to relieve 
suffering in all areas of a patient's life. This multidisciplinary approach allows the palliative care 
team to address physical, emotional, spiritual, and social concerns that arise with advanced 
illness (Regnard & Kindlen, 2001). 
9 
 
 
Medications and treatments are said to have a palliative effect if they 
relieve symptoms without having a curative effect on the underlying disease or cause. This can 
include treating nausea related to chemotherapy or something as simple as morphine to treat a 
broken leg or aching related to an influenza (flu) infection (Clark, 2000). Although the concept 
of palliative care is not new, most physicians have traditionally concentrated on trying to cure 
patients. Treatments for the alleviation of symptoms were viewed as hazardous and seen as 
inviting addiction and other unwanted side effects (Seymour, Clark & Winslow, 2004). The 
focus on a patient's quality of life has increased greatly during the past twenty years. In the 
United States today, 55% of hospitals with more than 100 beds offer a palliative-care program 
(Joanne, 2004). A relatively recent development is the concept of a dedicated health care team 
that is entirely geared towards palliative treatment: a palliative-care team. Palliative care is 
provided by a team of doctors, nurses, and other specialists who work together with a patient's 
other doctors to provide an extra layer of support. It is appropriate at any age and at any stage in 
a serious illness and can be provided along with curative treatment (Hill, 2007). Non-hospice 
palliative care is appropriate for anyone with a serious, complex illness, whether they are 
expected to recover fully, to live with chronic illness for an extended time, or to experience 
disease progression. In contrast, hospice care is also palliative, the term „hospice‟ applies to care 
given to patients with a prognosis of six months or less to live (Jeffrey, 2003). 
WHO (2002) defined palliative care as an approach that improves the quality of life of 
patients facing the problems associated with life threatening illnesses and their families through 
prevention and relief of suffering by early identification, and relief of pain and other problems be 
it physical, psychological or spiritual. However, the goal of palliative care is to promote the 
quality of life across the illness trajectory through the relief of suffering, including care of the 
dying and bereavement follow-up, Coyle (2002:579) reported the exact words of a palliative care 
patient: 
 
My life‟s work is done, but I am not able to die. How can the day 
to day time I have left be given a sense of meaning?” The hardest 
thing is living without a goal a new way of being-just being that 
is the hardest thing: I know that I‟m going to die at some point, 
but I don‟t want it to be a painful and undignified death. This is 
the most important time in my life and yet I  feel disconnected 
from it  Its  hard to talk to my family about how I feel-they don‟t 
understand. 
 
10 
 
 
As reflected by the words of the patient quoted, illness both affects and is affected by all 
aspects of the individual‟s being, Kearney (2000) opined that the potential for healing in the face 
of progressive disease is a potential rooted in the special relationship between the healer and the 
sufferer. The genuine warm and compassionate relationship of a palliative care or hospice care 
provider, with his or her patient is frequently a healing relationship. The health care team gives 
attention to the physical, psychological, social, spiritual and existential aspects of the patient and 
family i.e whole person care (holistic) Morrow (2004) described palliative care as a combination 
of state of the art clinical competence with fidelity to the patient, the ability to listen and to 
remain present in the face of much suffering and distress and communication at a deeply 
personal level with the patient and family.  Palliative care involves having a genuine interest in 
the person as an individual and the ability to convey hope even in the face of death. In the view 
of Coyle (2002), specialised education and training as well as mentoring by seasoned palliative 
care team is recognised as a needed foundation for palliative care and hospice care, without such 
training, health carers inevitably find themselves in situations where they are unable to provide 
necessary symptom control and amelioration of suffering for those living with advanced 
progressive disease and those near death. 
 There is a particular thought that sometimes run through the minds of health care givers 
which is their inability to adequately care for the terminally-ill due to ignorance, this experience 
is as true today as it was several decades earlier, it is rather impossible for any health care giver 
to practise what they do not know, and it‟s usually traumatic if this thought haunts somebody 
after the ill person has died. However, when under the care of a skilled palliative care personnel, 
patients and their families struggling to live in the face of progressive, symptomatic and 
debilitating disease can be well cared for and supported through this process, and find meaning 
and peace even in the face of death. This is the essence of skilled palliative care giver-to 
facilitate the “caring” process through a combination of science, presence, openness, 
compassion, mindful attention to detail and team work (Brazil, Howell & Bedard, 2005) 
 In the view of Kuhl (2002), even with the knowledge and art to control the majority of 
symptoms that occur during the last months, weeks, and days of life,  there is much to learn 
about how to alleviate the psychological and spiritual distress that come with life threatening 
illness, listening to the experts, the patients and their families will help obtain the necessary 
knowledge. Kathleen (1998) commented that advances in health care have changed the trajectory 
of dying, improved nutrition and sanitation, preventive medicine, wide spread vaccination use, 
11 
 
 
advancement in appropriate antibiotics and an emphasis on early detection and treatment of 
disease have resulted in fewer deaths in infancy and childhood, and fewer deaths from acute 
illness. Majority of deaths occur after a long progressive debilitating illness like cancer, heart 
disease, kidney disease, lung disease and acquired immunodeficiency syndrome (AIDS). 
Palliative care needs of children have long been ignored, and in response to this, it has now been 
expanded by building on the long tradition of hospice care and models of excellent care within 
the hospice. Palliative care for children represents a special albeit closely related field to adult 
palliative care. Palliative care for children is defined as the active, total care of the child‟s body, 
mind and spirit and also giving support to the family. it begins when illness is diagnosed and 
continues regardless of whether or not a child receives treatment directed at the disease, (WHO 
1998). Effective palliative care for children also requires a broad multidisciplinary approach that 
includes the family and makes use of available community resources that can be successfully 
implemented even if resources are limited, It can be provided in tertiary care facilities, 
community health centres and even in the children‟s home. 
 Morrow (2011) explained that palliative care is a specialised form of care that aims to 
enhance the quality of life of patients and their families who are faced with serious debilitating 
illness, it focuses on increasing comfort through prevention and treatment of distressing 
symptoms, it also focuses on clear communication, advance planning and coordination of care. 
She further stressed that palliative care encompasses the whole self, caring for the physical, 
emotional and spiritual needs of patients and their families, the goal is to prevent and relieve 
these symptoms, thus improving his/her quality of life. Traditional palliative care can be offered 
anytime in the course of an illness, but ideally should begin at the time of diagnosis. 
 Morrow (2011) went on to say that it is a common practice to have different doctors 
treating separate conditions like endocrinologist treating diabetes by managing blood sugar, the 
cardiologists managing heart disease, nephrologists managing kidney disease. A palliative care 
physician often acts as the conductor orchestrating the care between several specialist to produce 
care that is in perfect harmony. Palliative care is carried out by a team of professionals who are 
committed to working together to provide the patient and her family a comprehensive care, the 
team includes palliative care physicians, specialist or general practitioners, nurses, social 
workers, carers, physical occupational speech therapists and spiritualists. The team offers support 
to patients and their loved ones, helps them navigate through the health care process and assist in 
making health care choices that are right for them. At present, finding palliative care in an 
12 
 
 
outpatient setting proves challenging but that is changing, as more hospice are springing up in 
developing countries like centre for palliative care (CPCN) in University College Hospital, 
Ibadan, Nigeria. Someone with any life limiting illness can benefit from palliative care. It was 
formerly believed that palliative care is only for cancer patients, but it cares for people with 
different kinds of illness that are life limiting and chronic infections like HIV, heart problems, 
kidney diseases and neurological disorders (Soyanwo, 2004). 
To Dombrowski (2007), palliative care is a new term to many, when it comes to 
achieving the best quality of life for persons with advanced illness. Palliative care is an approach 
to health care that focuses on the relief of suffering end of life, seek relief from pain, a sense of 
control, to relieve family burdens and to strengthen relationships with loved ones, palliative care 
involves the persons with advanced illness. their family members, in addition to the physician, a 
nurse, a chaplain, a pharmacist, a social worker, and other appropriate disciplines in group 
meetings.  
The goal is to involve the family in discussions regarding the patient‟s desires; this may 
include life prolonging therapy or comfort measures that include hospice care. Due to the fact 
that most individuals are uncomfortable with a discussion on end of life measures, many seek 
life-prolonging therapy and then pass away when all options have been exhausted. There is little 
consideration given to other options like palliative care; this is partly because palliative care is a 
relatively new concept and also because the families and the person with advanced illness do not 
want to be seen as giving up. It is, therefore, important to note that a discussion with family 
members is an obvious decision. Open communication, thus, allows families to become more 
informed about options for persons with advanced illness. Family members and individuals were 
thereby encouraged to take advantage of this important educational benefit in order to make the 
best decision for themselves or a family member in need of help. An obvious complicating factor 
is that individuals and families hesitate to discuss end of life care because they usually don‟t 
know what to say or how to discuss the subject (Tanchel, 2003. 
 However, palliative care personnel at hospitals serve as intermediaries by introducing 
information regarding palliative care and the process to family members, usually, just having 
someone to talk to who has been through the experience is helpful. Many family members are 
often relieved to have the support of professionals who can guide them to make the best 
decisions. Palliative care is truly a process that can support individuals and families through the 
uncharted water of end of life care and decisions.  Palliative care models include home-based 
13 
 
 
care for those who prefer to be managed at home, anchors specially trained palliative care 
professionals, maximized coverage and sustainability within modest resources.  Hospice is 
another model of palliative care which can be made up of hospital based unit or suitable 
accommodation for chronically ill, who would require specialised care and good quality of 
remaining life (Emilia, 1998; Blanch, 2002). 
The palliative care and family centre care provided through hospice programme was 
essential but the rationing of hospice programme (based on progression) and the requirement of 
denying life prolonging therapies were barriers that deprived many individuals of the benefit of 
such care. The palliative care model evolved from the traditional hospice perspective to address 
quality of life concerns for those patients living for prolonged periods with a progressive 
debilitating disease. It recognized that such factors required skilled and compassionate palliative 
care interventions, regardless of prognosis, life prolonging therapy or closeness to death (Ashby, 
Kissane & Beadle, 1996). Palliative care began in the hospice movement and is now widely used 
outside of traditional hospice care. Hospices were originally places of rest for travellers in the 4th 
century (Cooke, 1995).  In the 19th century a religious order established hospices for the dying 
in Ireland and London (Cooke, 1999). The modern hospice which is a relatively recent concept 
that originated and gained  momentum in the United Kingdom after the founding of St. 
Christopher's Hospice in 1967 was founded by Dame Cicely Saunders, widely regarded as the 
founder of the modern hospice movement (Cruciatti & Mont, 1995). African hospices provide 
supportive interventions to their staff, who are exposed to large-scale loss of patients in the 
HIV/AIDS epidemic (Grahamstown, 2002). The hospice programme at Selian Hospital in 
Arusha, Tanzania, was begun without resources beyond existing hospital staff and facilities 
(Hartwig, 2001).  In Uganda, Little Hospice Hoima was initiated as a demonstration project of an 
affordable service at the village level, and Mobile Hospice, Mbarara, offers mobile-home 
palliative support through roadside clinics (Hospice Africa Uganda, 2003). 
From 2005 to date, 23-27 million cases were recorded in sub-Saharan Africa leading to 
2.5 million deaths (UNDP, 2010), thus, representing a huge loss which impacts significantly on 
health systems, social and family structures.  In Nigeria, records from the University College 
Hospital revealed that every year, about 3000 patients attend radiotherapy clinic (Medical 
Records, 2012)  and the statistics has increased by about 25percent  within the past five years; 
out of  190,000 people identified as new cases of tuberculosis in 2011, mortality record was 
14 
 
 
about 27,000 and 83percent of the diagnosed cases tested positive to HIV/AIDS, hence the need 
for effective palliative care cannot be over emphasised. 
 Looking at the relationship between hospice and palliative care, hospice can best be 
described as a programme through which palliative care is intensified as an individual moves 
closer to death. Patients and families living with chronic debilitating and progressive disease 
receive palliative care throughout the course of illness and its treatment. As they come closer to 
death, they are able to transition without added distress into hospice programme of care. 
 In  recognition of the changing trajectory of dying, World Health Organization (WHO 
2008) modified its definition of palliative care as an approach to care which improves quality of 
life of patients and their families facing life threatening illness, through the prevention, 
assessment and treatment of pain and other physical, psychological and spiritual problems 
(Morrow, 2011). The new WHO definition broadens the scope of palliative care beyond end-of-
life care and suggests that such an approach can be integrated with life prolonging therapy and 
should be enhanced as death draws near. The focus of all these efforts is to change the standard 
practice of palliative care in which there is a distinct separation between diagnosis, treatment and 
end of life care to a vision of the future in which there is an appropriate palliative care, for 
example, at the time of cancer diagnosis and initiation of treatment, the patient would also have 
access to psychological counselling nutritional services, pain management fatigue management 
and cancer rehabilitation. According to Cassell (2000), labelling a patient as dying has 
implication at both individual and social levels. The patient and his/her care may become 
disengaged, which undermines the potential for growth. The nature of palliative care and the 
approach of its interdisciplinary team are dependent on the needs of the patients and the 
resources available. The interdisciplinary team serves as one common denominator. There is 
flexibility regarding the location of care. It could be in the patient‟s home, clinic and hospice.  
The term quality of life is used to evaluate the general well-being  of individuals and 
societies; it is used in a wide range of contexts, including fields of international development 
healthcare and politics. Quality of life should not be confused with the concept of standard of 
living, which is based primarily on income (Gregory, Derek, Johnston & Geraldine, 2009). 
Within the field of healthcare, quality of life is often regarded in terms of how it is negatively 
affected, on an individual level, a debilitating weakness that is not life threatening, life 
threatening illness that is not terminal (Layard, Richard, 2006; Kahnman & Deaton, 2010). The 
phrase quality of life means different things to different people, to the health care professional, it 
15 
 
 
may mean relieving of suffering; for the relative of the terminally ill, it may mean changing 
relationships and dynamics within the family, and for the patient, it may be a threat to their . 
These different views are predicated upon by their individuality and autonomy (Cella, 1992). 
 There are two components in quality of life which are subjectivity and 
multidimensionality (Cella, 1992). Subjectivity means that the quality of life can only be 
determined by the individuals themselves, where the individual is not able to do so, then there 
must be a good working knowledge of the individual which takes account of all available wishes 
of that particular individual. It should, however, be borne in mind that the individual‟s 
perspective should be the overall goal of the care package focusing on the whole person.  
multidimensionality aspect of quality of life,  entails the physical, functional, emotional and 
social well-being  of the person. Quality of life measures the difference between the person‟s 
hopes and expectations against their present position with respect to current experiences 
(Calman, 1984). He explained further that quality of life is not only about the individual, but the 
caregiver as well. Caring for an individual may place a heavy responsibility on the shoulders of 
the carer, thus possibly maintaining the quality of life of one individual at the expense of another. 
The commonly identified components of quality of life according to Calman (1984) and Frank 
(2001), includes physical component which entails pain control and symptom management, 
functional ability that deals with activities of daily living; activity, tolerance, family support  
emotional stability and spirituality, which means different things to different people. Satisfaction 
of treatment interventions are necessary and should be what the individual wants, future plans, 
hopes and wishes, cultural beliefs, perception of body image, sexuality and financial concerns. 
 Quality of life may be assessed using a variety of measurement tools. The medical quality 
of life tools tend to measure the presence or absence of symptoms and side effects from 
treatment. Disease specific tools usually measure physical, psychological and social dimensions 
of a person‟s quality of life (Herth, 1990). Whilst this is very important, it should not be assumed 
that the absence of an unpleasant symptom will mean that the person will perceive their quality 
of life as being good. All the above mentioned components would vary from person to person as 
well as fluctuate in respect of the varying magnitude of illness in the different individuals 
(Scottish Executive, 2001). Since palliative care is an approach that improves the quality of life 
of patients and their families facing problems associated with life threatening illness, using a 
holistic approach is a golden approach of care (Fagbenle, 2007). The palliative care team should 
be well informed of the appropriate approach. While dealing with this, they should show an 
16 
 
 
optimistic approach of care and understand that palliative care is a right of every child and adult 
with a life limiting disease (Fagbenle, 2007). To enhance quality of life, an attitude of 
partnership between the caring team, the patient and family should be developed i.e politeness, 
honesty, active listening, explanations, agreeing on priorities and goals, discussion of treatment 
options and autonomy of the patient. In ensuring quality of life, patient should be pain free at rest 
and at night. Other symptoms should be controlled as much as possible. 
 When curative treatment is no longer working for some patients, continued attempts at 
curative treatment could be harmful, or may provide another few weeks or months of life (though 
patient may be very ill to enjoy that lease of life) and hope for full recovery gone, the hope for 
quality of life prevails if the ill person is receiving palliation in hospice or at home with loved 
ones as well as hope for a dignified pain free death (Quality of Life, 2004).       
 When patients are given the devastating news that they have a terminal illness, the 
question that comes to mind is whether they would suffer, and this often becomes the elephant in 
the room. The patient may not want  to ask question because of their fear that no one will be able 
to answer “No” with any level of assurance. Unfortunately, this may be true – not because of a 
lack of care, but because so little is known about the age-old human experience, to prevent and 
relieve suffering, which are important goals in health care (Cassel, 1998; Wright, 2005). Without 
precision and comprehensiveness, accurately measuring suffering, identifying the most important 
correlates of suffering, predicting who is at the highest risk of experiencing it, and testing 
interventions to relieve it, will continue to elude us. Cassel (1998) suggests that these problems 
can be tied to the reductive methods of gaps. There are some common themes among these 
definitions. Most often listed are feelings of isolation, presence of unrelieved symptoms and 
inability to completely capture the experience in everyday language. 
 In the submission of Barnes, and Nortender (2000), findings from several small studies of 
terminally ill patients have demonstrated that the prevalence and severity of suffering tend to be 
high and  as noted by Kupelomaki (1998), physical symptoms are often present, but what is so 
daunting about suffering is that some patients with unrelieved severe physical symptoms report 
minimal to no suffering, whereas those experiencing minimal physical symptoms may report a 
great  deal of suffering Wright (2005) attributes this to what goes on in everyday clinical care 
which she labels “medical narrative” in which patients and their families are encouraged to tell 
only their medical story, which is very circumscribed, and includes the usual pieces of 
information, medications dosage, past tests and current complaints. What is not always captured 
17 
 
 
is the „illness narrative in which patients and families tell their stories of suffering and the effects 
of suffering on themselves, their relationships and ultimately, their world. Without this 
information, there is little understanding of the source and meaning of the patients suffering. 
 Reviewing the various ways in which suffering has been characterised in palliative care, 
Chapman and Garvin (1993) noted three features common to most descriptions. Suffering 
generally occurs in the context of a perceived threat to the integrity of the self, it is by definition 
an inherently unpleasant emotional experience, and it represents an enduring psychological state 
rather than helplessness in the face of threat. In addition to defining suffering, this description 
provides an understanding of how factors other than physical symptoms can contribute to 
suffering. Psychological symptoms (e.g depression) and existential distress (e.g concerns about 
death) also are sources of suffering since they too, can be experienced as unpleasant, can occur 
on a frequent or chronic basis and can be perceived as uncontrollable (Cassel 1992; Cherny, 
Coyle & Folye, 1998; Doyle, 2000). 
 Pain is defined as an unpleasant and emotional experience associated with actual or 
potential tissue damage (International Association for the Study of Pain, 2004). The Dorland 
medical dictionary (2002) defines pain as a sensation of discomfort, distress or agony resulting 
from stimulation of specialised nerve endings. Out of the various symptoms experienced by 
patients with terminal illness and end of life, pain is one of the commonest and most feared 
(Paice 2004). Chronic conditions or terminal diseases that cause severe pain can be difficult to 
manage both medically and psychologically. These painful diseases cause a reduced quality of 
life for the patient and family members (Halloween, 2008). Pain can interfere with a person‟s 
ability to do daily activities, and essentially enjoy their lives. Palliative care has shown progress 
in effectively dealing with these types of pain (Koerein, 2004). In the past, palliative care was 
used for symptom and pain management for the  patient; over the last few years, it has grown to 
be very helpful with the pain and symptoms management of chronic illness. The programme 
involves nurses, physicians and social workers that are all specialised within this field. These 
professionals have unique training and are fully prepared in dealing with the issue of hard to 
control pain (Doyle, 2004). 
 Palliative care has been able to improve pain management with a wide variety of ailments 
like lower back pain, rheumatic disorders, neurological disorders and terminal illness. Awareness 
continues to increase in this programme and patients, having pain difficulty, are adequately 
referred for proper management. Once the palliative care team takes over the patient, care is 
18 
 
 
promptly commenced and the team continues to update the original referring physician. This 
primary physician often finds a relief from the services of the specialised palliative care team 
who strives to make the patient more comfortable and this improves their life (Fair Filed Country 
Business Journal, 2008). 
Comprehensive assessment of pain is imperative; this must be conducted, initially, 
regularly, throughout the treatment, and during any changes in the patient‟s pain state (Torker, 
2005). Assessing patient‟s  pain is a critical part of determining the patient‟s needs. Without a 
thorough and accurate assessment, the physician and medical staff will not be able to provide the 
correct pharmacological relief for the patient. Palliative care helps patients with severe pain by 
utilising different pain medications with varying strengths to achieve a round the clock pain 
management (Paice, 2003). 
 Terminal illness by itself brings about pain to the sufferer; but contrary to general or 
common belief, pain is not an inevitable part of end of life health conditions, much suffering 
undergone by patients with terminal illness can be prevented because there are drugs to provide 
relief. The final goal is to make the patient pain free while maintaining good quality of life as 
much as possible. The drugs should provide relief for patients and, thus, allow the incurable ill to 
die with dignity (Akinkoye, 2007). The health care providers are critical members of the 
palliative care team, particularly in providing pain management. This begins with assessment and 
continues through the development of a care plan and implementation, the team also provides 
education and counselling to the patients and their families, thereby making them responsible for 
developing institutional policies and monitoring outcomes, to provide optimal pain control, all 
health care professionals, must understand the frequency of pain at the end of life, the barriers 
that prevent good pain management and the treatment used to provide relief. 
2.1.1 Barriers to pain relief:  Barriers to good pain relief are numerous and it is due to lack of 
education, misconceptions or attitudinal issues. These barriers contribute to the large number of  
patients who do not get adequate pain relief (Baker, 2000). A careful examination of these 
barriers provides the guide for changing individual practice. The barrier facing individual with 
other disorders commonly seen in palliative care are not well characterised. These groups of 
patients are more affected. Barriers in relation to health care providers have to do with fears 
related to opioids (analgesic), held by professionals resulted in under-use of these analgesic. 
Survey has revealed that the health care practitioners, including pharmacist express concerns 
about addiction, tolerance and side effects of these drugs. Despite this evidence, lack of attention 
19 
 
 
to pain and its treatment during basic education is frequently cited (Beaver, Luker & Woods 
2002). Those providing care at the end of life must evaluate their knowledge and beliefs, 
including cultural biases, and, as such, educate themselves (Zemosky, 2003). In health care 
settings, the Opioids analgesic may not be available in desired quantity; this can affect both the 
sparsely populated rural setting as well as the inner city pharmacies who may be reluctant to 
carry these medications (Akinkoye, 2003) Pain management continues to be a low priority in 
some health care settings, reimbursement for these services is poor while some settings lack 
qualified professionals that have knowledge of pain management. The cost of these drugs may 
also be an issue (i.e affordability). At the end of life, patient may need to rely on family members 
or other support person to dispense medication, Paice (2004) discovered that there is little 
concordance between the patients and family members. The interdisciplinary team in palliative 
care is essential in providing explanation of the meaning of pain, its possible barriers and good 
relief. (Clerridge & Cassey, 1998).  
2.1.2 Pain in children: The definition of pain recognises that pain is a combined sensory and 
emotional discomfort, and that a physical manifestation may not need to be present for a child to 
experience pain (Brown, 2007). Pain varies in types; it can be classified according to duration 
which may be sudden, persistent, „off‟ and „on‟, may be associated with physical manifestation. 
All these ultimately affects quality of life, social activity and personal relationship. Pain could 
also be associated with mood changes and depression (Paice, 2004). Children are unable to 
express themselves as adults would. So the palliative care provider should be able to assess them 
properly- basic tools for assessing them include facial expression, body movement and cry. 
Brown (2007) emphasised that the assessment of pain should not be generalised but rather 
individualized as no two persons can be the same and the reaction to pain differs, it should also 
be borne in mind that improper assessment and its management will have negative impact on the 
patient‟s life. 
 World Health Organization (1998) defined pain ladder as a simple effective ladder for 
escalation of analgesic drug therapy, devised for pain related to terminal illness. 
By the clock-This is to maintain freedom from pain that is every two hours, three hours, four 
hours or six hours rather than on demand. By the appropriate route- which is to give the drugs 
through the simplest, most appropriate and less painful route. By the child/patient-the dosage of 
the pain relieving drugs vary from one child to another, so also the time of administration varies, 
20 
 
 
hence the correct dose of the pain reliever is the dose that provides adequate relief of pain with 
an acceptable degree of side effects. 
 In relief of pain, the most common analgesics used in terminal illness is the opioid 
analgesics that belong to the group of narcotics. Although, there are no national prevalence, 
statistics about pain in Nigeria (Brown, 2007), many of the  patients have pain, and this 
constitutes a major health problem. Effective pain management and control is a very vital facet 
of palliative care. Poorly managed pain will lead to poor quality of palliative care provided. In 
many developing countries like Nigeria, the prevalence of pain at the time of terminal illness 
diagnosis is between fifty percent and seventy-five percent. A terminal cancer patient study in 
Kenya and UK found that African‟s main concerns was for pain control and analgesic drugs 
while for those in developed country, the major concerns was emotional pain (Harding, Powell, 
Downing & Connor, 2008). Uganda is the only third African country that made morphine 
available and affordable to its patients population (Spance, Merriman & Binagwaho, 2004). The 
several challenges facing effective pain relief is similar in other developing nations and this 
includes drugs availability, lack of referral, fears of misuse, under prescription and lack of public 
awareness. Cultural and religious beliefs may also constitute barrier (Soyanwo, 2004). Morphine 
given in increasing amount is safe for the patient‟s in pain and should be administered until the 
pain is relieved without producing an overdose as long as the side effects are tolerable. The ideal 
dose is the one that relieves the pain.  
Non-drug therapies, including cognitive behavioural techniques and physical measures 
can serve as adjunct to analgesics in palliative care setting, though this is not suggesting that 
when these therapies work, the pain is of psychological origin. Benzeni (2008) reaffirmed that 
the patients and caregivers abilities to participate must be considered when selecting any of these 
therapies. This includes their fatigue level, interest, cognitive and other factors. Cognitive 
behavioural therapies include strategies to improve coping and relaxation. Other aspects of non-
pharmacologic measure include education, exercise, coaching, coping music, etc. These have 
been found to effectively relieve pain-related terminal illness. Cantor (2003) reported suffering 
from terminal disease. Rhconer (2001), on the other hand, submitted that physical measures like 
heat and cold massage with cognitive behavioural strategies such as distraction and relaxation 
were useful remedies  in reducing pain among those with terminal illness (though positive 
response depends on the severity and clinical status of the patient). 
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Communication is sharing of ideas or information in order to come to a common 
understanding. It is a process by which people exchange information or express their thoughts, 
feelings and attitudes. It is a two way process that involves the transmitting and receiving of 
messages (Buckman, Baile & Korsch, 1998). It is also the process by which information, 
meanings and feelings are shared by persons through the exchange of verbal and non-verbal 
messages (Brooks & Hearth, 1985). For communication to be effective, information should be 
understood by both the sender and receiver, it can either be verbal or non-verbal, in palliative 
care practice, improved communication enhances the patient‟s psychosocial adjustment, 
decision-making, adherence to treatment, satisfaction with care improved patient understanding 
and trust. For the palliative care giver, good training in effective communication would improve 
clinical skills, reduce the high level of stress reported by professionals, reduce burn out, litigation 
and improve satisfaction. 
 Communication is an essential element in all areas of life and is more important while 
dealing with sick people. There is a great need for effective communication while caring from 
the terminally-ill patient, the family members and caregivers. Good communication in terminal 
care is believed to enhance the quality of remaining life of a terminally-ill patient and his/her 
family (Ajayi, 2007). The work of palliative care is based on a relationship with patients, their 
families, professional team and others. Poor communication on the other hand, makes life 
difficult for a patient and his family/caregivers. It creates a sense of rejection, confusion, 
misunderstanding and despair. 
 There is quite a number of published literatures on the emotional and psychosocial needs 
of the dying patient, and the importance of communication as a major component of the 
palliative care delivery (Doyle & Hanks, 1988; Kaplan, Greenfield & Ware, 2001). On the other 
hand, there is less literature on practical assistance for the palliative care practitioner in 
improving his or her communication skills (Maguire, 1985). It is evident that in our society, any 
conversation about death and dying is awkward and different. More so, between the health 
practitioner and the patient, this is a social problem which originates from the way society view 
death. Therefore, improving the communication techniques among the palliative care team 
would make it easier to overcome obstacles emanating from defective communication (Garg & 
Beckman, 1988). 
  For effective communication, privacy should be ensured, the environment should be free 
from all obstacles, communication should be in a relaxed environment, preferably in sitting 
22 
 
 
position. If the patient is comfortable lying in bed, he/she should be allowed to do so; 
radio/television can be turned off with the patient‟s permission to avoid distractions. 
2.1.3 Body language: Try to look relaxed and unhurried (even if one is feeling the opposite), 
let shoulders relax, feet flat on the floor neutral position adopted and neutral position 
Eye contact: Maintain eye contact for most of the time the patient is talking. If the conversation 
becomes intense or emotionally charged (like crying or angry), it is helpful for the health care 
giver to look away at that point. 
2.1.4 Touching: Touch may be helpful during communication, especially if a non- threatening 
area is touched e.g hand or forearm. This makes the patient feel comfortable it is likely that 
touching is comforting during distress and should be encouraged, provided the health care 
professional is sensitive to the patient‟s reactions, if the patient is uncomfortable, the health care 
professional should stop (Older, 1984).  
Before commencing communication, the palliative care professional should introduce 
himself/herself to the patient and let him/her know his/her profession and intention. During 
dialogue, the health care provider should be attentive and show the patient he is listening and 
attentive. The listening skills and techniques include open questions (How are you? facilitating 
pausing or silence when patient speaks, nodding, smiling or telling the patient to tell me more 
about that”) clarifying and handling time and interruptions. 
2.1.5 Empathic Response: The nature of palliative care and the outcome of terminal illness 
calls for empathy in which case the palliative care givers have to be knowledgeable in handling 
this type of situation. In empathic response, the health care giver does not have to feel sad at the 
same time that the patient feels sad. This should simply be a technique of acknowledgement, 
showing the patient that you have observed the emotion he is experiencing. The objective of the 
empathic response is to demonstrate that the palliative care givers acknowledge what the patient 
is experiencing. If this is not acknowledged, it renders the rest of the interaction useless (Brooks 
& Heath, 1985). 
 The management strategy, therefore, would be for the palliative care giver to assess the 
patient expectation of his condition, treatment and outcome, it is possible to have a mismatch 
between what the patient‟s view is and the medical facts, it is more challenging if there is a 
marked discordance between the patient‟s view and reality. The response of the patient too 
should be assessed, it is important to use the knowledge of communicative skill to identify the 
23 
 
 
stage of forming an action plan which could be contemplation, implementation and 
reinforcement phases to arrive at an action plan. 
Bereavement is considered as the socially sanctioned time duration following the death of 
a significant person that allows for the expression of grief (Johnson, 1977) Society today 
continues to deny and fear the reality of death, it is suggested that death is swept under the 
carpet, so that people can distance themselves from a frightening and uncomfortable subject, but 
it remains a universal fact that 100% of all people will die (Parkes, 1997). Bereavement is not a 
new phenomenon, rituals and practices marked the change from savagery to barbarism as 
humans began to illustrate a concern for the dead (Payne 2000). Gender, age and culture can all 
have different effects on how an individual copes with grief (Jacob 1993; Penson, 2002). By 
considering these factors and developing an increased knowledge and understanding of 
bereavement, healthcare professionals can identify individuals who may be at risk of developing 
complications at an early stage. 
 Palliative care philosophy has emphasised support for the bereaved as not less important 
than its other contributions to healthcare in pain and symptom management, home care and 
family support (Parkes, 1993). Most palliative care teams allocate specific resources of 
bereavement risk assessment, early intervention, and continued monitoring of individuals 
exposed to loss of loved ones through terminal illness. Palliative Care Australia has established 
the maintenance of a bereavement service as a core component of comprehensive palliative care 
(Palliative Care Australia, 1999). In contemporary society, bereavement, most commonly, refers 
to the death of a significant person. Bereavement can be expressed in culturally various acts of 
mourning, for example; funeral ceremonies, or ritualised withdrawal from public activities. 
„Grieving‟ refers to the psychological component of bereavement, the feelings evoked by a 
significant loss, especially the suffering entailed when a loved person dies. Sigmund Freud, 
(1982) viewed grieving and mourning as the processes whereby the bereaved person adjusts to 
the reality of their loss, enabling them to disengage from the deceased and reinvest in new 
relationship (Klass, 1996). John Bowlby‟s Attachment theory (1996-80) and Parkes‟ Psycho-
Social Elaborations (1972) offer psychological models of bereavement, allowing predictions 
regarding the outcome of an individual‟s bereavement process (Parkes, 1993). 
Bowlby believed that our emotional bonds „arise out of deep seated innate mechanisms 
which have evolved in order to ensure survival‟ (Parkes, 1993). Bowlby argued that infants of 
many species have physical features and behaviours which offer care and protection from older 
24 
 
 
group members. Infants also possess a motivational “attachment system” designed by natural 
selection to regulate and maintain proximity between infants and their caregivers‟ (Fraley & 
Shaver, 1999). The theory implies a cause-effect relationships between early attachment patterns 
and later reactions to bereavement, arguing that „whether an individual exhibits a healthy or 
problematic pattern of grief following separation depends on the way his or her attachment 
system has become organized over the course of development‟ (Fraley & Shaver, 1999:740). 
While accepting Bowlby‟s theory, Parkes also emphasises the importance of the psycho-social 
transitions required after bereavement. These depend upon the role the deceased had in the life of 
the bereaved (Parkes, 1993). 
Kubler-Ross (1969) models of grief and coming to terms with death have also 
predominated. She suggests five distinct phases: denial and isolation, anger, bargaining, 
depression, and finally, acceptance (Kubler-Ross, 1969). Any person who is bereaved, facing 
their own death, or dealing with loss, should move through these phases sequentially. Potentially, 
a person could get „stuck‟ at any stage, impeding their movement to the next stage and, thus, 
obstructing „resolution‟ of their grieving process.  
 Caring for individuals and their families prior to and following the death of relatives or 
friends can be very stressful for healthcare professionals and can cause them to question their 
beliefs and attitudes. The importance of relationships and attachment in understanding how 
individuals experience bereavement was further developed by Bowlby (1980) who proposed that 
attachments are formed early in life between the child and the parents in order to feel safe and 
secure, and to survive. However, if this attachment is threatened, it can lead to intense anxiety, 
despair and emotional detachment e.g. children who had lost something special might cry, shout 
and have tantrums so that it is brought back. Bowlby claimed that in adult life the same 
mechanism are used to attempt to bring back their loss (Payne, Horn & Relf, 2000). His four-
phase model of grief includes: shock and numbness, yearning and searching, disorganization, 
despair and reorganization. Bowlby firmly believed that if the phases of grief were worked 
through, the risk of complicated grief would be lessened for each individual, as safety and 
security was reintroduced into their lives (Payne, 2000; Evans, 1994). 
 Practical advice is commonly sought by family and friends, but also by staff who have 
supported patients through stages of discomfort, fear and regret. There are no quick and easy 
answer, no recipes for every situation of loss and grief. Nevertheless, many useful texts are 
available, Worden (1991) and recent reviews by Parkes (1998) and Sheldon (1998) are succinct 
25 
 
 
and helpful. Worden (1991) suggests that a bereaved person needs to accomplish four basic 
tasks: accept the reality of the loss, experience the pain of grief, adjust to an environment from 
which the deceased is missing; and reinvest energy in other possibilities. One of the most 
effective ways of managing a bereaved person is to offer a safe and caring setting in which to 
express grief, facilitated by someone who is not too close to the bereaved or the deceased person, 
and so not seen as required to share the burden personally (Worden 1999). Such a setting is 
provided by a bereavement group, whose members have all experienced loss and who meet with 
a trained facilitator to share their experiences and feelings. Members of the group find support in 
these encounters through mutual understanding (Mckissock, 1994). Maintaining contact with the 
bereaved person is also important, whether it be in the form of a friendly telephone call from a 
volunteer or more skilled counsel from a social worker or trained bereavement worker. Parkes 
(1980). Regular anniversary remembrances (such as a card or phone call) from the team are 
considered helpful by many, gently breaking in on the difficulty or loneliness. The opportunity to 
attend memorial service, some months after the death has occurred, offers a focus to the hope for 
healing process. 
 It is important to recognise that, along with the sadness, anger, bewilderment and anxiety 
that can accompany loss, natural healing processes are often also at work to facilitate adjustment 
and adaptation. Separation from people and environments that are important to an individual, 
occurs repeatedly throughout life. The ensuing sequence of events often entails disbelief or 
denial, followed by intense physical reactions of weeping and yearning. This may be succeeded 
by a time of extreme loneliness and disturbed thought, with repeated replaying of the sad events. 
Only after a longer period will a sense of reintegration and readjustment allow the bereaved 
person to take up life again with confidence. But there is no set or certain sequence to follow, 
and emotions may fluctuate wildly, while sometimes flaring up with an intensity of emotional 
pain may elongate the initially promised adjustment period. (Parkes, 1980) 
 The grieving process may be complicated for certain vulnerable individuals or for any 
person faced with especially stressful circumstances of loss. People who have suffered earlier 
separation or losses for which adjustment proved difficult, people with existing psychiatric 
disorders, or people coping with family dysfunction or uncertainty in their close relationships 
will often experience greater difficulty. The loss of close relatives or friends (e.g, a spouse or 
one‟s own child), a sudden traumatic death of suicide, death by murder or from a disease is 
difficult to talk about (eg, AIDS) can also complicate grieving (Walshe, 1997; Raphael, 1999). 
26 
 
 
These situations may increase the risk of intense and prolonged mourning, depressive or anxiety 
disorder and poor physical health. Skilled assistance is often needed to help people in these 
situations progress beyond their grief. 
 Major cultural factors also influence how grief is expressed and managed. People from 
some culture express their grief loudly and publicly, while others become silent and withdraw. It 
is important to respect “cultural safety” and meet with families and individuals on their own 
cultural terms. (Prior 1999). Particular importance is attached also to grief affecting adolescents 
and children, which requires a sensitive recognition of their special needs (Henshelwood, 1997; 
Stokes, 1999). Many palliative care workers who are experienced in bereavement care are 
concerned at the lack of bereavement support available in major healthcare institutions such as 
teaching hospitals. In such environments, sudden death, traumatic death and death in unfamiliar 
and isolated circumstances creates, more likely, the risk of complicated grief for those left 
behind. This deficiency is being particularly addressed in palliative care (Williams, 2000). 
Grieving is a normal response to loss, and not everyone needs expert intervention to help 
manage grief. Assessment by palliative care services can help determine who needs assistance 
and recommend appropriate responses. If considered appropriate, intervention should begin at 
the time of referral and continue through terminal care into the time after death. That means a 
focused and structured program within the day-to-day work of the palliative care team, calling 
for resources that have not always been easy to access or maintain. (Aranda, 2000). Grief is an 
emotional state which has physical and psychological dimensions, and is associated with the 
awareness of either imminent or actual loss of a significant person (Udoh, 2000). The grief that 
occurs before death is generally referred to as anticipatory grief. This is well demonstrated in the 
significant relative (son or daughter) of a patient with terminal illness whose death was 
prolonged for two to three years. During these periods, the son has experienced grief and had 
actually worked through his grief during the period of the patient‟s agony while awaiting the 
inevitable end, so the son‟s feelings of guilt and anger had been reduced by the unrelented care 
he offered the patient. 
 Grief process, according to White and Gathman (1973), are divided into three stages. The 
first stage is manifested by Shock, disbelief, numbness, weeping and wailing with general 
agitation. This stage of grief is similar to denial and anger stages as classified by Kubler-Ross, 
this begins immediately after the death event and may last three to four days. In the second stage 
of grief, the survivor longs for the dead, recalls the happy memories shared and has visual 
27 
 
 
images of the dead. He is filled with sadness, unable to sleep, irritable and restless. This 
commences shortly after death and the maximum impact becomes obvious about the fourth week 
to three months after the death of the significant person. The period can persist for a year or 
more, the survivor exhibits a period of bargaining for the restoration of the deceased to life. The 
third stage is the grief resolution phase which occurs a year or more after the death of that 
person. It is similar to the acceptance stage in which the survivor is able to resume to ordinary 
life activities, to recall the past and the deceased without pain and to establish new relationships 
with others.  
 
2.2 Psychological support and palliative care 
 Psychological support is all forms of activities carried out to reduce the distress 
associated with burden of terminal illness, including the emotional aspect of care related to the 
illness. This type of support relates to the mind and involves some degree of mental activity 
which can be classified as an intellectual process (Farlex Clipart Collection, 2003). The National 
Council for hospice and specialist palliative care service (1997) has defined psychosocial care as 
the emotional and psychological well-being of the patient and their family/carers including issues 
of self-esteem, insight into an adaptation to the illness and its consequences, communication, 
social functioning and relationship. The council explained that psychosocial care addresses the 
psychological experiences of loss and facing deaths for the patient and their impact on those 
close to them. It involves spiritual beliefs, culture and values of those concerned and the social 
factors that influence the experience. 
Psychological support is the process of meeting a person‟s emotional, mental and 
spiritual needs, which are the essential elements of positive human development. Psychosocial 
support is needed by all in order to promote their psychological and emotional well-being as well 
as physical and mental development (Health link Worldwide, 2006). Psychological support helps 
to build resiliency in both adult and children faced with life threatening/life limiting conditions. 
It supports families to provide for the physical, economic, educational, social and health needs of 
their loved ones (Hearn, Lakes & Young, 2008). This, however, helps to build internal and 
external resources for them and their families. This makes them able to understand and deal with 
adverse events (Sheldon, 1997). 
 Additional psychological support can also be given by caregivers which serves to 
complement the ongoing support from families and communities. Psychological support is very 
28 
 
 
vital in the effective management of the terminally-ill (Burotta, 2010). Many things can have 
impact on a patient‟s psychosocial well-being, including poverty, conflict, neglect and abuse. 
Diseases like HIV/AIDS with cancer can compound these problems. As a result, they might 
experience traumatic events such as the illness and death of parent, violence, stigma, 
discrimination isolation and loneliness. Where psychosocial support is appropriate, it helps the 
patients and their families to provide for the full range of their needs (Monroe, 2000). This type 
of support should be part of comprehensive programming; it cannot be a stand alone service. The 
interventions should include a variety of approaches such as counselling, family therapy, 
memory work and succession planning (Isabelle, 2009). 
 Psychological support at the end of life is a difficult time for patients and their relations 
and carers. It is important that psychological care be provided to palliative care patients and their 
families in various ways through a range of medical nursing and allied health care professionals. 
Psychosocial support is needed for patients with terminal illness requiring palliative care. These 
illnesses include advanced cancer, end stage kidney diseases, heart failure, complicated lung 
disease and progressive neurological disorder (multiple sclerosis). WHO (2002) defines 
palliative care as the active total care of patient whose disease is not responsive to curative 
treatment control of pain and other symptoms, be it psychological, social and spiritual. The goal 
of palliative care, thus, includes:  
 Relief from pain and other distressing symptoms. 
 Affirms life and regard dying as a normal process. 
 Neither hastens nor postpone death. 
 Integrates the psychological and spiritual aspect of patient‟s care. 
 Offers a support system to help the family cope during the patient‟s illness and in their 
own bereavement. 
 Uses a team approach to address the needs of patients and their families, including the 
bereavement counselling if indicated. 
 Enhances quality of life and may also positively influence the course of illness. 
 Applicable early in the course of illness with other therapies that are intended to prolong 
life. 
The diagnosis may provide a range of emotional responses in the patient or family member 
which could involve fear of physical deterioration/dying pain/suffering, loosing independence 
from the consequences of illness or death of loved ones, anger at what has happened or what may 
29 
 
 
have caused such to happen, unsuccessful treatment, sadness at approaching the end of life, 
restriction of activities due to illness, guilt/regret for actions in some cases for contributing to the 
development of the illness, changes in sense of identity, adjusting to thinking of themselves as 
unwell, dependent on others for existence (Lloyd & Williams, 2008). Loss of self- confidence, 
sometimes related to loss of physical functioning/changes in appearance, confusion about what 
has happened, the future and choice available. Most terminally-ill patients develop psychological 
and psychiatric symptoms during the terminal phase of illness, either alone or in combination 
with physical symptoms (Miller & Walsh, 1996; Kasser, Malt & Hagen, 1998). Among many 
possible psychological and psychiatric complications, the most common are anxiety disorders, 
depressive disorders and cognitive disorders which can be major sources of suffering for patients 
and can pose significant management problems both at home and in institutional settings.  
The recognition of anxiety in the person with terminal illness can be challenging. 
Individuals who are anxious may present with a variety of symptoms, including subjective 
feelings of tension, apprehension and worry as well as overt signs of restlessness, hyperactivity, 
hypervigilance, sleeplessness, tingling and numbness physical manifestations of anxiety often 
which overshadow psychological or cognitive ones in patients with terminal or advanced illness 
(Holland, 1998). Anxiety can also arise from medical complications of illness or uncontrolled 
pain. In the dying patient, anxiety also may reflect impending heart attack or respiratory 
dysfunction or dehydration. Anxiety in terminal illness commonly results from medical 
complications, other considerations include the contribution of anxiety to non-compliance with 
medical care, family and staff reactions to the patient‟s distress and the balance between the risk 
and benefits of treatment. The management of anxiety in terminal illness also involves the use of 
appropriate medications (Holland & Massive, 1989). 
 The health care team relies on the presence of cognitive symptoms which includes 
feelings of worthlessness and hopelessness, excessive guilt and suicidal thoughts. For the 
professional to interpret feelings of hopelessness in the terminally-ill which may become an issue 
when there seems to be no hope for cure or recovery, this hopelessness and a sense of despair 
could be the cause of a depressive disorder. Knowledge of the disease condition and even the 
potent chemotherapeutic agents with their antecedent reactions poses a major predisposing factor 
for depression (Massie & Holland, 1990; Donnelly & Lynch 1995). To relief the terminally-ill of 
this depression, the clinician would manage him/her with a rapid acting psychostimulant while 
30 
 
 
the very ill that is close to death will most likely benefit from mild sleeping medications with 
pain relieving drugs given by infusion (Billings & Breitbart, 1995). 
 
2.3 Diversional support and palliative care 
This encompasses all forms of activities that can be used to turn the attention of the 
terminally-ill from the distressing state of his/her condition. Chochinov and Breitbart (2000) 
identified specific diversional intervention in palliative care which are psychological support, 
psychotherapy, behavioural cognitive therapies and educational therapies. The psychological 
therapies are used increasingly in palliative care, such as cognitive and behavioural therapies, 
adapted from the terminally-ill suffering from anxiety, depression or stress. These therapies 
explore the existing coping strategies and facilitate the development of new and effective 
strategies so that the patient can regain a sense of control. Guided/Imagery is another technique 
used to aid relaxation (Heaney, 1992), while others have used patient narrative to encourage 
reminiscence and to encourage a holistic approach by gaining insight into the patient‟s world. 
The specialist social workers in palliative care are involved in a range of intervention measures 
involving  patients, families, carers and the local community.  
Ashby (2007) explained that it is helpful to differentiate between therapies which patients 
believe might cure them and those that help them to live comfortably with their disease. Positive 
thinking strategies which obstruct appropriate care delivery may also need to be addressed 
skillfully. Psychosocial and Palliative Care Program Options Moffitt Centre is committed to 
providing patient with comprehensive palliative care from the time of diagnosis of terminal 
illness, throughout course of illness to the end, the diversional support and palliative care 
programme consists of a multidisciplinary team comprising neurologists, neuropsychologists and 
social workers that can provide pain management, individual and family counselling consultation 
and advocacy services. The neuropsychologist conducts comprehensive evaluation of cognitive 
and behavioural function using standardized tests and procedures. Regnard & Kindlen (2001) 
explained further that a diagnosis of terminal illness and the challenge that a treatment regimen 
present can understandably lead to distress for the patient as well as family members and friends. 
The palliative care team are available within every programme to assess each person and 
family‟s situation, which recommends effective ways of managing distress and other emotional 
and practical consequence of the illness. 
31 
 
 
Living with a terminal illness poses many challenges for patient and families. 
Professionally led support groups can provide a safe and affirming environment in which to learn 
alternative methods of coping, obtain information about the illness and its treatment, gain 
problem-solving skills, practise communication and alleviate feelings of isolation. For examples 
recognising the psychosocial aspect of breast cancer is one of the strengths of such programs. 
The support group, FACT (Fight against Cancer Together) was founded by those with such 
ailment and the group continues to provide both local and regional education for those within the 
group. Hospitalization and treatment of some terminal illness as highlighted in the submission of 
Sheldon (1997) may require follow up care at home or in a rehabilitation setting like hospice for 
optimal recovery. Some form of treatment may also be given at home to reduce the length of 
hospital admission. A clinical social worker and case manager work together to ensure the plans 
of care throughout the treatment period with proper coordination with the medical team. The 
social worker also helps to make arrangement for lodging in case the patient and family do not 
have an accommodation within the treatment area. All these coordinated efforts of the 
multidisciplinary team will enhance diversional support strategies for the terminally-ill.  
 
2.4 Counselling services and palliative care 
Counselling is a health advice and opinion. It is more than a solution to an immediate 
problem. Suggestions are essential features in effective palliative care management of the 
terminally-ill. This actually should be an integral part of care in order to help the patient and 
family to have up-to-date information about the illness and the best way to forge ahead in the 
face of uncertainty (Babalola, 2007). Counselling plays a vital role in palliative care practice as it 
is a confidential discussion between the patient and their care provider. The terminally-ill 
requires counselling on every step of his mode of management to be able to make informed 
choices and decision related to his health. The significant family member could only be involved 
if the patient requests for such or if the person is very ill, nearing death or unable to 
communicate. This type of counselling is issue centred and goal directed and takes place in form 
of a dialogue which helps to provide options to clients for decision-making and behaviour 
change.  
Fagbenle (2006) stressed further that it should be focused on immediate pressing problem 
of the terminally-ill and thus encompasses area related to the feelings and emotions of the 
counsellee. The type of counselling varies according to the diseased condition of the client and, 
32 
 
 
as such, a good counsellor has to be knowledgeable and have up to date information about the 
client‟s condition. A good counsellor has to be empathic, non-judgemental, reliable and 
trustworthy. Onyeka (2010) identified the need for a good counsellor to be cheerful and polite, 
should be a good listener and be very observant. The nature of terminal illness, receiving 
palliative care requires reliability from the multidisciplinary team and the principle of 
confidentiality is important as whatever is discussed remain between the patient and the 
counsellor. All patient information should be kept private and is only shared among other health 
workers involved  in the care only on a “need to know” basis. All medical records and registers 
are kept secured.  
Babalola (2007) explained the uniqueness of counselling during terminal illness that it 
should centre around giving psychological support for the client, and should provide culturally 
sensitive interventions. It requires paying attention to psychological reactions of client and lastly 
open discussion about death could be necessitated especially if the client is nearing end of life. 
The social-cultural context need to be borne in mind during counselling as they need to realize 
that culture and tradition have great impact on people‟s attitude, ideas about illness and death. 
The counsellor therefore needs to be sensitive to cultural differences and respect them. The 
following are common features to all types of counselling: the time should be appropriate and 
adequate for effective transfer of information and behaviour modification, counselling session 
should not be rushed or unnecessarily prolonged, but should allow for good rapport and trust. 
The accessibility of care should be convenient both for the terminally -ill and other care givers. 
Arrangement can also be made for home visit if such is indicated and the counsellor should be 
available (even through phone numbers) the health care team should appreciate the stress caused 
by fear of being diagnosed with terminal illness, should the patient become hostile and 
aggressive, the care provider should accept the consequent emotions and reactions of clients and 
that of their relations. Trust is an essential element of counsellor-client relationship which is built 
on the understanding that whatever is discussed remains confidential between them. 
 
2.5 Social support and palliative care 
 Social support is the perception and actuality that one is cared for, has assistance 
available from other people and that one is part of a supportive social network. These supportive 
resources can be emotional, tangible, informational or companionship in nature (Wills & Clark; 
1995). Social support has a complex effect on the individual, but it is calming and positive. It 
33 
 
 
may, however, change one‟s assessment of the stressful event or prevent the individual from 
engaging in damaging behavioural responses. 
 Taylor (2011) viewed that social support can be measured as the perception that one has 
assistance available, the actual received assistance or the degree to which a terminally-ill person 
is integrated in a social network. Support can come from many sources such as family, friends, 
pets, organisations and co-workers, etc. The need for social support of patient with terminal 
illness remains pivotal for the palliative care practitioner (Ashby, Rissane & Beadle 1998). 
Attending to the social needs of the terminally-ill and those of their family is an integral part of 
caring in accordance with palliative care approach. Social care/support is specifically concerned 
with the mental and emotional well-being of the patient and their family carers including issues 
of self esteem, self efficacy, insight into and adaption to the illness and its consequences, 
communication social functioning and relationship (Dix & Glickman, 2002). The Council for 
hospice and Specialist Palliative Care (2000) emphasised the importance of social care in 
palliative care and reported that “The social fabric of their lives is central to how they make 
sense of their illness experience, the meaning they draw upon to understand these and the range 
of resource they can call upon to help them manage them”. In practice, the social aspects of 
palliative care are often limited to a focus upon the patient‟s family ignoring community 
influences. The terminally-ill may feel a sense of loss of control, fear or anger. Their relatives 
too may be experiencing these emotions and the sad consequence is that these often cause a gap 
between them. 
 Clark (2002) stated that the challenge facing palliative care is how to reconcile the high 
expectations of technical expertise which calls for a humanistic and ethical orientation to the 
care. There is a concern to understand what best practice is, and what the experience is like for 
the patient, the carer and professional. Psychosocial aspects of palliative care have to be the 
concern of all the team because all the elements, comprising total pain require attention if 
suffering is to be relieved and quality of life improved. In psychosocial assessments, the health 
care professional needs to assess individual strengths, coping styles and experience which would 
vary from one person to the other. The time invested in this initial assessment is not wasted, but 
rather build a firm foundation for the patient professional-partnership. The initial assessment 
may indicate the need for more formal psychological or social assessment. Monroe (1998) 
stressed the need to maintain autonomy which includes respect for dignity and the opportunity to 
exercise choice and support. Jeffrey (2003) also emphasised the need to assess the ways in which 
34 
 
 
the illness has changed the life of the individual, this will identify any unfinished business, the 
impact of the disease on their relationship and concepts of body image may identify 
psychosexual issues that need to be addressed, the assessment should also include the meaning of 
the illness to the patient and his family, his hopes and fears for the future. Morgan (2000) 
revealed that psychosocial issues involve the understanding of the ethnic, cultural and religious 
background of the terminally-ill and also the potential impact of these influences on the 
individual and their families/carers. All these should be based on an understanding of loss and 
change, family dynamics counselling and knowledge of social policy and resource. 
It is important for the social needs of the patient and carers to be assessed, so that 
appropriate levels of support and treatment can be offered. A social approach is a patient and 
family-centered approach, and is vitally important as it represents a mechanism for retaining the 
holistic approach of modern palliative care. Social care can restore many of the original value 
and vision of palliative care to a specialty threatened by increasing medical technology. Clark 
(2002) opined that modern palliative care has persuaded doctors to be gentler in their acceptance 
of death. The influence of advancing medical technology has led to the adoption of futile 
treatment and an assumption in society that every cause of death, can be resisted, postponed or 
avoided. Advocacy is an important attribute of social support. Providers of this support serve as 
advocates by motivating and empowering recipients to act on their behalf. Reassurance, 
reinforcement, affirmation and encouragement are common advocative strategies that can be 
employed in an atmosphere of unconditional positive regard and caring (Tichon & Sapiro 2003). 
The initial social support given to the terminally-ill will help to improve his/her wellbeing; it 
boosts the immune system as well, thus, helps in preventing psychological depression (as a result 
of terminal illness). According to Weber (1998), the kind of social support can be further 
classified into multiple types, namely, informational support, emotional support, appraisal 
support and instrumental support – informing an individual of the typical course of illness 
provides support through information given, expressing care  and affections for someone 
provides emotional support, providing evaluation about a person‟s ability to achieve a goal is 
appraisal support providing material resource such as food or money to assist someone is 
instrumental support. 
Jutilee and Khan (2007) submitted that social support and social network show positive 
effect on health and wellbeing of people required at every stage of life. Researchers commonly 
make a distinction between perceived and received support. Perceived support refers to a 
35 
 
 
recipient‟s subjective judgement that providers will offer (or have offered) effective help during 
times of need while received support refers to specific supportive action (advice/reassurance) 
offered by health care providers during time of need (Ucheno, 2004). Furthermore, social support 
can be measured in terms of structural support or functional support. Structural support (social 
integration) refers to the events to which a recipient is connected with a social network like the 
number of social ties or how integrated a person is within his or her social network, family 
relationships, friends and membership in clubs and organisations contribute to social integration. 
Functional support looks at the specific functions that members in this social network can 
provide. The different types of social support have different correlations with health and personal 
relationship (Cantor-Grace 2007). 
Bolen (1999) and Canto-Grace (2007) explained further that social support can come 
from a variety of source including (though not limited) family, friend, romantic partner, pets, 
community ties and co-workers. Source of support can be natural (i.e. family and friends) formal 
(mental health specialist or community organizations support from a romantic partner is 
associated with health benefit, particularly for man). Early familial social support has been 
shown to be important in children‟s ability to develop social competencies and support parental 
relationship. 
 
2.6 Spirituality and palliative care 
 Spirituality is culled from latin word “spiritualitas”. It can be defined as whomever or 
whatever gives one a transcendent meaning in life. It is often expressed as religion or 
relationship with God, but can also refer to other things, nature energy, force, belief in the good 
of all, belief in the importance of family and community. The spirit is the essence of the person 
(Puchaiski, 1999). The spiritual part of each person can bring wholeness to the emotional, 
physical and intellectual parts of life. One‟s beliefs and values can profoundly affect how a 
person copes with illness and with the management of illness. Hence, spirituality is important 
during all phases of health and illness, though spiritual and religious factors play an especially 
prominent role in a patient‟s experience with terminal illness, the dying process and death 
(Macgans 1999). 
 
2.6.1 Characteristic features of spirituality  
 Personalized system of beliefs. 
36 
 
 
 Broad term with varied definition related to issues of meaning hope, purchase 
relationship and seeking answer to universal questions of life and death. 
 One‟s search for meaning. 
 One‟s faith system (everyone has a faith system, atheism also constitute a kind of faith 
system). 
 Personal system of beliefs that give order and meaning to life. 
 Based on the unseen and the unknown. 
 One‟s relationship to his/her supreme being. 
 May be religious or philosophical expressed or unexpressed. 
 Individualised, personal, experiential and dynamic. 
 Spirituality is free and open. 
 Religion and spirituality are not the same, but are overlapping concepts. 
 Some people who see themselves as spiritual do not formally endorse a religion. 
 Some people who are religious are not spiritual. 
In palliative care, the carer should ask himself what gives meaning to life. This could be 
friends, carer, family, nature, ant animals, music, a higher power. Ask the patient what gives 
meaning to his life and also recognise what gives meaning to their lives. All these meanings 
should be included in the plan of care. In illness, a lot of questions come to mind which include 
why is this happening to me? How will I be remembered? How can I be forgiven? It should be 
acknowledged that there may not be concrete answers to these questions but must understand 
that the question itself is an expression of patient grief. 
Saunders (1967), the founder of the hospice movement describes the intense suffering by 
dying patients and their family members as “total pain”, including physical, social, psychological 
and spiritual pain (all are interactive). Spiritual pain, thus includes, loss of meaning, loss of hope, 
loss of identity due to lost roles, lost activity and lost independence, anger of God, sense of 
betrayal, abandonment by God, disruption in one‟s faith system, fear of God or punishment and 
need for reconciliation/forgiveness. Spiritual healing as well as psychological and emotional 
healing can happen even when physical cure is not possible. Openness to spiritual healing will 
often be shaped by one‟s image of or experience of God. Personal thoughts and forgiveness, 
religion can also aid spiritual healing by supporting communities of faith, offering ways to 
concretise spirituality and offering responses to universal questions. Bolen (1996) addressing 
unfinished business, particularly reconciliation with God family, friends and others is still part of 
37 
 
 
spiritual healing. Opening gradually to a large understanding of life can assist individuals to 
perceive healing even in death. 
Usually, when nearing the end of life in palliative care, spiritual concerns have to be 
included in treatment plan. For example, a chaplain should be consulted, recommendation for 
meditation and relaxation will be necessitated; the belief system of the patient must be respected. 
The carers must be sensitive to the patient‟s specific religious beliefs and needs around the 
experience of suffering and death. Assess to spiritual resources should be provided and this 
entails referring to the hospital chaplain, the hospice chaplain, the patient‟s parish priest, 
minister, Rabbi or Imam (Weissman, 2007). 
Religion and spirituality are among the most important cultural factors that give structure 
and meaning to human values, behaviour and experiences (Lukoff, Lu & Turners, 1995 as cited 
by Mueller Plevak & Rummans, 2001 ). For patients at end of life, spiritual and religious 
concerns may be stirred, or made stronger, they may question their faith or examine it more in 
depth. Puchaiski (2007) opined that spirituality is important during all phases of one‟s health and 
illness, but spiritual and religious factors play an especially prominent role in a patient‟s process 
and death. He went further to explain that “illness is both soul shaking and social evoking for the 
patient and for the significant others, to whom the patient matters, innocence is lost, vulnerability 
becomes inevitable and the person is no longer who he was before the onset of illness and will 
never be the same”. According to  Ambuel (2001), during times of illness and crisis, people may 
find that their spiritual needs increase, the terminally-ill patients and their families get strength 
and hope from spirituality, which is an ongoing issue – a part of the patient‟s journey not, 
something to be addressed at the last minute. Paying attention to spiritual needs can contribute to 
an increased quality of life (Bolen, 1996). Reviewing the aspect of religion, its features were as 
follows: 
 Religion derived from the word “religion” meaning to bind together. 
 More structured belief system that addresses universal spiritual questions. 
 Provide a framework for making sense of the meaning of existence. 
 Religion rites and rituals provide a concrete way of expressing spirituality. 
 Most religions expect general adherence to a particular body of beliefs (doctrines) 
regarding one‟s relationship with God. 
 Corporate (group based) structured and organized.  
38 
 
 
These psychological concerns also overlap with spiritual anxiety. These might be fears 
about what happened after death or existential question about the meaning of life. This is 
common when someone is facing the end of their life or of someone close to them (Williams, 
2006 as cited in Lloyd Williams, 2008). However, the patients illness may have a number of 
social consequences for themselves and those close to them (Sheldon & Monroe, 1999; Hearn, 
2008; Lloyd & Williams, 2008). The illness may have impact on the patient‟s ability to perform 
everyday social task (i.e activities of daily living which includes shopping, cleaning laundry, 
paying bills etc). The illness may render the patient unable to perform previous social roles such 
as parenting, caring for a sick/elderly relative or maintaining paid employment. Spirituality has a 
significant bearing on hope, and this applies to both adult and young who experience terminal 
illness. Hope is intimately bound with loss and suffering. As Marcel (1998) observed, “hope is 
situated within the framework of the trial”. It is the paradox that manifests itself so fully at the 
end of life. In the view of Ersek and Cotter (1999) the critical role that hope plays in human life 
takes on special meaning as death nears. The ability to hope is often challenged, and it can 
include patient and families during terminal illness. Hope for a cure is almost certainly 
destroyed. Many patient‟s and families experience multiple losses as they continue an illness 
trajectory that is marked by increasing disability and pain.  Even when hope appears to be strong 
within the dying person, it can be problematic. Hopefulness is perceived to be based on 
unrealistic ideas about the future. Important issues may be left unresolved as individuals continue 
to deny the reality of impending death. Hope is an important concept for many disciplines 
including philosophy, theology, psychology nursing and medicine (Farran, Herth & Popovich 
1995).  
Dufault (2001) also theorised that hope has two interrelated spheres, particularized and 
generalized. Particularized hope is centred and depended on specific, valued goals or hope 
objects. An example is the hope of a terminally-ill patient to live long enough to celebrate a 
particular event. In contrast, generalized hope is a broader, non-specific sense of a more positive 
future that is not directly related to a particular goal or desire. Dufault likened this sphere to an 
umbrella that creates a diffuse positive glow on life. Dufault (2000) postulated six dimensions of 
hope which are affective, spiritual, relational, cognitive, behavioural and contextual. The 
affective dimension of hope encompass a myriad of emotions, hope is accompanied by many 
positive feelings including joy, confidence, strength and excitement. The full experience of hope, 
however, includes uncertainty, fear, anger, suffering and sometimes despairs. Marcel (1998) 
39 
 
 
argued that in its fullest sense, hope could only follow an experience of suffering or trial, 
Marcel‟s thesis is corroborated by the experience described by people with terminal illness who 
see their disease as a “wake-up call‟‟ that has opened their eyes to a greater appreciation for life, 
and an opportunity for self-growth.In other words, it is  an event that has forced them to confront 
their mortality while also inspiring hope. The spiritual dimension is a central component of hope 
(Herth & Gibson, 2003).  
Hopefulness is associated with spiritual wellbeing. These activities include religious 
beliefs and rituals but extend to broader conceptualization of spirituality that encompass meaning 
and purpose in life. Serious illness and suffering can challenge one‟s belief and trust in a 
benevolent deity or be viewed as punishment from God, either interpretation of suffering can 
result in hopelessness. Relationships with significant others is another important dimension of 
hope. Hope levels are positively associated with social support (Johnson & Harris, 2001; Ebright, 
2002) reported that the HIV peer-counselling relationship inspired hope, despite being vital 
sources of hope, others can threaten the terminally-ill by distancing themselves from him/her 
showing disrespect, regarding the patient‟s experience, disclosing negative information or 
withholding information. 
 The cognitive dimension of hope encompass many intellectual strategies particularly 
those involving specific goals that require planning and effort to attain. If one repeatedly fails to 
attain valued goals, hopelessness and passivity can result. The behavioural hope is strongly 
associated with coping. Hope has been identified as a foundation or mediator for successful 
coping. Activities that foster hope are similar to the problem focused coping strategies originally 
described by Lazarus and folkman (1984). Strategies to maintain hope include problem-focused 
coping method (e.g setting goals actively and getting one‟s affairs in order) and emotion focused 
strategies i.e using distraction techniques, appraising the illness in non-threatening ways. 
Contextual dimensions of hope, however, are life circumstances and abilities that influence hope. 
This includes physical health, financial stability, functional and cognitive abilities. Common 
threat to hope as postulated by Harwood (2002) and  Evangelista (2003) are acute, chronic and 
terminal illness, cognitive decline, fatigue, pain and impaired functional status. These invariably 
decrease hope, if people are able to overcome the threat through cognitive, spiritual, relational or 
other strategies. 
 Children are also faced with terminal illness; the commonest of this illness is cancer 
which can affect any part of body. When this happens, spiritual care is also paramount within 
40 
 
 
which hope is embedded. In an early study, Stern, Wright and Shontz (2010) study hope in 
children with chronic disabilities, and in the significant adults in their lives (e.g., parent, teachers, 
and physical therapists). Both the children and the adults were interviewed, allowing for the 
identification of differences between the two samples. The investigator found that hope for the 
children in their study was two-dimensional which involved an awareness of the positive and a 
sense of time orientation. For younger children, hope was present-focused, whereas hope in older 
children, had a future orientation. Younger children also saw adults as being in control of a 
situation, and were less concerned about assessing how realistic their particular hopes were. In 
contrast, adults actively assessed the realities of the present and possibilities for the future. 
Artinian (1984) explored hope in older children, aged 10 to 20 years, who underwent bone 
marrow transplantation. The finding suggested that ways to reduce stress and instil hope among 
younger patient and their parents include managing physical discomforts, making children and 
parents feel cared for, being non-judgemental when children and parents vent anger, preventing 
boredom, and assisting with making and altering plans. A programme of research by Hinds and 
colloquies (1999) elucidated the experience of hoping in adolescent.  
Hinds defined adolescent hopefulness as possessing a comforting or life-sustaining, 
reality-based belief that a positive future exists for self and others. Interestingly, the inclusion of 
the phrase “and others” arose from the sample of adolescent cancer patients. He found that only 
in this sample did adolescent express a concern and articulate their hopes for others. Examples of 
this attribute included such hopes as “My parent will be O.K if I die,” and “There will be a cure 
soon so patient „X‟ will not die”. This ability to go beyond oneself and hope for others may be 
influenced by the adolescents‟ sense of mortality that accompanies the diagnosis of terminal 
illness. Despite the stress of life-threatening illness, many adolescents are able to remain hopeful. 
Ritchie (2010) examined hopefulness and self-esteem in 45 adolescents with cancer. She found 
that the average hopefulness and self-esteem scores for her sample were as high as those for 
healthy adolescents. Moreover, high self-esteem was an important predictor of hopefulness. 
These results suggest that teens are able to respond to serious illness with intact self-esteem and 
hope.  
Although, Esbensen (2008) said chronic illness that impairs physical functioning is linked 
with decreased hope, diagnosis of a life-threatening disease is not associated with low levels of 
hope. This finding may reflect on attitude among older adults that the quality of life that remains 
matters more than the quantity. Among younger European American adults, hope tends to be tied 
41 
 
 
to being productive. Personal and professional achievements feature prominently in one‟s ability 
to nurture and maintain hope. In contrast, older adults are more likely to focus on spirituality, 
relationship, leaving a legacy focused on others, and other factors that are not linked with 
accomplishment. Hope-fostering activities include reminiscing, participating in purposeful 
volunteer activities, religious activities, and connecting with others. Summarily hope is central to 
the human experience of living and dying and it is integrally entwined with spiritual and 
psychosocial well-being. Although terminal illness can challenge and even temporarily diminish 
hope, the dying process does not inevitably bring despair. The human spirit, manifesting its 
creativity and resiliency, can forge new and deeper hopes at the roles in supporting patient and 
families by providing expert physical and spiritual care. Fostering hope is a primary means by 
which palliative care givers accompany patients and families on the journey through terminal 
illness (Ebright & Lyon, 2002). 
 
2.7 Rehabilitative support and palliative care 
Rehabilitative service provide complete patient rehabilitation following an illness, injury 
or surgery with the aim of helping patients and their carers achieve maximum potentials through 
a multidisciplinary therapy approach. This, essentially, is all about restoration to normal life or 
near to normal in the event of a terminal illness that have affected the normal functioning of 
body parts of the sufferer (Oxford Advanced Learner‟s Dictionary 2000). Patients are usually 
referred to the rehabilitative section of the health care facility to benefit from the various 
activities that are made available for these vulnerable clients. A multidisciplinary team of 
medical, nursing, social worker, occupational therapy, physiotherapy, speech therapist, 
pharmacy, pastoral care, dietetics, clinical and neuropsychologist all work together to ensure the 
best outcomes for all patients. There is a health directorate on aged care and rehabilitative care; 
these services include prevention assessment, diagnosis, treatment support and rehabilitation for 
older people (Mueller 2001). 
Psychosocial rehabilitation involves interventions which help patients to manage 
behaviours, perceptions and reactions to the injury or condition which may hold back the process 
or recovery or maintenance of one‟s wellbeing. A rehabilitation programme focuses solely on a 
package of psychosocial interventions. However, it is more likely that activities will be offered in 
conjunction with medical and or vocational rehabilitation services. The aim is to change one‟s 
perception of injury, pain, future loss and life changes which can undermine recovery and 
42 
 
 
wellbeing. It helps to alleviate anxiety associated with accepting an injury and the recovery 
process and assist in maintaining or improving wellbeing. Psychosocial interventions help 
address issues which can undermine and act as barriers to progressing rehabilitation. 
Psychosocial interventions, recommended by a rehabilitation service provider, may include 
measures such as: general psychosocial counselling, adjustment/family/relationship counselling, 
parenting support anger management, basic life skills training, involvement in community 
support service, self-help or chronic disease/illness support groups, health/fitness and exercise 
regimes, lifestyle programs, financial counselling, attendant care, home support and accessing 
accommodation service, (Australian Government Journal on Veteran‟s Affairs, 2010). 
According to Okikiolu (2003), rehabilitation services are provided in as normalized an 
environment as possible emphasis is on the here and now rather than on problem from the past, 
work is central to the rehabilitation process. Emphasis is on social rather than medical model, all 
people have underused capacities that they can develop; all people can be equipped with skills 
centered on clients‟ strengths rather than on pathologies. The rehabilitation service department of 
every health care facility involved in palliative care delivery for the terminally-ill offers in 
patient and outpatient service which includes physical therapy, occupation therapy and speech 
therapy (Oshin, 1999). Specialized treatment is provided on a one-on-one basis. Individualized 
treatments are designed by therapist to address each individual‟s specific needs and goals. 
Akinpelu, (2000) explained that physical therapy is designed to restore and maximize functional 
independence, relieve pain and promote quality of life. Patient and family education is always an 
important part of every treatment plan. Physical therapy is carried out with the assistance of the 
physiotherapist, their function is to restore strength and function back to body parts that the 
illness has affected e.g weakness of the limb. Assisted exercises are done to restore some, if not 
total function back to the body part affected. 
This goes on in sessions and particular attention is paid to the general condition of the 
patient so as to determine the extent of physical therapy, the health status can cope with. 
Occupational therapy helps in rehabilitative process as it has or plays dual functions from the 
recipients of this service. The patients are taught to use their hands in whatever forms of skill 
they can learn and imitate. Such therapy includes knitting, sewing, shoe making, artistic 
presentation, weaving baskets and others. Being able to do some of this could both serve as 
diversional therapy and improve their cognitive ability. Thus, depression could be minimised, if 
they think less of their sickness (Johnson, 2001). The speech therapist helps patients that suffer 
43 
 
 
loss of speech from illness (stroke affecting speech or cancer of the voice box), although might 
be difficult to restore the full speech but at least some degree of improvement can be achieved. 
The availability of such facility within a comprehensive health institution offers appreciable 
degree of comfortability for the terminally-ill. He/she feels being cared for, supported and, thus, 
the remaining period of her life would be meaningful and not being made to feel relegated. 
Rogers (1967), founder of client centred therapy, believed that the goal of therapy was to help 
the patient examine present choice and make decisions about his/her care client-centred therapy 
or non-directive therapy is a form of treatment in which the client understands his or her present 
health situation and the choice of management (rehabilitative therapy available) and therapy 
decides what the goal of treatment would be. Family member‟s involvement becomes very 
paramount with that of the health team. This sort of rehabilitative service provides a comfortable 
and supportive atmosphere for the patient and gives him another lease of life. 
In rehabilitative service, controlling reinforcement can be used. This is a technique in 
which the patient is given a reward for cooperative behaviour towards his recovery strategies. 
For example, in life limiting illness, patient may have emotional outbursts when he/she does not 
get his way. This might be in a bid to get attention, if such action is ignored, they will be able to 
recover from the emotional outburst faster, and can have a reward for acting maturely. 
Desensitization is another rehabilitative techniques, this is used to help  the patient overcome 
fear and anxiety, by gradually learning to cope with increasingly stressful situations. Thus, anger 
can be expressed gradually to the person offering rehabilitative service, then to a friend and 
gradually to the persons that are not nice to the patient. Modeling is a technique in which the 
patient learns to handle a given situation by observing how someone else would respond to a 
similar situation. This is usually for the better and turns out to help the patient have some degree 
of health restoration, and should the inevitable happen, he would exit with a reassuring frame of 
mind. Group therapy is also helpful in rehabilitation. It involves those patients who are focusing 
on specific life events, usually conducted in a relaxed atmosphere. Individual participants can 
share and benefit from the experience of others. (British Medical Journal, 2009). 
 
2.8 Regular visitation and palliative care 
The basic need of a terminally-ill is communication as well as being cared for, by 
significant persons in his existence. A greater percentage of people would like to be informed if 
they have a terminal illness. When this occurs care may be in the hospital, hospice palliative care 
44 
 
 
centre or the patient‟s home, whichever of these places, the terminally-ill‟s regular visitation 
becomes paramount (Sheldon, 1999). At this sensitive and significant period of the sick person‟s 
life, they become aware of attitude displayed towards them by both family members and health 
team spiritual support is very important during this period. So, the chaplain, religious groups, 
imam or rabbis play important roles in the life of the dying patient. They pay regular visits to 
them. Some churches or mosques organise hospital evangelism during which they visit them, 
play with them, give them gifts like provision, and other food items. This helps improve 
emotional state (Jcaho, 2011). The visitations provide support to the patients. Long term caring 
for the terminally-ill can be a chronic stressor that can be associated with anxiety, depression, 
alteration in the immune system and increased mortality. However, providing support has health 
benefits as well as instrumental supports to friends, relations and neighbours.  
However, emotional support to spouses has been linked to a significant decrease in early 
mortality. According to Heltz (2000), dying persons have the need to feel valued and accepted, 
maintain confidence and self-esteem, have their feelings known, be assured of being remembered 
and also participate in decision-making activities. The hospice becomes very appropriate for the 
terminally-ill in which the person can die with dignity. The hospice is a facility or program of 
caring for terminally-ill persons and of counselling their families. This concept is carried out in a 
home like atmosphere for the terminally-ill. Though this can be arranged in the person‟s home if 
the facility for that is available. People can visit such ill patients as they like without restriction. 
So, the final days of the terminally-ill are made to be as meaningful and pleasant as possible. 
 
2.9 Family integration in palliative care 
Recognising the importance of a family necessitates clearly the definition of what is 
meant by “family.” Most often, families in palliative care do consist of patients, their spouses, 
and their children. But in today‟s world of divorce and remarriage, step-relatives must also enter 
into the family portrait. In other instances, people unrelated by blood or marriage may function 
as family (Panke 2004). Therefore, the definition of family must be expanded. The family is a 
group of individuals inextricably linked in ways that are constantly interactive and mutually 
reinforcing. Family can mean direct blood relatives, relationships through an emotional 
commitment, or the group of persons with which an individual feels most connected (Field & 
Cassel, 1997). Moreover, family in its fullest sense embraces all generations - past, present, 
45 
 
 
future; those living, those dead, and those yet to be born. Shadows of the past and dreams of the 
future also contribute to the understanding of families. 
Palliative care programs are based on the principle that the family is the unit of care. In 
practice, however, the family is often viewed as a group of individuals who can either prove 
helpful or resist efforts to deliver care. Nurses and other health care professionals must strive to 
understand the meaning of the palliative experience to the family (Andershed, 2004). If quality 
care is to be provided, palliative care provider need to understand how all family members 
perceive their experience, how the relationships fit together, and that a multitude of factors 
combine to make families what they are. However, only recently has research gone beyond 
focusing on the needs of dying patients for comfort and palliation, to addressing issues relevant 
to other family members. Much of research has focused on the family‟s perceptions of their 
needs, (Martin, Berwich & Fyles, 2008), experiences and challenges faced, adaptation and 
coping skills required for home care, the supportiveness of nursing behaviours or physician 
behaviours and satisfaction with care. Most research has focused on families of patients with 
cancer and other terminal illness, (Rhodes, Mitchel & Miller, 2007). 
WHO (2000) defined palliative care as an essential component of comprehensive 
package of care for people with terminal illness, it is an important aspect of care that uses a team 
approach to address the needs of the patients and their families including bereavement 
counselling if indicated. The recognition of the family as the unit of care and their support and 
education are vital. (Tanchel, 2003) affirms that it is important to give time to family members to 
talk as individuals as well as in a group. There is a close connection between the family, the 
patient and the disease. In palliative care, the creation of a safe place for families to talk is 
important. Communication becomes constricted as members try to protect one another from 
painful feelings, families, thus, need help as the patient either withdraws or wants constant 
attention. Parkes (2002) highlighted three major issues that can emerge even in well-functioning 
families which are: acquiring information, concealing feelings and coping with helplessness. 
Tanchell (2003) reaffirms that neutrality is important and at all times, practitioners should be 
sensitive and aware of their role within the family. Monroe (1999) warns “if the family finds 
balance only with his famly rather than helping them find solution”, It will create more problem. 
The diagnosis of terminal illness is traumatic for everyone, hence the knowledge and 
understanding of the crisis is important as everyone‟s realities change within seconds. All that 
was once certain becomes uncertain and the emotional and physical resources of the entire 
46 
 
 
family are threatened. Even referral to palliative care service is experienced as a major crisis. 
Family often means more than blood ties with the patient. It stands, for those relationships that 
are significant for the patient. A network of attachments existing within a social and cultural 
context. Thus, friends, neighbours and work colleagues may be equally important and equally 
affected by the diagnosis of terminal illness. 
Findings make it clear that family members look to health professionals to provide 
quality care to the patient. Family members also expect health professionals to meet their own 
needs for information, emotional support, and assistance with care (Rhodes & Mitchel 2008). 
Much of the research that purports to address the impact of terminal illness on the family is 
based on the perceptions of individuals either the patient or adult family members (usually the 
spouse). Many of the studies were conducted retrospectively, that is, after the patient‟s death. But 
even studies conducted during the palliative period frequently exclude the patients who is the one 
at the center of the palliative care situation. Examining palliative experience of the family unit 
has been rare. Davies (1995) identified the basis for offering optimal support to families in 
palliative care, and the research findings that prospectively examined the experiences of such 
families. The common view is that transitions are initiated by changes, by the start of something 
new. However, as Bridges (1998) suggests, most transitions actually begin with endings. This is 
true for families living with serious illness in a loved one. A transmission that families 
themselves labeled as “fading away.” The transition of fading away for families facing terminal 
illness began with the ending of life as they knew it. They came to realise that the family 
member was no longer living with terminal illness, but was now dying from the illness. Despite 
the fact that family members had been told about the seriousness of the prognosis, and had 
experienced the usual ups and downs associated with the illness trajectory, for many, the 
realisation that the patient‟s death was inevitable, thus becomes evident. A patient once 
commented: 
  
My body has shrunk so much the other day, I tried on my favorite old 
blue dress and I could see then how much weight I have lost. I feel like a 
skeleton with skin! I am getting weaker. I just can‟t eat much now, I don‟t 
want to. I can see that I am fading. I am definitely fading away. ( 
palliative care patient 2008:1015) 
 
The transition of fading away, according to Davies and Steele (2010), is characterised by 
seven dimensions: redefining, burdening, struggling with paradox, contending with change, 
47 
 
 
searching for meaning, living day by day, and preparing for death. The dimensions do not occur 
in linear fashion; rather, they are interrelated and inextricably linked to one another. Redefining, 
however, plays a central role. All family members experience these dimensions, although 
patients, spouses, and children experience each dimension somewhat differently. Varying disease 
trajectories for other conditions, such as dementia, also influence the nature of support that health 
carers provide for patients and families. For example, in a comparative study of staff‟s 
assessment support needed by families of dementia and cancer patients, staff in dementia care 
stressed significantly more, the need for forming support groups for families, offering respite 
care, educating families, and trying to relieve families‟ feeling of guilt. In the cancer-care group, 
staff assigned greater importance to being available to listen, creating a sense of security, and 
supporting the family after death (Albinson & Strang 2003).  Furthermore, clinicians are in ideal 
positions to advocate with politicians and policy makers to expand resources for home-based 
palliative care programs so that families can adequately and humanely be supported in their 
caregiving work. 
Baker and Teno (2000) explained that supporting patients and other family members with 
redefining requires that health care providers appreciate how difficult it is for family members to 
relinquish familiar perceptions of themselves and adopt unfamiliar, unwelcome, and unasked - 
changes to their self-perceptions. Disengagement from former perceptions and the adoption of 
new orientations occur over time. Nurses and other care providers are challenged to help family 
members anticipate and prepare for what lies ahead, while not pushing them at a pace that 
threatens their sense of integrity. Each family member redefines at his or her own pace; 
interventions must be tailored according to the individual needs. At the same time, health care 
providers must support the family as a unit by reassuring family members that their varying 
coping responses and strategies are to be expected. 
Opportunities should be provided for patients to talk about the losses incurred due to the 
illness, the enforced changes, the adaptations they have made, and their feelings associated with 
these changes, reinforce their normal patterns of living as long as possible and as appropriate. 
When they can no longer function as they once did, they can be encouraged to focus on what 
they can do, reinforcing those aspects of self that remain intact (Vachon, 1998). Acknowledging 
that roles and responsibilities may be expressed in new and different ways, and suggest new 
activities appropriate to the patient‟s interest and current capabilities. The focus with spouses and 
children centers on explaining how the disease or treatment contributes to changes in the patient 
48 
 
 
physically, psychologically, and socially. Temo, Cassey (2009) submitted that spouses should be 
allowed to talk about how changes in the patient affect their marital relationship, help children 
appreciate their parent from another perspective, such as in recalling favourite memories or 
identifying the legacies left, discuss how they can face their own vulnerability by channeling 
concerns into positive steps for self-care, reinforce the spouse‟s and children‟s usual patterns of 
living for as long as possible and as appropriate when former patterns are no longer feasible, help 
them to consider adjustments or alternatives (Kissane & Kenzie, 2003), providing opportunities 
for spouses to discuss how they may reorganise priorities in order to be with and care for the 
patient to the degree they desire. Considering resources that enable the spouse to do this, the 
assistance of volunteers, home support services, or additional nursing services is most 
appropriate as postulated by Bridges (1999).  
Caregiving techniques can be taught if the spouse shows interest. With the children, the 
degree to which they want to be open or private about their parent‟s illness with those outside the 
family must be respected. It should also be acknowledged that family members will vary in their 
ability to assimilate changes in the patient and in their family life. Palliative care team members 
must realise that not all families communicate openly or work easily together in solving 
problems. Nurses, in particular, can support patients and family members to contend with change 
by creating an environment in which families explore and manage their own concerns and 
feelings according to their particular coping style. Providing information so that families can 
explore various alternatives helps them to determine what adjustments they can make. They can 
make information available not only verbally but also in writing. or, tape-record informative 
discussions so that families can revisit what they have been told (Davies & Seele 2000). 
Rituals can be helpful during periods of terminal illness. A family ritual is a behaviour or 
action that reflects some symbolic meaning for all members of the family and is part of their 
collective experience. A ritual does not have to be religious in nature. Rituals may already exist, 
or they can be newly created to assist the family in contending with change. For example, the 
writing of an “ethical will,” whereby one passes on wisdom to others or elaborates on his or her 
hopes for their loved ones‟ future, can help ill family members communicate what they might not 
be able to verbalise to their loved ones (Andershed, 2004). 
 
 
 
49 
 
 
2.10 Financial assistance in palliative care 
No effective work can be carried out if the terminally ill and their families are worrying 
about loss of income, identifying financial needs is essential, particularly with families who have 
to deal with poverty, unemployment and poor housing (Oliviere, 1990). The role of palliative 
care professional in this area is mainly to assist patient and family on the available health 
insurance through which the patient can benefit care (e.g NHIS and Premier Medicaid). The 
social worker has a role to play in this capacity by sourcing for funds through poverty alleviation 
programmes and possibly grants. Some philanthropist organization could even be consulted for 
help. This, inadvertently, would give some hope to the patient and family. If financial assistance 
is available, patient feels less of a burden to others. Terminal illness can result in a number of 
financial consequences, some of which are related to the inability to perform social roles (e.g 
unemployment or having to pay for someone else to look after the children/dependent relative). 
Other bills might become higher as a result of prolonged stay at home, some patients and family 
care giver may come to find out that their accommodation is not suitable for their altered 
physical needs, necessitating moving house or adaptation to living environment or moving from 
upstairs to downstairs. The terminally-ill and their family may need to be involved in planning 
for the future such as taking steps to make a will and making decisions about who looks after the 
dependent children. 
 Those who have a short life expectancy face loss at every level, physical health 
independence, career, normal family life predictability and future illness. Loss with its 
antecedent financial involvement represent more than simply a crisis for patients and families, 
they also present a remarkable opportunity for self awareness, change and growth (Smith 1990). 
Practical help can be arranged by the health team attached to the health facility to enable 
access to financial benefits or legal advice, Liason with local and national statutory agencies, 
organising package of care at home or negotiating placement and securing funding for residential 
nursing home care. This social care involves identification and mobilization of resource that will 
help the patient, family and carers cope with the situation irrespective of whether these are 
resource within the family or from other voluntary agencies. Fraser (2002) identified the blurring 
of roles as one feature of multi professional team work. This is more prevalent in psychosocial 
domain of palliative care. As a result, the team needs to be aware that the risk of overwhelming 
the patient with psychosocial care may cause difficulties for professionals with the team and if 
care is not taken, some members may feel undervalued. For financial support to be beneficial, the 
50 
 
 
support desired by the provider has to match the support given to him.  This is known as 
matching hypothesis. Psychological stress may increase if a different type of support is provided 
than what the recipient wishes to receive. 
 
2.11 Physical care and palliative care 
 The diagnosis of terminal illness, and the severity of patient‟s condition brings inability 
for the person to perform normal daily activities of personal hygiene, grooming and other basic 
self care (Mitchell, 2000). Those with inadequate support are believed to be at much higher risk 
of death from variety of life-limiting diseases like cancer, cardiovascular diseases and kidney 
problems. Various studies have shown that increased physical and social support have increased 
likelihood for longer survival. 
 Ogunboye (2010) claimed that the important part of promoting physical care is proper 
grooming. Good grooming consists of practices that keep the body healthy; this helps in 
psychological satisfaction for the ill patient. Activities of daily living in self care includes taking 
care of the skin which has to be washed daily, if the patient is weak to do this on his own, the 
carer can help to do this, using soap, towel and water. The soap would break down oil on the skin 
and remove dirts that may clog pores on the skin, the skin should be wiped dry with clean towel 
after bathing, after which talcum powder can be rubbed on pressure points to improve blood 
circulation to those areas and, thus, prevent breakage of the skin. If the patient is very weak to 
ambulate, the team involved should turn the patient frequently to relieve pressure on the bony 
surfaces of the body. 
 Furthermore, the hair needs attention too. If need be, arrangement can be made for a hair 
cut with approval from the patient and significant family members involved in his care. If 
female, the hair can be done neatly and kept tidy, all these activities are part of good grooming. 
Any dirty clothes should be changed and beddings kept dry to prevent air borne infections and, 
thus, create psychosocial stability for the patient. Combs and brushes should be appropriately 
used as required. Cleaning of the mouth is very essential to prevent bad breath and odour coming 
out from the ill patients mouth, antiseptic mouth wash can be used intermittently for the very ill 
patient to prevent multiplication of bacteria in the mouth. Finger nails should be kept short and it 
is better if the family member can assist in some of these simple tasks to give them a feeling of 
involvement but this should not be enforced. The nature of palliative care is to ensure both 
psychological and social aspect of care for the terminally-ill in which assistance in every area 
51 
 
 
should be rendered for the terminally-ill, hence good grooming and overall physical care helps in 
health promotion, improves quality of life and ensures dignity. Even when the inevitable 
happens, the good memory of how their loved ones have been taken care of will help the family 
cope better in their bereavement (Tanchel, 2003). 
In Jeffrey‟s (2003) view, psychosocial care includes the practical aspects of care such as 
financial, housing and activities of daily living and overlaps with spiritual care. Spiritual care 
includes emotional benefits of informal support from relatives, friends, religious groups and 
pastoral care. Psychosocial care, thus, encompasses psychological approaches, which are 
concerned with enabling patient and those close to them express thoughts, feelings and concern 
relating to illness; it also embraces psychological interventions to improve the mental and 
emotional wellbeing of the patient‟s families and carers. 
 
2.12 Lifestyle modification and palliative care 
 This involves a shift from “what used to be” to “what is now.” It demands adjustment in 
how individuals see themselves and each other. Patients maintained their usual patterns for as 
long as possible, and then begin to implement feasible alternatives once they realized that their 
capacities were seriously changing. Patients who were unable to redefine themselves in this way 
attempted to maintain their regular patterns despite the obvious changes in their capacity to do 
so. They ended up frustrated, angry, and feeling worthless. These reactions distanced them from 
others, resulting in the patients feeling alone and, sometimes, abandoned (Mehta & Ezer, 2003). 
For the most part, spouses took the patient‟s physical changes in stride, they attributed the 
changes to the disease, not to the patient personally, and as a result, they were able to empathise 
with the patient. Patients‟ redefining focused on themselves, the changes in their physical status 
and intrapersonal aspects; spouses‟ redefining centered on their relationship with the patient. 
Spouses did their best to “continue on as normal,” primarily for the sake of the patient. In doing 
so, they considered alternatives and reorganized their priorities (Andershed, 2004). 
Sherman (2000) described the “reciprocity of suffering” that family members experience, 
which results from the physical and emotional distress that is rooted in their anguish of dealing 
with the impending death of the loved one, and in their attempt to fill new roles as caregivers. 
The degree to which family members experienced this phenomenon varied according to patients‟ 
redefining. When patients were able to redefine themselves, spouses had an easier time. Such 
patients accepted spouses‟ offers of support; patients and spouses were able to talk about the 
52 
 
 
changes that were occurring, Spouses felt satisfied in the care that they provided. But when 
patients were less able to redefine, then spouses‟ offers of support were rejected or 
unappreciated. In such situations, Jasak (2001) noted that spouses avoided talking about or doing 
anything that reminded the patient of the changes he or she was experiencing but not 
acknowledging. The relationship between the spouse and patient suffered. Rather than feeling 
satisfied with their care, spouses were frustrated and angry, although often they remained silent 
and simply “endured” the situation. The ill person contributed significantly to the caregiver‟s 
ability to cope. Indeed, the ill person was not simply a passive recipient of care but had an impact 
on the experience of the care giving spouse. 
Temo and Cassey (2004) reported that adult children also redefined the ill family 
member; they redefined their ill parent from someone who was strong and competent to someone 
who was increasingly frail. Children felt vulnerable in ways they had not previously experienced. 
Most often, children perceived that the changes in their ill parent were the result of disease and 
not intentional: “It‟s not my father doing this consciously.” Younger adult children were 
particularly sensitive to keeping the situation private, claiming they wanted to protect the dignity 
of the patient, but seemed to want to protect their own sense of propriety. For example, one 
young woman in her early twenties was “devastated” when her father‟s urinary bag dragged 
behind him as he left the living room where she and her friends were visiting. It was difficult for 
some young adults to accept such manifestations of their parents‟ illness. Adolescents in 
particular had a difficult time redefining the situation. They preferred to continue on as if nothing 
was wrong and to shield themselves against any information that would force them to see the 
situation realistically (Davies, 2000).  
Burdening: Feeling as if they are a burden for their family is common among patients. If 
patients see themselves as purposeless, dependent, and immobile, they have a greater sense of 
burdening their loved ones. The more realistically patients redefined themselves as their 
capacities diminished the more accurate they were in their perceptions of burdening. They 
acknowledged other family members‟ efforts, appreciated those efforts, and encouraged family 
members to rest and take time to care for themselves. Patients who were less able to redefine 
themselves did not see that they were burdening other family members in any way. They denied 
or minimized the strain on others (Parke, 2004). The literature provides a comprehensive 
description of the multidimensional nature of the burden experienced by family caregivers, but 
no attention has been given to the burdening felt by patients or adult children specifically. 
53 
 
 
Caregiver burden, usually by spouses, has been described in terms of physical burden, which 
includes fatigue and physical exhaustion, sleeplessness, and deterioration of health (Stajduhar & 
Davies, 1998; Andershed, 2004). Social burden encompasses limited time for self and social 
stress related to isolation. Regardless of the type of burden, however, most caregivers, including 
the ones in the leading away studies, expressed much satisfaction with their caregiving 
(Andershed, 2004). Despite feeling burdened, most caregivers would repeat the experience: 
“Yes, it was difficult and exhausting, and there were days the patient didn‟t think he could 
manage one more minute. But also claims if he had to do it over again, he would not hesitate. He 
had no regrets for what he has  been doing (Brazil & Lohfield, 2009). 
Andershed (2004) further commented that children, too, experienced burdening, but the 
source stemmed from the extra responsibilities involved in helping to care for a dying parent, 
superimposed on their work responsibilities, career development, and their own families. As a 
result, adult children of all ages felt a mixture of satisfaction and exhaustion. Their sense of 
burdening was also influenced by the ill parent‟s redefining if the ill parent acknowledged their 
efforts, they were more likely to feel satisfaction (Goy & Carter, 2007). However, children‟s 
sense of burdening was also influenced by the state of health of the well parent. If that parent 
also was ill or debilitated, the burden on children was compounded. If children were able to 
prioritise their responsibilities they would pay attention to their own needs as well as help their 
parents, they feel less burdened. Children seemed to perceive caregiving as a task they 
themselves would do. Of course, they did not have the life experience of a long-term relationship 
that motivated the spouses to care for their partners, (Davies, 2000). Other palliative care 
professionals can help patients find ways to relieve their sense of burden, and can provide 
patients with opportunities to talk about their fears and concerns and to consider with whom they 
want to share their worries. In this way, patients may alleviate their concern for putting excessive 
demands on family members. The importance of a break for family members, and suggest that 
patients accept assistance from a volunteer or home-support services at those times to relieve 
family members from worry would be quite helpful. When patients affirm family members for 
their efforts, this contributes to family members feeling appreciated and reduces their sense of 
burden (Martin & Barwich, 2008)  
Nurses and all members of the interdisciplinary team can assist family with burdening by 
supporting the reassurances to the patient that he or she is not a burden.  The family‟s efforts 
should be acknowledged when they put their own needs on hold to care for the patient. The 
54 
 
 
family caregiver should appreciate the importance of taking care of themselves as a legitimate 
way of sustaining the energy they need for the terminally-ill. Their positive desires to help must 
not be neglected. Toscani and Micco (2003) explained the importance of acknowledging the 
reorganisation action and the considerable adjustment in daily routine of children. They must be 
encouraged to communicate regularly with their parents by visiting them or phoning them often, 
the extra effort involved should not be underestimated. Struggling with Paradox stems from the 
fact that the patient is both living and dying. For patients, the struggle focuses on wanting to 
believe they will survive and knowing that they will not. On “good days,” patients felt optimistic 
about the outcome; on other days, they succumbed to the inevitability of their approaching 
demise. Often, patients did not want to “give up” but at the same time were “tired of fighting.” 
They wanted to “continue on” for the sake of their families but also wanted “it to end soon” so 
their families could “get on with their lives.” Patients coped by hoping for miracles, fighting for 
the sake of their families, and focusing on the good days (Field, 1997; Davies 2000). Children 
struggled with hanging on and letting go to a greater extent than their parents. They wanted to 
spend time with their ill parent and also to “get on with their own lives.” Feeling the pressure of 
dual loyalties (to their parents and to their own young families), the demands of both 
compounded the struggle that children faced (Field & Cassel 1997).  
 
2.13 Re-allocation of roles and palliative care 
Those facing terminal illness in a family member experience changes in every realm of 
daily life-relationships, roles, socialization, and work patterns. The focus of the changes differed 
among family members. Patients faced changes in their relationships with everyone they knew. 
They realised that the greatest change of their life was underway, and that life as they knew it 
would soon be gone. They tended to break down tasks into manageable pieces, and increasingly, 
they focused inward. The greatest change that spouses faced was in their relationship with the 
patient (Davies, 2000). They coped by attempting to keep everything as normal as possible. 
Children contended with changes that were more all-encompassing. They could not withdraw as 
their ill parent did, nor could they prioritise their lives to the degree that their well parent could. 
They easily become exhausted. Mehta (2003) analysed the focus thus: Searching for meaning 
which has to do with seeking answers to help in understanding the situation. Patients tended to 
journey inward, reflect on spiritual aspects, deepen their most important connections, and 
become closer to nature: “The spiritual thing has always been at the back of one‟s mind, but it‟s 
55 
 
 
developing more. When one  is sick his/her attitude changes towards life. You come not to be 
afraid of death. Perreault and Fothergill (2004) claims that spouses concentrated on their 
relationship with the patient. Some searched for meaning through personal growth, whereas 
others searched for meaning by simply tolerating the situation. Some focused on spiritual 
growth, and others adhered rigidly to their religion with little, if any, sense of inner growth or 
insight. Once pain was controlled, they felt peaceful and relaxed and interpreted this as an 
indication that the couple would return to their old routines. The patient‟s meaning of the 
experience, however, often focused on future consequences of the pain. The meaning attributed 
to the patient‟s experience also influenced spousal bereavement. (Martin, Barwich & Fyles, 
2008). For example, spouses who witnessed the patient die a painful death, and who believed 
that physician‟s  negligence was the cause of the pain, experienced elevated anger and much 
distress after the death (Carr ,2003).  
Traditionally, palliative care practice and discussions have focused on families of cancer 
patients. At the same time, care of the patient with cardiac disease, for example, has traditionally 
focused on restoring health and enabling a return to normal life. So, the idea of providing a 
patient with aggressive versus palliative treatment has, until recently, not been a well- discussed 
issue in the treatment of the patient with heart disease. For most patients with heart disease, and 
particularly for those with heart failure, the decline in functional status is slower than for patients 
diagnosed with cancer. Barnes (2006) reported that if palliative care is considered only after 
disease-related care fails or becomes too burdensome, the opportunity for patients to achieve 
symptom relief, and for patients and family members to engage in the process of fading away, 
may be lost. Consequently, following a model of care wherein issues of treatment and end-of-life 
care are discussed early and throughout the illness trajectory facilitates patient and family 
coping, and enables nurses to optimally support families. 
 
2.14 Centre for palliative care Nigeria 
 Palliative care was formally introduced to the Nigerian government policy maker and 
general public in 2003 through the palliative care initiative Nigeria (PCIN) known as Centre for 
Palliative Care Nigeria (CPCN), based at the College of Medicine, University of Ibadan. PCIN is 
a multidisciplinary group of medical specialists who implement the major objective of training, 
service and research in these areas. Their aim is to sensitise the public on the importance of 
palliative care. The centre operates a pain and palliative care clinic at the University College 
56 
 
 
Hospital, Ibadan. This was commissioned in 2005 to provide support for patient with chronic 
pain and those with pain, from terminal disease condition (Soyannwo, 2005). In its current form, 
as a chapter of the International Association for the study of pain, the group is working towards 
including palliative care into the curriculum of medical and nursing students, based upon the 
guidelines developed by Hospice Africa, Uganda. Funding has been obtained to develop home 
based palliative care service. A training the trainers programme is expected to produce locally 
trained palliative care practitioners. 
 Soyannmo (2004) envisaged palliative care as a helpful approach in the management of 
HIV/AIDS epidemic in Nigeria; she added that the template upon which palliative care and pain 
management was successfully implemented among women with terminal disease for breast and 
cervical cancers could also be used to manage the pain associated with HIV/AIDS and other life 
limiting diseases. 
Centre for palliative care Nigeria (CPCN) is a not-for-profit organization which was set 
up to champion the cause of palliative care in Nigeria. Palliative care involves treatment of pain 
and distressing symptom associated with life limiting illness and providing support 
(psychological, social and spiritual) for patient. Such all encompassing (holistic) type of care is 
hitherto not available in Nigeria despite millions of patients and families that can benefit from 
such care.  
 Since 1996, members of CPCN have been at the forefront in a bid to making strong pain 
medication (opioids, including oral morphine) available in Nigeria, and also to developing pain 
management and palliative care education and services in the country. Through special training 
courses and workshops, over 200 health professionals (doctors, nurses, social workers, 
pharmacists, and physiotherapists) have been trained by the organisation. Its collaboration with 
the University College Hospital, Ibadan has led to the establishment of the first palliative care 
service in Nigeria which include providing care for in-patients, running a special outpatient 
clinic, day care hospice and home-based care for those patients and families with challenging 
end of life issues, especially unrelieved pain. In spite of these achievements, the organisation 
needs to forge ahead and maintain its leadership and pioneering role. The aim of CPCN is to 
promote the best possible quality of life for people (and their family members) living with life-
limiting diseases/terminal illnesses in Nigeria, including cancer, HIV/AIDS, neurological 
disorders, end stage kidney diseases, and complicated heart diseases. 
57 
 
 
 The home-based palliative care programme of the organisation was commenced with a 
„start-off‟ grant from Hospice Africa UK. This program will require further funding to be well 
established and increase coverage. Other proposed projects of CPCN, for which funding is being 
sought, include: subsidy for drugs, dressings and transportation, food and hospital bills. The 
organisational development of CPCN include: 
Conducting training for doctors, nurses, social workers and pharmacist from various health 
facilities in Nigeria to develop a core group of palliative care specialists for the nation, training 
of allied health workers, care givers and volunteers on the concept of holistic care, training of 
team members and also assisting and monitoring other organisation in Nigeria to establish 
palliative care training and service. The University of Nigeria Teaching Hospital, Enugu and 
Federal Medical Centre, Abeokuta also have Palliative Care Units. 
 
2.15 Empirical studies  
Some relevant empirical studies referred to as the record of direct observations and 
experiences of previous work on palliative care are hereby highlighted. 
The volume of research in palliative care has grown dramatically in the last decade. 
George (2002) found one thousand articles on end-of-life issues of which four hundred were 
empirical studies. However, there remains important areas that are yet to be adequately 
addressed (Penrod, Morrison 2004). Under researched arrears include barriers to assessing 
palliative care, supportive services, psychosocial and spiritual issues. World Health Organization 
(2004) highlighted the importance of palliative care of older people and those from different 
cultures. 
st
Onyeka‟s (2013) work on 21  century palliative care: A tale of four nations provides a 
focused review on the progress of palliative care practice in four developing nations (i.e Nigeria, 
Georgia, Ethiopia and Tanzania) Onyeka and colleagues highlighted the specific challenges 
unique to each nation and proposed steps needed for the growth of palliative care services in 
these four nations. This work served as a stimulus for increasing global awareness of palliative 
care in the developing world and for promoting the establishment of palliative care in developing 
countries where such services are still lacking. 
Clinical components of palliative care in Nigerian hospitals by Soyannwo and Kuye 
(2007) revealed that palliative care is broader than end of life care or terminal care. It 
complements therapies that aim to cure or control underlying disease. The major problems that 
58 
 
 
constitute these components include pain, weakness, fatigue, intestinal and urinary problems 
with skin problems. The outcome, thus, revealed that palliative care should aim at achieving best 
quality of life for both patients and family, relationship network should be made to feel informed 
and supported even if the inevitable happens and lastly the health care group that accepts the 
goals of care, ask the expertise and compassion to deliver quality care for the palliative patients. 
Furthermore, Elumelu, Adenipekun, Soyannwo, Aikomo, Amanor-Boadu and  Ogundelu 
researched on palliative care experience in breast and uterine cervical cancer patients in Ibadan, 
Nigeria. The study was carried out by reviewing the case notes of all patients with advanced 
cervical and breast cancer that received palliative care in the newly established hospice and 
palliative care unit of UCH within a period of thirty months (2008-2010). Palliative measures 
applied include medications, assessment of response to care, assessment of level of satisfaction 
to care provided. Out of 178 patients, reviewed 80 had cervical cancers, while 98 had breast 
cancers. 
About ninety three percent of these patients presented with pain, most commonly used 
drug was oral morphine. Approximately fifty eight of these patients were not resident in Ibadan, 
financial constraint was the most reported psychosocial issue 24.1percent, 36.5 percent have 
gone back to where they were referred from. 57.3percent were reported dead while 6.2percent 
were still receiving care from the palliative care team. The study concluded that pain was a major 
symptom at presentation for majority of the patients used for the study. The percentage of the 
patients resident outside Ibadan was high in comparison with those resident in Ibadan. Indicating 
additional travel cost  to receive treatment.    
Literature has identified that palliative care of the terminally-ill and those with life 
limiting illness, though on expanding field, funding is limited and has been largely contingent on 
the pharmaceutical industry in pursuit of approval for analgesics and other agents to address 
symptoms  concerned (Ferrel, 2004). Worryingly, there is lack of funding by foundations and 
government agencies. Only a small share of cancer research funding is devoted to palliative care 
in the United States, though each death potentially affects the well-being of an average of five 
other people (Standing Committee on Social Affairs, 2000). 
 Research on exploring the transition from curative care to palliative care conducted by 
Gardinar, Ingletion, Gott and Ryan (2011) revealed that little is known about the potentially 
complex transition to palliative care, evidence thus suggested that continuity of care and 
multidisciplinary collaboration are crucial in order to improve the experience of patients making 
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the transition. An important role is outlined for generalist providers of palliative care. 
Incorporating palliative care earlier in the disease trajectory and implementing a phased 
transition appear key components of optimum care. 
Another study on the role of dignity in end of life care as reported by Chochinov (2012) 
who examined how patients nearing death understand the notion of dignity and what factors 
undermine or maintain dignity at the end of life. 
The result of this study was an empirical model of dignity which has informed various 
aspects of research programme. The model of dignity in the terminally ill forms the basis of a 
novel intervention called dignity therapy. This individualised, brief psychotherapy has been 
designed specifically to maintain the dignity of dying patients and their families. This study also 
informs the understanding of how notions of personhood are important to acknowledge in pursuit 
of dignity conserving care. 
Morgan, Massaro and McMillan (2000) examined the assessment of quality of life at the 
end of life in palliative care, it was emphasised that selection of the appropriate quality of life 
instrument depends on the purpose of the assessment and characteristics of the patients, they 
reported that the instrument must measure all aspects of quality of  life that may be affected by a 
life limiting illness. It was concluded that there was little evidence to suggest the impact of 
specialist palliative care on patients‟ quality of life. 
Godwin (2003) measured the effectiveness of palliative day care in improving pain, 
symptom control and quality of life, he made use of prospective comprehensive study, Mcgill 
quality of life (MQOL) and Palliative care Outcome Scale (POS), Result was that the day care 
group has better pain control at the first assessment and symptom control at the second interview 
than the comparison group within the day care group. The palliative care outcome scale item 
„symptom control was significantly worse by the final interview. Both groups maintained overall 
quality of life during the three months of the study. 
The hospital quality of life index (HQLI) administered within 48 hours of admission and 
three weeks after hospice care evaluated the outcomes of hospice services and explore factors 
that affect quality of life. The result found that quality of life of hospice patients was reasonably 
good and stable over the course of three weeks of care. The individuals were most satisfied with 
social/spiritual aspects of quality of life and were least satisfied with physical functional aspects 
of quality of life. Highest scores related to the support patients perceived from family and 
friends, the physician and the hospice team (Mcmillan & Mahon, 1994). 
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Despite most literature emphasising various available palliative care programs, Jarvis, 
Burge and Scot (1996) on evaluating palliative care outcome surveyed physicians nurses family 
members and patients‟ assessment. Result revealed symptom relief satisfaction with care for 
patients/families, good nursing morale and reduced stress for other staff members. The two 
components of programme rated most highly were the availability of care and the psychosocial 
support given to families and patient‟s satisfaction with information regarding side effects of 
treatment was also reported. Availability of care givers and adequate information about tests 
performed was greatest in the palliative care unit as compared to home care. 
Lee (2006) in her study examined controlling involvement to promote confidence in 
palliative care decision-making (made use of grounded theory), she explored the perspective of 
patients with advanced illness, their experiences and making care decisions. The findings 
indicate that partnerships between conditions for decision-making in palliative care provide the 
most favourable conditions for decision-making in palliative care where patients can comfortably 
communicate their decision needs. However, her findings contradict models of patient 
participation which favour patients being independent decision makers, though the content and 
process of communication with patients and the importance of identifying the needs of family 
members as separate to the needs of patients in care decision-making. 
Herth (2000 & 2001) tested a Hope Intervention Programme (HIP) which she evaluated 
in the sample of people with recurrent conditions of life limiting illness (cancer). Based on her 
empirically derived theory of hope, the intervention consisted of eight sessions delivered in a 
nurse facilitated group setting; six sessions focused on strategies that specifically address the 
four hope processes: experiential, relational, spiritual and rational thought. During the final 
session, participants developed an individual plan with strategies to maintain and foster hope, 
when Herth tested this intervention, she found significantly increased hope levels in the 
treatment group compared with two control groups. This significant difference persisted at three, 
six and nine month follow-up measurement. 
Cantrell and Conte (2008) adapted the hope intervention programme for internet use and 
conducted a pilot test with six female survivors of childhood cancer. This innovative delivery 
method showed promise as a strategy to bridge geographic distances and may appeal to 
individuals who are more comfortable communicating online. 
Hinds, Quargnenti and Fairclough (1999) developed a psychosocial Research Translation 
Team to integrate evidence - based hope intervention guidelines into a terminal care department 
61 
 
 
at St. Jude Hospital, in United Kingdom. Using this innovative approach, the multidisciplinary 
team reviewed the literature in hope and interviewed experts on the topic. The team used this 
information to develop its own definition of hope and to identify potential projects aimed at 
translating the evidence - based guidelines on hope into practice, the projects included adding 
information about hope to patient‟s handbook, developing patient/family and staff educational 
sheets about hope, developing a telephone hotline that allows for effective delivery of messages 
and designing and launching websites about hope. This program demonstrated the creative and 
diverse approaches that palliative health care providers can use to support and promote hope 
among patients and families facing life threatening illnesses. 
One of the goals of palliative care is to provide psychosocial support to patient and 
families facing terminal illness. Psychosocial care has been defined as concerned with the 
psychological and emotional well-being of the patient and their family/carers including issues of 
self esteem, insight into an adaption to illness and its consequences, communication social 
functioning and relationship (Macleod, 2008). The earliest systematic reviews of interventions 
for family carers of palliative care patients were conducted by Harding and Higginson (2003). 
Key data basis were searched for reported intervention. Their review identified twenty-two cases 
related to interventions, five interventions were evaluated via randomised controlled trials. A 
range of intervention approaches was identified including home care, respite care, social 
networks and activities, problem solving and education, one on one therapy and group work. 
They concluded that there was only a small body of evidence regarding the effectiveness of 
interventions for carers of cancer and palliative care patients; the bulk of the evidence came from 
a small number of studies that were graded as moderate to weak in terms of rigour.  Furthermore, 
evaluating the status of supportive interventions for carers was acknowledged as one of the 
priorities for the international palliative care family care research. 
 Two other studies conducted by Duggleby (2007) via qualitative data method reported 
that carers perceived psychosocial support intervention as beneficial. They conducted a pre-
test/post-test study intended to promote hope among carer while the study sample size precluded 
statistical analysis, the qualitative responses indicated that the programme was received 
favourably.  Milberg (2005) found that regular support group sessions for family carers of 
palliative care patients were also perceived as beneficial when follow up evaluations were 
conducted. All participants reported that they would recommend a support group to others in a 
similar situation. 
62 
 
 
 Canadian Cancer Society (2007) investigated on the availability of rural models for the 
delivery of palliative care services. \Several reports were identified which outline rural palliative 
care delivery models. Many of these explicate a model of partnership between urban and rural 
providers, or the development of palliative care networks and linkages between rural hospitals 
and home care services. Others have concluded that the difficulty in accessing specialist 
palliative care services and support within the rural community indicates that such a model of 
specialist palliative care or hospice as a site of care may be more suitable as an urban model 
(Evans, Store & Elewyn, 2003). This conclusion was reached mainly because of the models in 
rural areas. It was then deemed better to think of hospice palliative care as a philosophy of care 
rather than as a site of care. Further evidence must, thus, be focused on furthering understanding 
of how best to meet the palliative care needs of rural dwellers, their caregivers and the 
professionals who serve the rural community. 
 Qualitative study carried out by Conley and Barman (1997) on the informational needs of 
primary care giver of terminal patients who receive home care while in a rural setting. The 
subjects were interviewed over a period of twelve months of the family members‟ death. 
Average percentage of respondents recorded overall satisfaction with information available 
during care provision stress and exhaustion were reported. The identified specific needs were 
information about patient‟s disease progression, symptoms, side effects and treatment options 
with expectation. Available supports through health care and other agencies. Hospice and home 
care specialist need to function effectively to assist caregivers, focus more on addressing 
caregiver stress and coping. Finally, community resources must be continually reassessed and 
work should be geared towards filling the gaps. 
 Passik (2002), in his pilot study of oncology staff perceptions of palliative care in rural 
and community settings, explored perceptions on difficulty in managing symptoms and side 
effects associated with managing cancer symptoms and availability of hospice care and barrier to 
obtaining services. Results show less than optimal delivery of palliative care in rural settings, 
confusion of services hinders continuity as regards availability and integration of palliative care 
into clinics. The major problem seen with pain control and other physical symptoms are a 
mandatory first step in palliative care. Poor integration of multidisciplinary care resulted in 
inadequate management. 
 White and Jaes (2005) examined the impact of being part of the palliative care family on 
the families of terminally- ill, seventeen families were used for the study. Their finding emerged 
63 
 
 
thus: One or more members in a family took prime responsibility for care; some claimed the 
burden was exhausting. Family carers were generally untrained but willing (though they feared 
doing the wrong thing); not knowing what to expect made the experience more difficult; food for 
the ill person was an essential component of caring; physical care becomes an issue as the 
patient‟s condition worsened. The family carer relied on the nurse to provide equipment and 
teach them how to use it as well as giving medications. Finally, the community, the neighbours 
and family support became more evident, especially if that family had been a long term resident 
in the area. 
 Oyebola (2007) looked at the role of palliative care in the era of Antiretroviral therapy 
(ART) and vice-versa, solely on clients with HIV/AIDS, he discovered the need to address the 
ethical issues surrounding the disease epidemic, stressed the need for equal distribution of 
appropriate drugs and that palliative care must be accessible and affordable, as such should be a 
fundamental right of every HIV positive client. 
 Akeredolu (2008), however, reviewed gender issues in palliative care. She, as the founder 
and President, Breast Cancer Association of Nigeria (BRECAN), highlighted the existence of 
gender issue for women with terminal illness. The cultural and community expectation of the 
roles women play as the family carer, concerns that women do not come out to the open early 
enough, thereby fail to receive adequate income and concern about who to take care of children 
as a result of disease progression. The essence of appropriate health education was thereby 
highlighted to assist them out of ignorance.  
 
2.16 Theoretical framework 
 The relevant theoretical framework for this study is; the sociological theories of illness 
and health care, which are structural functionalism theory and symbolic interactionism theory. 
Structural functionalism theory 
- Structural functionalism began with Herbert Spencer (an English Sociologist) known for 
coining the phrase “survival of the fittest” in his book titled “Principles of Sociology” 
th
1986. In 19  century, Emile Durkhelm laid the primary  foundations for structural 
functionalism. 
This structural functionalism has a theoretical understanding of society that conceives 
social systems as collective means to fill social needs. In order for social life to survive 
and develop, there are a number of activities that need to be carried out to ensure that 
64 
 
 
certain needs are fulfilled. In the structural functionalist model, individuals produce 
necessary goods and services in various institutions and roles that correlate with the 
norms of the society (Gingrich, 1999). 
 The use of structural functionalism as a framework for this endeavour is predicated upon 
the premise that palliative care (as a dependent variable) can be categorized as a social 
institution: a collection and integration of care designed to address the needs of the primary 
stakeholder i.e. the terminally-ill patient. In addressing the needs of the terminally-ill patient, this 
study will attempt to determine the efficacy of other „collective means‟/social institutions 
(psychosocial support and family integration) as determinants of a social subsystem (palliative 
care) in terminally-ill patients at the University College Hospital, Ibadan, Nigeria. At a micro 
level, the structural functionalism slant of this study is founded upon the orientation that 
psychosocial support and family integration are critical to the quality, scope and depth of the 
palliative care provided to terminally-ill patients at the University College Hospital (UCH) 
Ibadan, Nigeria  
There are a number of key assumptions in Structural Functionalism theory. One of the 
. 
assumption is that institutions are distinct and should be studied individually Many Structural 
Functionalists look at institutions individually as though they are divorced from other 
institutions. This is a mistake, as institutions are interlinked in society and those employing a 
structural functionalist approach should take into consideration the network of relationships that 
exist between these institutions. (Davis & Moore, 1984). The palliative care of terminally ill 
patients cannot be looked at in isolation given their interconnectedness to psychosocial support 
and family integration. 
Structural Functionalism views society as constantly striving to be at a state 
of equilibrium, which suggests there is an inherent drive within human societies to cohere or 
stick together. This is known as the cohesion issue (Hark & Durk, 2007).  Societies strive 
towards equilibrium, not through dictatorial mandate by the leaders of society but rather because 
the social structure of societies encourages equilibrium. This study will look into the traditional 
and practical cohesiveness of psychosocial supports and family integration endemic in palliative 
care. Palliative caregivers stick together as individuals and parts of a group with a unifying 
objective of catering for the terminally-ill. Psychosocial supports and the family (as an integral 
unit) as social subsystems coalesce in the palliative care of terminally-ill patients. 
65 
 
 
This is in line with how classical functionalist theories are defined: by a tendency towards 
biological analogy and social evolution. As an advocate of the classical functionalist; Giddens, 
(1984) stated: Functionalist thought, from Comte onwards, has looked particularly towards 
biology as the science providing the closest and most compatible model for social science. 
Biology has been taken to provide a guide to conceptualising the structure and the function of 
social systems and to analysing processes of evolution via mechanisms of adaptation 
functionalism strongly emphasises the pre-eminence of the social world over its individual parts 
(i.e. its constituent actors, human subjects). 
Structural Functionalism also has an anthropological basis in the work of theorists such 
as Radcliffe-Brown (2004). It is in  Brown's specific usage that the prefix 'structural' emerged. 
Radcliffe-Brown believed that society constitutes a separate "level" of reality, distinct from both 
biological and inorganic matter. Individuals are, therefore, merely transcient occupants of 
comparatively stable social roles. The predictability of psychosocial support and family 
integration in palliative care of the terminally-ill is an example of stable social roles given the 
need for humanity to live in harmonious adjustment to one another. 
Herbert Spencer, a British philosopher famous for applying the theory of natural selection 
to society was in many ways the first true sociological functionalist (Cuff & Payne, 1998). While 
Durkheim is widely considered the most important functionalist among positivist theorists, it is 
well-known that much of his analysis was culled from reading Spencer's work, especially 
his Principles of Sociology Spencer compares society to the human body. Just as the structural 
parts of the human body - the skeleton, muscles, and various internal organs - function 
independently to help the entire organism survive, social structures work together to preserve 
society (Cuff & Payne, 1998).   
Spencer concluded that society is constantly facing selection pressures (internal and 
external) that force it to adapt its internal structure through differentiation. Every solution, 
however, causes a new set of selection pressures that threaten society's viability. It should be 
noted that Spencer was not a determinist in the sense that he never said that selection pressures 
will be felt in time to change them, they will be felt and reacted to; or the solutions will always 
work. Spencer recognised that the degree of centralised and consolidated authority in a society 
could make or break its ability to adapt. In other words, he saw a general trend towards the 
centralisation of power as leading to stagnation and ultimately pressures to decentralise. More 
specifically, Spencer recognised three functional needs or prerequisites that produce selection 
66 
 
 
pressures: they are regulatory, operative (production) and distributive. He argued that all 
societies need to solve problems of control and coordination, production of goods, services 
and ideas, and, finally, to find ways of distributing these resources. The regulatory environment 
within which palliative care (as a subset of society) function must be such that the well-being of 
the terminally-ill must be of paramount importance at all times. In this context, psychosocial 
support and family integration provide the yardstick within which the quality, depth and scope of 
palliative care are measured. 
Durkheim proposed that most stateless, "primitive" societies, lacking strong centralised 
institutions, are based on an association of corporate-descent groups (Nolan & Lenski, 2004). 
Durkheim was concerned with the question of how certain societies maintain internal stability 
and survive over time. He proposed that such societies tend to be segmented, with equivalent 
parts held together by shared values and common symbols. Durkheim used the term "mechanical 
solidarity" to refer to these types of "social bonds based on common sentiments & shared moral 
values, which are strong among members of pre-industrial societies (Parson & Shills, 1999). In 
modern, complicated societies, members perform very different tasks, resulting in a strong 
interdependence. Durkheim argued that complicated societies are held together by 
organic solidarity. The central concern of structural functionalism is a continuation of the 
Durkheimian task of explaining the apparent stability and internal cohesion needed by societies 
to endure over time. Societies are seen as coherent, bounded and fundamentally relational 
constructs that function like organisms, with their various parts (or social institutions) working 
together in an unconscious, quasi-automatic fashion toward achieving an overall social 
equilibrium. All social and cultural phenomena are therefore seen as functional in the sense of 
working together, and are effectively deemed to have "lives" of their own. They are primarily 
analysed in terms of this function. The individual is significant not in and of himself, but rather 
in terms of his status, his position in patterns of social relations, and the behaviours associated 
with his status. Therefore, the social structure is a network of statuses connected by associated 
roles. 
Talcott Parsons was influenced by  Durkheim . For Parsons, "the social system is made 
up of the actions of individuals (de Maio, 2010). His starting point is the interaction between two 
individuals faced with a variety of choices about how they might act (Tumin, 2001). 
These choices are influenced and constrained by a number of physical and social factors (Kuper, 
1988) 
67 
 
 
Parsons determined that each individual has expectations of the other's action and 
reaction to his own behaviour, and that these expectations would (if successful) be "derived" 
from the accepted norms and values of the society they inhabit (Tumin, 2001) According to him, 
in a general context there is no perfect "fit" between behaviours and norms, so such a relation is 
never complete or "perfect." Parsons never claimed that social norms were generally accepted 
and agreed upon. This to him, was simply a historical question. The cohesion and 
interdependency of the subsets that compromise the effectiveness of palliative care cannot be 
taken lightly. Psychosocial support and family integration must individually and collectively 
constitute a seamless piece of the puzzle. The whole is more than the sum of its individual parts. 
Symbolic Interactionism Theory 
The term „„symbolic interactionism‟‟ was invented by Blumer (1999)  to describe 
sociological and social psychological ideas he presented as emanating directly from Mead, 
„„Symbolic interaction theory‟‟ is a term that is related to those ideas, though not necessarily in 
the specific forms presented by Blumer or Mead. 
Its theoretical proposition considers the self to reflect society and organises behaviour 
that addresses the nature of human interaction, and the relationship between society and the 
person. Its imagery begins with a vision of society as a web of communication: Society is 
interaction, the reciprocal influence of persons who, as they relate, take into account each other‟s 
characteristics and actions, and interaction is communication. Interaction is „„symbolic,‟‟ 
meaning it is conducted in terms of the meanings people develop in the course of their 
interdependent conduct. The environment of human action and interaction is symbolically 
defined: It is the environment as it is interpreted that is the context, shaper, and object of action 
and interaction. Persons act with reference to one another in terms of symbols developed through 
interaction and act through the communication of those symbols. Society is a label aggregating 
and summarising such interaction. Society does not „„exist‟‟; it is created and continuously re-
created as persons interact. Social reality is a flow of events joining two or more persons. 
Palliative care is not a one-size-fit-all proposition. In the same vein, the psychosocial support and 
the integration of the family of the terminally-ill patient as a cohesive unit are not a cookie cutter 
proposition. At the nucleus and center of this independent variable is the individual, profile and 
personal characteristics of the terminally-ill patient. More than simply being implicated in the 
social process, society and the person derive from that process: They take on their meanings as 
those meanings emerge in and through social interaction. 
68 
 
 
Neither society nor the individual is ontologically prior to the other in this imagery; 
persons create society through their interaction, a web of communication and interaction that 
creates persons as social beings. Society and the individual presuppose each other. This 
conception of society incorporates a view of the human being as „„minded‟‟ and that 
„„mindedness‟‟ as potentially reflexive. That is, people can and sometimes do take themselves as 
the object of their own reflection, thus creating selves, and doing this from the standpoint of the 
others with whom they interact. Selves are inherently social products, although they involve 
more than reflected appraisals of others in the immediate situation of interaction; selves involve 
persons as subjects responding to themselves as objects. Thinking takes place as an internal 
conversation that uses symbols that develop in the social process. Mind arises in both the 
evolutionary and individual senses in response to problems (interruptions in the flow of 
activities) and involves formulating and selecting from symbolically defined alternative courses 
of action to resolve those problems. Choice is an omnipresent reality in the human condition, and 
the content of choices is contained in the subjective experience of persons as that experience 
develops in and through the social process. 
Following this imagery is a view of human beings, both collectively and individually, as 
active and creative rather than simply responsive to environmental stimuli. Since the 
environment of human action and interaction is symbolic; because the symbols attached to 
persons (including oneself), things, and ideas are the products of interaction and reflexivity and 
can be altered and manipulated in the course of that interaction; since thought can be used to 
anticipate the effectiveness of alternative courses of action in resolving problems; and because 
choice among alternatives is an integral feature of social conduct, one arrives at an image of 
social interaction as literally constructed, although not necessarily anew in each instance and in 
the course of interaction. This could result in an indeterminate human behaviour in the sense that 
the course and outcome of social interaction cannot, as a matter of principle, be completely 
predicted from conditions and factors existing before that interaction. Palliative care services do 
not exist in a vacuum. What makes them possible and valuable are their interaction and 
congeniality relative to the terminally-ill patient. Conversely, psychosocial support and family 
integration are stand alones as individual social subsystems within unique and distinctive 
characteristics. However, what gives them value and distinctiveness is the synergy and flavour 
palliative care provide. 
69 
 
 
The self refers to the conscious, reflective personality of an individual. It is the entity the 
person envisions when he/she thinks about who they are. In order to understand the concept of 
self, it is important to understand that the development of self is only possible through role-
taking. In order to look upon oneself, the individual had to be able to take the role of another, 
which, in turn, allows you to reflect upon your self. Because role-taking is a necessary part of 
self-development, it is concurrent with the development of self. Empathy is a critical ingredient 
in palliative care. Psychosocial supports and family integration are effective in palliative care 
depending on the depth of the empathy demonstrated by the various actors involved. At the most 
rudimentary level, empathy is not about listening to another in order to generate a response but to 
understand. Understanding does not come from the head but the heart. 
According to Mead (1967), the self develops in a series of three stages: 
1. preparatory stage - meaningless imitation by the infant. 
2. play stage - actual playing of roles occurs, but no unified conception of self develops. 
3. game stage - this is the completion stage of self-development; the child finds who he or 
she is; the child also must respond to simultaneous roles; the individual can act with a 
certain amount of consistency in a variety of situations because he/she acts in accordance 
with a generalized set of expectations and definitions he/she has internalized. 
The self consists of two parts, the I and the Me. The I is the impulsive tendency of the 
individual and the spontaneous, unorganized aspect of human existence. The Me is the 
incorporated other within the individual. The incorporated or generalized other supplies an 
organised set of attitudes and definitions, understandings and expectations) that are common to 
the group to which the individual belongs  
According to Mead (2004) presentation of the „I‟ and the „Me‟ action begins in the form 
of the I and ends in the form of the „Me‟ the „I‟ gives propulsion while the Me gives direction. 
Additionally, the I, being creative and spontaneous, provides for change in society. The Me, 
being regulatory, works to maintain society. Thus, the concept of self is a powerful and 
comprehensive understanding of how humans function in society and, in turn, how society 
functions (by both changing and remaining constant). The concept also depicts the relationship 
between the individual and society (Meltzer, 1999). 
According to Meltzer (1999), there are three implications of selfhood: the possession of 
self makes the individual a society in miniature; humans can engage themselves in interaction 
they can view themselves in a new way, the ability to act toward oneself makes possible an inner 
70 
 
 
experience which needs not reach overt expression; humans can have a mental life and an 
individual with a self can direct and control his behaviour. It is also important to recognize that 
the self and the mind are twin emergent in the social process.. The Mind or mental component of 
man emerges out of human communication. The mind is only present when significant symbols 
(as opposed to gestures that do not have meaning but simply evoke responses) are being used in 
communication. In this sense, mind is a process manifested whenever the individual is 
interacting with himself using significant symbols (symbols or gestures with interpretations or 
meanings). The mind is also the component of the individual that interrupts responses to stimuli. 
It is the mind that attempts to pre-vision the future by exploring possible outcomes of actions 
before proceeding with actions. In minded behaviour, the individual carries on an internal 
conversation. 
The basic assumptions of symbolic interactionism, according to Herman and Reynolds 
(1994), are: humans live in a symbolic world of learned meanings, symbols arise in the social 
process and are shared, symbols have motivational significance; meaning and symbols allow 
individuals to carry out distinctively human action and interaction. The mind is a functional, 
volitional, teleological entity serving the interests of the individual; humans, unlike the lower 
animals, are endowed with the capacity for thought; the capacity for thought is shaped by social 
interaction, the self is a social construct; just as individuals are born mindless, so too, are they 
born selfless. Our selves arise in social interaction with others, society is a linguistic or symbolic 
construct arising out of the social process; it consists of individuals interacting and sympathetic 
introspection is a mandatory mode of inquiry. 
71 
 
 
Framework for psychosocial supports and family integration in relation to palliative care 
process and quality of life of terminally ill patients 
 
 
Psychological support 
 
 Diversional support 
 
 Behavioural/cognitiv
 
e support 
 Palliative care process  Quality of life   
  Counselling services   Relief of pain  Feels supported  
  Emotional support  Accept care  
  Educational (availability of  Satisfaction  
 counselling  analgesics)  Positive self concept  
   Hopeful 
S ocial support  Prevention of 
  Accepts prognosis   Companionship suffering (family 
 Spirituality   End of life   
  Rehabilitative involvement in care) 
 support  Multidisciplinary 
  Regular visitation 
  approach to care  
F amily Integration    Home based care  
     Financial assistance 
  Life  style     H ospice care   
modification   
 Re-allocation of roles     
  
 
 
Adapted from Macmillan & Mahon (2004) 
 
In this framework, structural functionalism is a function of different part of the system 
working cohesively together to produce a state of equilibrium. The above framework explains 
the three different independent variables with the component of each as they significantly lead to 
palliative care process in order to ensure good quality of life. Given the fact that society needs to 
solve problems and coordinate the regulatory environment within which palliative care process 
functions, this must be such that the well-being of the terminally-ill is regarded as most 
important.  
Symbolic interaction theory is a powerful and comprehensive understanding of how an 
individual functions in society, thus „self‟ takes a pivotal role in that all domains of 
psychological and social support with family integration are relative variables in palliative care 
process. This is an example of stable social roles given the need for humanity to live in 
harmonious adjustment to one another. This would help to improve the quality of life of the 
72 
 
 
individual i.e. “self”, which represents the society that takes on their meaning through social 
interaction with one another. (social support).   
 
2.17 Appraisal of Literature 
The literature has reviewed the following  
2.17.1 Research Issue: The burden of terminal illness is increasing worldwide due to the rise in 
the prevalence of cancer, heart disease, neurological problems and HIV/AIDS with increasing 
proportion of the elderly among us. In addition, there is increasing urbanization, 
industrialization, and westernization of dietary and other socio behavioural attitudes in most 
developing countries. In Africa alone, it is estimated that about 2.5 million people die annually 
from HIV/AIDS, while more than 0.5 million die from cancer and other debilitating diseases. As 
a result of this, one is overwhelmed by the large number of patients needing palliative care. 
This critique aims to appraise the need for focused research, in order to develop clinical and 
policy decisions that will guide general medical and palliative care professionals in their care of 
dying patient. Weighted against this need are tenets that value the practical and ethical 
challenges of palliative care research as unique and insurmountable. These two perspectives are 
argued from a null hypothesis that evidence-based research needs not violate the physician‟s 
duty of care to his or her patients and may take place with the express intent of achieving 
symptomatic relief for both the present subject and future patients. The subjective nature of 
effective palliation is at the crux of the discussion; the text stresses recurrent themes in patient‟s 
view on palliative care. For instance, many dying patients value autonomy, spiritual guidance, 
psychosocial support, and symptom relief, as well as the involvement of, and support for, their 
families.  
2.17.2 Late Presentation and Late Diagnosis: In practice patient present late when disease is 
already complicated and degenerated thus leading to late diagnosis. In many development 
countries, patients often present with incurable condition at diagnosis. This is due to belief that 
the disease is due to spiritual forces and discourage from seeking medical assistance and this 
makes them to resort to complementary and alternative medicine. For this reason, some palliative 
care systems have incorporated traditional healers in their education programme in order to gain 
community acceptance and facilitate palliative care delivery. 
2.17.3 Underdeveloped pain management: Although there are no national prevalence statistics 
about pain in Nigeria, we find that many terminally-ill patients have pain, and this constitutes a 
73 
 
 
major health problem. Effective pain management and control is a very vital facet of palliative 
care as unrelieved pain affects both quality of life and the will to live among these patients. 
Poorly managed pain will lead to poor quality of palliative care provided. There are difficulties 
encountered in diagnosis of pain in our environment. In many developing countries like Nigeria, 
the prevalence of pain at the time of diagnosis is between 50% and 75%. Uganda is only the third 
African country to have made morphine available and affordable to its patient population. The 
several challenges facing effective pain relief in practice are similar to those of other developing 
nations and include drug availability, lack of referrals, fears of misuses of potent narcotics/under-
prescribing, lack of public awareness (healthcare workers, policymakers/administrators, the 
public), cultural and religious beliefs. Shortage of financial resources, limitations of healthcare 
delivery systems and personnel, absence of national policies on pain relief and palliative care and 
legal restrictions on the use and availability of opioid analgesics. 
2.17.4 Applied theories: Structural functionalism by Herbert Spencer and Emile Durkhelm in 
th
19  century, delves on the understanding of society that views social system as collective means 
to fill social needs.  There are a number of activities that need to be carried out to ensure that 
certain needs are fulfilled.  This theory sees institutions as being interlinked in society and 
thereby take into consideration the network of relationship that exists between these institutions.  
Society is also viewed as constantly striving to be at a state of equilibrium.  The palliative care of 
terminally ill patients cannot be looked at in isolation, given their interconnectedness to psycho-
social support and family integration. 
 Society is compared to the human body, just as the structural parts of the human body 
function independently to help the entire organism survive, social structures work together to 
preserve society.  Thus, the regulatory environment within which palliative function must be 
such that the well-being of the terminally-ill must be of paramount importance at all times; hence 
psycho-social support and family integration provide the yardstick within which the variables of 
palliative care process are measured.  
 Symbolic interactionism which was invented by Blumer (1999) considers the self to 
reflect society and organise behaviour that addresses the nature of human interaction, and the 
relationship between society and the person.  The society itself is interaction, it does not exist, 
but rather created and goes through dynamics as persons interact.  Since thought can be used to 
anticipate the effectiveness of alternative courses of action in resolving problems, social 
interaction is thus literally constructed.  Palliative care do not exist in a vacuum, what makes this 
74 
 
 
possible and valuable is the interaction and suitability to the terminally-ill. On the other hand, 
psycho-social support and family integration are stand alones as individual social subsystems 
with unique and distinctive characteristics, what however, gives them value and distinctiveness is 
the synergy and flavour palliative care provide. 
 
75 
 
 
CHAPTER THREE 
METHODOLOGY 
3.1 Research design 
 The research design adopted for this study was the descriptive survey research design of 
the ex-post facto type. This is chosen because it provides the researcher the opportunity to collect 
data without manipulation of the independent variables which had already occurred.   
 
3.2 Population of the study 
 The population of the study was 587 and were in three categories and comprised 202 
terminally-ill patients from wards and clinics as well as 202 family caregivers representing one 
family caregiver for one patient while the third category were the health workers made up of 
doctors, nurses social workers and physiotherapists selected also from the same wards and 
clinics totalling 183 health workers. Total respondents for the study were 587. 
  
3.3 Sample and sampling technique 
 The study adopted proportionate, stratified and purposive sampling procedures to ensure 
actual representation of respondents from the three categories. i.e Health workers, patients and 
family caregivers. The health workers were stratified into four strata based on their professions 
(doctors, nurses, physiotherapists and social worker). Sixty percent of the total population of 
health workers‟ category were chosen from each stratum because they constituted a good 
representation in the health workers category. 
 From the chosen eight wards and three out-patients clinics, 202 terminally-ill patients 
were chosen excluding the unconscious patients in each of the chosen wards. The same applies 
to their family care-givers selected at the ratio of one family caregiver to one patient (202 
respondents each from the two categories).  
76 
 
 
Wards and Clinics used for the study 
Wards / Clinics Ward / Health Workers Family Patients  
Clinics Code Care- 
Doc Nurse Physio SW Total  
Givers 
Radiotherapy Ward RTH 6 10 2 2 20 23 23 
Radiotherapy Clinic  RTH Clinic 4 6 2 3 15 31 31 
Surgical Out Patient SOP  6 9 3 2 20 31 31 
Medical Out Patient MOP 6 8 2 3 17 30 30 
West West One  WW1 4 7 2 3 13 20 20 
South West Four  SW4 4 6 2 3 15 10 10 
South East Two SE2 5 7 3 2 16 13 13 
West Three W3 3 5 2 2 12 12 12 
West West Two WW2 4 6 2 2 10 12 12 
East Two E2 4 5 2 2 12 10 10 
East One  E1 3 7 2 2 12 10 10 
Total   183 202 202 
 
3.4 Instrumentation  
 The data for this study was collected using three separate instruments for patients, health 
workers and family care givers. The instruments were psychosocial support scale for the 
terminally ill, family integration scale for the family care givers and palliative care services scale 
for the health workers. These were complemented with In-depth. Interview (IDI), using 
subthemes of psychological support, social support and family integration for all the three 
categories of respondents.  
 
Psychosocial Support Scale  
Section A focused on the socio-demographic background of the patients, family care 
givers and health workers. This includes age, marital status, sex, occupation, religion, and 
duration of illness 
Section B was a 20 item scale on psychosocial support of the terminally ill. It was 
adapted from multi-dimensional scale of perceived social and psychological support by Zimet, 
Dahlem and Farley (1998), drawn on a modified 4-point scale of strongly agree, agree, disagree 
77 
 
 
and strongly disagree, each carrying the weight of 4, 3, 2 and 1, respectively.  Some of the items 
were restructured to suit the purpose of the study.  
In perceived psycho-social support validity study, construct validity, content validity and 
criterion related validity were ensured.  The same group of patients both in-patients and out-
patients were repeatedly used and their data were consistent to ensure reliability. In this 
connection an internal consistency reliability of 0.67 was obtained. 
 
Family Integration Scale  
This was an 18 item instrument that utilises family integration in palliative care (FIPCQ). 
It seeks information on the burden of care on the family care givers. It was adopted from Family 
Strain questionnaire by Robinson and Thumer (2000). The items were drawn on a 4 point scale 
of Strongly Agree, Agree, Disagree and Strongly Disagree, each carrying the weight of 4,3,2 and 
1 respectively.  
Three instruments have been previously used in validating the family disruption from 
illness. The concurrent validity of the previously used instrument was generally good.  Thus, it 
emphasises its ability to measure the family involvement in palliative care. 
The correlation co-efficient of the previous studies were reliable. However, family 
disruption from illness correlated significantly in the expected direction, thus ensuring its 
reliability. Hence 0.65 was obtained for reliability co-efficient.  
 
Palliative Care Services Scale 
 This comprises of 15 item instrument on health care as perceived by the health workers in 
palliative care (HWPPCQ). It was adapted from palliative care evaluation tool kit by Weissman 
(1999). The items were drawn on a four point scale of: Strongly agree, Agree, Disagree and 
Strongly disagree. Each carried the weight of: 4, 3, 2, and 1, respectively.  
 The palliative care tool kit relied solely on existing literature which was also selected 
from the existing tools and the professionals in the palliative care were frequently used to review 
the item through pre and pilot testing procedures to ensure validity. The test- retest reliability 
showed the desired standard, thus confirming its reliability, and 0.71 was obtained 
 
 
 
78 
 
 
3.5 In-depth-Interview 
 The qualitative method of in-depth interview (IDI) was used to complement the 
questionnaires in order to ensure a more comprehensive information from respondents that could 
not be revealed by the survey technique. The in-depth interview affords opportunity for mutual 
interaction of the researcher with  respondents. A total of 10 IDI sessions were conducted with 
the representatives from the three categories of the respondents used for the study. This was done 
making use of discussion guide and tape recorder to store up the responses asides the note taking. 
The in-depth-interview guide is in appendix 1. 
 
Table 3.1: List of IDI Sessions Conducted for the Study 
Ward/Clinic Designation of No of sessions  Date conducted  No of 
Respondents Respondents 
Radiotherapy ward  Physiotherapist 1 8/10/2013 1 
Radiotherapy Clinic  Patient  1 8/10/2013 1 
Family 1 8/10/2013 1 
Caregiver 
Surgical Out patient Patient  1 15/11/2013 1 
(SOP) Family 1 15/11/2013 1 
Caregiver  
South West Two Doctor  1 27/9/2013 1 
East One Nurse  1 19/12/2013 1 
East Two Social Worker 1 19/9/2013 1 
Medical Outpatient Doctor 1 5/11/2013 1 
West West One Nurse 1 14/12/2013 1 
  10  10 
 
 Sub Themes of IDI
1. Perception of the three categories of respondents on palliative care 
2. Psychological support and palliative care 
3. Social Support and palliative care  
4. Family integration and palliative care 
 
3.6 Translation of Protocol to Local Languages  
 The questionnaires were translated into Yoruba language for the patients and family care 
givers that do not understand English language to enable them participate in the study. 
 
 
79 
 
 
3.7 Administration of Instrument        
 An introductory letter was obtained from the researcher‟s Head of Department and Co-
Supervisor.  Prior to securing the introductory letter, a copy of the proposal was presented to the 
UI/UCH Ethical Committee for approval, which was given after necessary corrections were 
effected on the research protocol. The questionnaires were then distributed by the researcher and  
four research assistants from the study area who would have been familiarized with the 
appropriate instructions. The instruments were complimented with In-depth Interview (IDI) for 
the three categories of respondents. The participants for the IDI were selected from the three 
categories of respondents, each professional in health worker category was represented. Same 
number of patients and family caregiver were interviewed. 
 
3.8 Method of Data Analysis  
The data collected were analysed using descriptive statistics of simple percentages and 
bar charts for the demographic data while multiple regressions and Pearson‟s product moment 
correlation was used for research Objectives and hypotheses. Content analysis was used for the 
In-depth-interview. Findings in IDI were documented and used to support literature in the 
discussion of findings. 
 
3.9 Ethical Consideration 
 Due to the nature of this research, the life threatening disease condition s require some 
moral restraint in order not to violate individuals‟ rights. Thus, ethical approval was sought from 
relevant institutional authorities i.e UI/UCH ethical committee which was approved. Informed 
consent was also obtained from the participants in the study. 
 
 
 
 
 
 
 
80 
 
 
CHAPTER FOUR 
RESULTS AND DISCUSSION OF FINDINGS 
 
 This chapter deals with the results and discussion of findings based on the information 
collected from the 587 respondents used for this study. The results obtained were clearly 
presented and exclusively discussed starting with the demographic status of the respondents in 
part “A”. Furthermore, results of the analysis of quantitative data on the three hypotheses and 
two research questions were presented in tabular forms followed by detailed discussion in part 
“B”. These were complemented with report from the qualitative data obtained from in-depth-
interview.  
 
PART A: 
This part of chapter four presents the demographic characteristics of the respondents such 
as the respondents‟ age, marital status, gender, and religion. 
 
4.1 Demographic characteristics of the respondents: 
 
   Fig 4.1: Bar chart showing the distribution of the respondents by age. 
  
Figure 4.1 above shows the distribution of the respondents by age. It shows that the three 
categories of respondents (Health Workers, Family Caregivers and Patients) between the age 
81 
 
 
bracket of 10-20years were 26 or 4.4% while those between the age range of 21 to 30 years were 
86 or 14.6%. Similarly, the respondents between the age range of 31 to 40 years were 195 or 
33.2% while those in the age bracket of 41 to 50 years were 148 or 25.2%. The respondents aged 
50 and above constituted 132 or 22.4% of the respondents used for this study. The respondents 
between the age range of 31years and above constituted the majority population used for this 
study. The majority of the patients used for this study fell between the age range of 31years and 
above. 
 
  
Figures 4.2: Bar chart showing the distribution of the respondents by marital status 
 
Figure 4.2 above shows the bar chart of the distribution of the respondents‟ marital status 
(health workers, family caregivers and patients). This revealed that majority of the participants 
were married 375 (63.8%), 154 (26.2%) were single; 37 (6.3%) were widowed and 6 (1.2%) 
were separated. 
 
82 
 
 
400 369
350
300
250
200 Male
150 137 Health WFoermkearsle  
Family Caregiver 
100
Patients  
50
0
Male Female  
Figure 4.3: Bar chart showing the distribution of the respondents by gender 
  
Figure 4.3 above shows the bar chart of the distribution of the respondents‟ gender (health 
workers, family caregivers and patients). The figure shows that 218 or 37.1%    respondents were 
male while 369 or 62.8% of the total respondents were female. It can also be seen from figure 3 
above that the majority of the respondents used for this study were females that is the health 
workers, family caregivers and even the patients. The female health workers and family care 
givers constituted the majority respondents.  
 
 
 
 
 
83 
 
 
Health Workers  
Family Caregiver 
Patients  
 
Figure 4.4: Bar Chart showing the distributions of the Respondents by Religion. 
 
Figure 4.4 above shows the bar chart of the distribution of the respondents by religion 
(health workers, family caregivers and patients). The figure shows that the adherents of 
Christianity used for this study were 371 or 63.2% while Muslims were 212 or 36.1%. The figure 
further shows that the adherents of other religions were 4 or 0.6%.  The majority of the 
respondents used for this study were the adherents of the two most popular religions in the 
location of the study (South West Nigeria) but it is interesting to note that the adherents of other 
religions are identifiable among the health workers, family caregivers and the patients used for 
this study. 
 
 
84 
 
 
Part B: Presentation of the Results on the Test of Contributions and Strengths of the  
   Relationship between the Independent and Dependent Variables. 
This section of chapter four deals with the presentation of the result pertaining to the test of 
prediction and extent of contribution of the independent variables on the dependent variable as 
well as their strength of the relationship. The presentations were done on the basis of each 
research question and hypothesis raised. Each result and finding is clearly presented in table 
form followed with interpretations and detailed discussion. The raw data of the joint prediction 
of psychological support was presented in appendix iv.  
85 
 
 
4.1 Perception of terminally ill patients, family caregivers and health workers on  
palliative care  
This portion deals with the examination of perception of the terminally ill, family 
caregivers and health workers on palliative care as raised by objective one which examined the 
perception of the three sets of respondents used for the study on palliative care. This was 
obtained by the responses of the three categories which were calculated using mean scores and 
weighted mean X of the three sets of respondents. This was done in three parts; each for the three 
categories of respondents 
(A)  The Terminally ills: 
Table 4.1a: Mean scores of the perception of terminally ill patients (psychosocial support 
and family integration) on palliative care 
S/N Psycho-Social Support SD D A SA Mean S.D 
1 There is a special person who is around when I am in need. 2  16 85 99 3.39 .68 
1.0% 7.9% 42.1% 49.0% 
2 There is a special person with whom i can share my joys and 1 16 96 89 3.35 .65 
sorrows. 1.5% 7.9% 47.5% 44.1% 
3 My family really tries to help me. 2 7 112 81 3.35 .60 
1.0% 3.5% 55.4% 40.1% 
4 I find peace in my place of worship. 9 11 87 95 3.33 .77 
4.5% 5.4% 43.1% 47.0% 
5 I get the emotional help and support I need from my family.  2 11 120 69 3.27 .60 
1.0% 5.4% 59.4% 34.2% 
6 I can talk about my problems with my family.  4 12 115 71 3.25 .65 
2.0% 5.9% 56.9% 35.1% 
7  Have a special person who is a real source of comfort to me. 3 21 103 75 3.24 .69 
1.5% 10.4% 51.0% 37.1% 
8 There is a special person who is a real source of comfort to me. 5. 15 108 74 3.24 .70 
2.5% 7.4% 53.5% 36.6% 
9 I have support in what I do. 7 16 127 52 3.11 .68 
3.5% 7.9% 62.9% 25.7% 
10 I am happy about my relationship with other family members. 11 24 111 56 3.05 .78 
5.4% 11.9% 55.0% 27.7% 
11 My family is willing to help me make decisions.  8 24 127 43 3.01 .70 
4.0% 11.9% 62.9% 21.3% 
12 I have understanding of my present condition.  9 42 102 49 2.95 .70 
4.5% 20.8% 50.5% 21.3% 
13 I have information that helps me overcome my difficulties.  12 54 109 27 2.75 .76 
5.9% 26.7% 54.0% 13.4% 
14 I can face my problems.  10 74 93 25 2.66 .76 
5.0% 36.6% 46.0% 12.4% 
15 I have friends with whom I can share my joy and sorrow.  19 73 86 24 2.57 .82 
9.4% 36.1% 42.6% 11.4% 
16 I have financial problems.  21 68 90 23 2.57 .83 
10.4% 33.7% 44.6% 11.4% 
17 I can talk about my problems with my friends.  17 74 95 16 2.54 .76 
8.4% 36.6% 47.0% 7.9% 
18 My friends really try to help me. 17 77 92 16 2.53 .76 
8.4% 38.1% 45.5% 7.9% 
19 I can count on my friends when things go wrong.  17 95 72 18 2.45 .77 
8.4% 47.0% 35.6% 8.9% 
20 I feel I am a burden to my friends.  37 77 71 17 2.34 .87 
18.3% 38.1% 35.1% 8.4% 
 Weighted x = 3.14 
86 
 
 
 
Interpretation and discussion:  
The rating of the perceptions of the respondents on the Psychosocial-Supports and family 
integration on palliative care for the terminally ill patients are shown on table 4.1a on the 
previous page. The summary of the ratings goes thus:  
“There is a special person who is around when I am in need” (Mean = 3.39) ranked 
highest by the mean score and was followed by “there is a special person with whom I can share 
my joy and sorrows” (Mean =3.35), “My family really tires to help me (Mean = 3.35). “I find 
peace in my place of worship” (Mean =3.33). “I get the emotional help and support I need from 
my family” (Mean =3. 27). “I can talk about my problems with my family” (Mean = 3.25) “I 
have a special person who is a real source of comfort to me” (Mean = 3.24). “There is a special 
person in my life who cares about my feelings” (Mean = 3.24). “I have support in what I do” 
(Mean = 3. 11), “I am happy about my relationship with other family members” (Mean =3.05), 
“My family is willing to help me make decisions” (Mean 3.01). “I have understanding of my 
present condition” (Mean =2.95). “I have information that helps me overcome my difficulties” 
(Mean = 2.75). I can face up to my problems (Mean = 2.66), “I have friends with whom I can 
share my joys and sorrows” (Mean = 2.57). “I have financial problems” (Mean = 2.57). “I can 
talk about my problems with my friends” (Mean = 2.54). “My friends really try to help me” 
(Mean 2.53). “I can count on my friends when things go wrong” (Mean 2.45) and lastly by “I 
feel I am a burden to my friends” (Mean 2.34) respectively weighted mean assumed for 3.14. 
It must be noted that only the 202 terminally ill patients‟ respondents used for this study 
responded to various question statements asked. The mean (X) scores were determined and the 
weighted average mean was calculated. In the table 4.1 above, all the 20 items listed obtained 
high mean scores of between 2.34 and 3.39 out of a maximum score of 4.00. These X scores are 
high signifying that the respondents (patients) have positive opinions about the psychosocial 
supports and family integrations. The weighted X score of 3.14 also attested to the fact that 
psychosocial supports and family support and family integrations enhanced the palliative care 
offered to terminally ill patients.  
Out of 20 item questions for the terminally ill on their perception of palliative care item 
no 9 which that states” I have support in what I do” carried the highest percentage of 62.9% i.e 
(127 respondents) while item no 5 “ I get the emotional help and support I need from my family 
carried 59.4% (i.e 120 respondents), Item 13 however states that “I have information that helps 
87 
 
 
me overcome difficulties carried 54% (i.e 109 respondents), however, item 16 and 18 carried the 
highest standard deviation  of  .87 and .82 respectively, confirming the importance of various 
types of support in palliative care, the holistic nature of the care, (WHO, 2002) interdisciplinary 
approach in palliative care (Seymour, Clark 2003, psychological effect that terminal illness could 
have on the sufferer (Brazil, Howell, & Bednard 2005). The highest mean score between 2.34 
and 3.39 accounted for the positive significance of the above items on the outcome of this study.  
In line with the above. Blanch (2000) and Holloway, (2003) argued that, palliative care 
requires a multidisciplinary approach to be effective.  Such approaches include psychological 
and social supports as well as family integration in order to achieve effective palliative care 
services for the terminally- ill persons. In the same vein, Tanchel (2003) stated that, the family of 
the terminally- ill patient is at the centre of the unit of care and their supports and education are 
vital because losses suffered by the patients will be experienced by the family. Hence, Davies 
and Steele (1995) argued that, it is important to give family members opportunities to talk as 
individuals as well as in groups, regarding the palliative care services provided to their loved 
ones. 
The above findings also support the literature that palliative care is an approach that 
improves the quality of life of patients facing problems associated with life threatening illness 
and their families through prevention and relief. To further buttress the influence of psychosocial 
support and family integration on palliative care, this study revealed a weighted mean and 3.4 
out of maximum mean (X) of 4.0. this implies that the perceptions of the total respondents were 
high over the influence of psychosocial support and family integration. This finding was in line 
with the submission of Morrow (2011). 
“Palliative care with supports are activities that aim to 
enhance the quality of life of patients and their families who 
are faced with serious debilitating illness, it also focuses on 
clear communication, advance planning and coordination of 
care” 
 
This study also attested to the fact that effective palliative  care for the terminally ill 
require all supports including the moral and family integration which support the argument of 
WHO (1998) that: 
 
Effective palliative care requires a broad multidisciplinary 
approach that includes the family and the use of available 
88 
 
 
community resources that can successfully be implemented even 
if resources are limited  
It is impossible for the individual with the diagnosis of terminal illness to cope alone, 
his/her problem automatically becomes the concern of family member. Seeking health care, thus, 
requires that significant person (s) in the family accompanies the patient to the hospital; every 
attempt to make them feel isolated is reduced as much as possible. Again, the holistic approach 
in palliative care encompasses the multidiscipline‟s involvement in their care, hence, doctors, 
nurses, social workers, physiotherapists and spiritualist have a stake in their effective 
management to relieve suffering, and improve psychological effect that illness would have 
caused them. This is in line with the submission of Isabelle (2009) that psychological support for 
the terminally- ill should be part of comprehensive programming, and not a stand alone service, 
the interventions should include a variety of approaches such as counselling, family therapy and 
succession planning. 
Perception of palliative care by the terminally ill patients used for this study attested to 
the fact that opportunity to involve significant others in their management relieves them of the 
burden of feeling dejected and improves their quality of life. 
  
89 
 
 
(B) The Family Caregivers:  
The perceptions of family caregivers on palliative care of terminally ill patients as raised 
by objective 1 which examined the perceptions of the family caregivers on the palliative care. 
 
Table 4.1b: Mean scores of the perceptions of the family caregivers on palliative care  of 
the terminally ill patients  
 
S/N Family Support SD D A SA Mean S.D 
1 His/Her ailment has caused some emotional disturbance.  3 30 114 55 3.09 .69 
1.5% 14.9% 56.4% 27.2% 
2 Caring for Him/Her has altered my personal plans.  7 36 93 66 3.08 .80 
3.5% 17.8% 46.0% 32.7% 
3 His/Her ailments has created alteration in the family‟s 16 38 77 71 3.00 .93 
role performance.  7.9% 18.8% 38.1% 35.1% 
4 The care positively influences His/Her well-being.  15 23 119 45 2.96 .80 
7.9% 11.4% 58.9% 22.3% 
5 I am really prepared to take care of Him/Her. 10 32 118 42 2.95 .75 
5.0% 15.8% 58.4% 20.8% 
6 His/Her Illness has caused financial constraints.  4 54 95 49 2.94 .77 
2.0% 26.7% 47.0% 24.3% 
7 I prefer to care for Him/Her in the hospital. 25 47 55 75 2.89 1.05 
 12.4% 23.3 27.2% 37.15  
8 Caring for Him/Her is restrictive.  20 56 90 36 2.70 .88 
9.9% 27.7% 44.6% 17.8% 
9 I have sleep pattern disturbance. 34 55 81 32 2.55 .95 
16.8% 27.2% 40.1% 15.8% 
10 He/She exhibits altered behavioural pattern. 23 78 75 26 2.51 .86 
11.4% 38.6% 37.1% 12.9% 
11 I have heard of palliative care before.  37 63 73 29 2.47 .95 
18.3% 31.2% 36.1% 14.4% 
12 I get easily tired as a result of caring for Him/Her. 21 84 82 15 2.45 0.78 
10.4% 41.6% 40.6% 7.4% 
13 Caring for Him/Her has been convenient. 29 87 73 13 2.35 .80 
14.4% 43.1% 36.1% 6.4% 
14 His/Her illness has caused me a feeling of resentment.  26 91 73 12 2.35 .78 
12.9% 45.0% 36.1% 5.9% 
15 Palliative care is meant for those nearing end of life. 52 63 56 31 2.33 1.02 
25.7% 31.2% 27.7% 15.3% 
16 I prefer to care for my patient at home.  55 67 55 25 2.25 .99 
27.2% 33.2% 27.2% 12.4% 
17 Other family members have dumped His/Her care to me. 43 84 62 13 2.22 .86 
21.3% 41.6% 30.7% 6.4% 
18 My financial resources are adequate to pay hospital bill. 36 107 47 12 2.17 .79 
17.8% 53.0% 23.3% 5.9% 
 Weighted x = 3.10 
 
90 
 
 
Interpretation and discussion:  
The rating of the perception of the responses of the family caregivers on the palliative 
care services of the terminally ill patients are shown on table 4.1b on previous page. The 
summaries of the ratings goes thus:  
“His/Her ailment has caused some emotional disturbance” (Mean = 3.09) was rated 
highest by the mean score and was followed by “Caring for Him/Her has altered my personal 
plans” (Mean= 3.08), His/Her ailments has created alteration in the family‟s role performance 
(Mean = 3.00). “The care positively influences His/Her wellbeing” (Mean =2.96), “I am really 
prepared to take care of Him/Her” (Mean =2.95), “His/Her illness has caused financial 
constraints” (Mean =2.94), “I prefer to care for Him/Her in the hospital” (Mean =2.89), “Caring 
for Him/Her is restrictive” (Mean =2.70), “I have sleep pattern disturbance” (Mean 2.55), 
“He/She exhibits altered behavioural pattern” (Mean =2.51), “I have heard of palliative care 
before” (Mean =2.47), “I get easily tired as a result of caring for Him/Her” (Mean = 2.45), 
“Caring for Him/Her has been convenient for me” (Mean =2.35), “His/Her illness has caused me 
a feeling of resentment” (Mean =2.35), “Palliative care is meant for those nearing end of life” 
(Mean =2.33), “I prefer to care for my patient at home” (Mean =2.25), “other family members 
have dumped His/Her care to me” (Mean =2.22) and lastly, by “My financial resources are 
adequate to pay hospital bill” (Mean =2.17). 
Table 4.1b above further shows the respondents‟ degrees of opinions on the research 
question two above. It must be mentioned that 202 family care givers used for this study 
responded to all the 18-items question statements raised. The X scores were determined and the 
weighted average X was calculated. In the table, all the 18 items listed obtained high X scores of 
between 3.09 and 2.17 out of a maximum score of 4.00. These X scores are high, implying that 
all the respondents (family caregivers) perceived caring for their terminally ill relations 
differently. For example while 169 respondents agreed that caring for terminally-ill patients have 
caused them emotional disturbance, only 33 respondents disagreed. Again, while 143 
respondents (family caregivers) disagreed to the fact that they  are financially capable of caring 
and 59 caregivers agree that they can cope financially. 
 The in-depth interview conducted with one of the family caregivers revealed that: 
I see palliative care for my relation as an appropriate and 
effective type of management which has helped him and we his 
children in so many ways. There is clear communication between 
the health care team the family and the patient. This allows us to 
91 
 
 
express what my Dad‟s feelings were and also our anxieties were 
frequently reassured about his health the details of all stages of 
management were explained. This, of course, had a positive 
impact on his health moreso that his wife and children are giving 
him support as required and the health workers have been 
wonderful. Its like a home away from home.  
 
It could be inferred from different perceptions of the family caregivers that caring for 
terminally ill patients is traumatic, burden-some, hopeless, stressful, resentful and problematic. 
In connection with the above, Monroe (1999) warns that the caring and diagnosis of terminally-
ill persons is traumatic for everyone, hence the knowledge and understanding of the crisis are 
important as the patients‟ realities change within seconds. In the same manner, Baker and Teno 
(2000) stressed that supporting patients and other family members with redefining requires that 
health care providers appreciate how difficult it is for family members to care for their 
terminally-ill loved ones. In this sense of reality, Kissan & Kenzie (2003) advised that: “when 
former patterns are no longer feasible, health workers should help them to consider adjustments 
or alternatives”. 
 Again, the nature of palliative care is to ensure both psychological and social aspects of 
care for the terminally-ill in which assistance in every area should be rendered for the loved one. 
Hence, good grooming and overall care help in health  promotion, improves quality of life and 
ensures dignity (Jeffery, 2003). But Tanchel (2003) argued that after the supports have been 
provided by all concerned, even if the inevitable (death) happens, the good memory of how the 
loved one has been taken care of them will help the family member cope better in their 
bereavement. To buttress the above findings, another family caregiver said that: 
Ever since my mother‟s illness started, I had to leave Lagos to 
come and assist in her care. I never knew what she described 
to me as a “lime sized boil” could result into her having a 
major operation done. She was counselled and I saw that she 
had a strong will and was quite positive that all would be well 
with her. I am really prepared to support and take care of her. 
When we got to the stage of her having to commence 
chemotherapy, we could afford four courses out of the eight 
courses that were prescribed for her. We then had to ask other 
significant family members for financial assistance which they 
responded to within the limits of what they could afford. We 
are just trusting God for my mum‟s gratuity to be ready before 
we exhaust the funds we have at present.  
 
92 
 
 
The above findings reveal further that integrations of the efforts of the family caregivers 
with those of the palliative care for the ill persons adequately reassured the patients themselves. 
Hence, Tanchel, (2003) argued that: 
the family integrated components to terminal patient care allows 
the patient not be treated as individual with problems and 
symptoms, but also as a family member whose reactions 
interlock with the support system (p 121). 
 
 Again, Davies & Steele (1995) buttressed the above that, family members must be given 
opportunities to talk as individuals as well as in groups regarding the palliative care(s) for their 
loved ones. To show how important the efforts of the family members are at enhancing the 
palliative care for the ill patients, WHO (2002) stressed that palliative care is an approach that 
improves the quality of life of patients and their families facing the problem associated with life 
threatening illness. Again, Soyanwo (2004) opined that palliative care is the active holistic care 
of patients with advanced progressive illness, management of pain, provision of psychological, 
social, spiritual and moral supports. In summary, Bolen (1999) and Canto-Grace (2007) in 
separate studies made us realise that supports can come from varieties of sources for the 
terminally-ills such as: the family, friends, romantic partner, pets, community ties and co-
workers. 
Out of the 18-item questionnaire for the family caregivers, item 4 and 5 carried the 
highest percentage of 58.9% and 54.4%, respectively, in response to the statements “ the care 
positively influences her well-being and “ I am really prepared to take care of him” followed by 
item 1 that states “Her ailment has caused some emotional disturbance” 56.4%. These are in 
keeping with the positive influence of the family. In palliative care, quite a significant number 
were really prepared to take care of their terminally-ill relatives, they are emotionally attached. 
David & Steele (2000) expressed that wisdom being passed on to their loved ones, helps family 
members to communicate what they might not be able to verbalise to their loved ones 
(Andershed 2004), writing of an ethical will could thus, be given consideration. The last item 
(18) which states that “My financial resources are adequate to pay hospital bill”. Over 50% 
family caregivers disagree with this statement, they are the ones in the eye of the storm, they go 
around from one end to the other end, they are well informed about the financial implication the 
illness has on them. So the submission of Olievere (1990), is in support of this fact that the 
family caregivers have to deal with poverty, unemployment and poor housing brought about by 
93 
 
 
the terminal illness of their loved ones. Fraser‟s (2002) belief is that help has to be sought from 
voluntary agencies and philanthropist who can assist.  
  (C) The Health Workers: 
 What is the perception of health workers on the palliative care as raised by research 
objective 1 of the study which examined the perception of the health workers on palliative care 
of the terminally-ill?  
Table 4.1c: Mean scores of the perception of Health workers on the palliative care 
for the terminally ill patients. 
 
S/N Palliative Care Services SD D A SA Mean S.D 
1 Palliative care should be the standard medical 1 6 64 131 3.61 .58 
treatment for patients who are suffering from a .5% 3.0% 31.7% 64.9% 
terminal illness.  
2 Pain medication should be given as needed to 3 4 73 122 3.55 .63 
terminally ill patients. 1.5% 2.0% 36.1% 60.4% 
3 Spiritual care should include counselling the 4 15 91 92 3.32 .70 
terminally-ill patients.  2.0% 7.4% 45.0% 45.5% 
4 Patients should be maintained in a pain free state.  13 13 87 89 3.25 .83 
6.4% 6.4% 43.1% 44.1% 
5 Patients should have the right to determine their 6 29 100 67 3.13 .75 
own degree of medical intervention.  3.0% 14.4% 49.5% 33.2% 
6 Patients have the right to determine their own 6 30 95 71 3.13 .77 
degree of psychosocial intervention.  3.0% 14.9% 47.0% 35.1% 
7 Complete pain relief is a reasonable goal even 12 29 103 58 3.01 .80 
when the pain is not caused by a terminal 5.9% 14.4% 51.0% 28.7% 
condition. 
8 Addiction to oral morphine is not a serious issue 17 45 94 46 2.81 .87 
given that terminally-ill patients have a short 8.4% 22.3% 46.5% 22.8% 
time to live.  
9 Opening discussions of end of life care should be 31 58. 66 47 2.61 1.00 
deferred until there is no further effective 15.3% 28.7% 32.7% 23.3% 
curative treatment available.  
10 Pain at the end of life is an inevitable part of the 44 61 65 32 2.42 .99 
dying process.  21.8% 30.2% 32.2% 15.8% 
11 As a rule, terminally-ill patients prefer not to talk 34 91 66 11 2.28 .80 
about death and dying.  16.8% 45.0% 32.7% 5.4% 
12 I do not like talking about death and dying with 41 82 65 14 2.27 .86 
patients.  20.3% 40.6% 32.2% 6.9 
13 The most appropriate person to make end of life 44 83 55 20 2.25 .90 
decisions is the patients primary care provider.  21.8% 41.1% 27.2% 9.9% 
14 Estimation of pain by a Health worker is a more 57 101 33 11 2.01 .83 
valid measure of pain than patient‟s self report. 28.2% 50.0% 16.3% 5.45 
15 A patient should experience discomfort prior to 72 85 31 14 1.92 .87 
receiving the next dose of pain medication.  35.6% 42.1% 15.3% 6.9% 
  
 Weighted x = 3.21 
 
 
94 
 
 
Interpretation and discussion:  
The perceptions of the health workers on the Palliative Care for the terminally-ill patients 
are shown on table 4.1c above. The summaries of the ratings are as follows:   
“Palliative care should be the standard medical treatment for patients who are suffering 
from a terminal illness” (Mean=3.61) was ranked highest by the mean score and was followed by 
“Pain medication should be given as needed to terminally-ill patients”. (Mean=3.32). “Patients 
should be maintained in a pain free state” (Mean=3.25). “Patients should have the right to 
determine their own degree of medical intervention” (Mean=3.13), “Complete pain relief is a 
reasonable goal even when the pain is not caused by a terminal condition” (Mean=3.01), 
“Addiction to oral morphine is not a serious issue given that terminally-ill patients have a short 
time to live” (Mean=2.81), Opening discussions of end of life care should be deferred until there 
is no further effective curative treatment available (Mean=2.61), “Pain at the end of life is an 
inevitable part of the dying process” (Mean=2.42) “As a rule, terminally-ill patients prefer not to 
talk about death and dying” (Mean=2.28), “I do not like talking about death and dying” 
(Mean=2.27), “The most appropriate person to make end of life decisions is the patients‟ primary 
care provider” (Mean=2.25), “Estimation of pain by a health worker is a more valid measure of 
pain than patient self report” (Mean=2.01), and lastly that “a patient should experience 
discomfort prior to receiving the next dose of pain medications” (Mean=1.92). 
Table 4.1c above similarly shows the respondents degrees of opinions on the research 
question one. It must be emphasised that only the health workers (medical doctors, nurses, 
physiotherapists and social workers) responded to various question statements raised. The X 
scores were determined and the weighted average was calculated. All the 15 items listed 
obtained high X scores of between 3.61 and 2.01 out of the maximum score of 4.00. Only item 
no 15 recorded X score of 1.9 which is less than average. These X scores are high implying that 
the health workers have positive perceptions about the palliative care provided for the 
terminally-ill patients. 
 
 Out of the 15-item questions on health workers perception of palliative care for 
terminally-ill, significant percentage of 64.9% (131) believes that palliative care should be the 
standard medical treatment for patients suffering from terminal illness. Their level of awareness 
on palliative care is significant. On item 2 that states that pain medication should be given, as 
needed, to terminally-ill patients, 122 health workers (i.e 60.4%) out of 202 believed that they 
95 
 
 
should be maintained in a pain free state as much as possible. This is in keeping with Soyanwo‟s 
(2004) definition of palliative care as the active holistic care of patients with advanced 
progressive illness, management of pain and other symptoms with provision of psychological, 
social and spiritual supports. 
 Over 50% health workers also disagree with the statement that health workers‟ pain 
estimation is more valid than patient‟s report. The patient is the most important entity in 
palliative care and his feelings and worries need to be taken care of. As long as he is not 
unconscious, the ability to express discomfort is a more reliable report than any health workers‟ 
evaluation.  
It could be deduced from these perceptions that palliative care services are essential 
components of comprehensive package of care for people with terminal illness. World Health 
Organization (2000) buttressed this that, palliative care is an important aspect of care that uses 
team approach to address the needs of the patients and their family, including bereavement 
counselling, if indicated. On the care for the terminally-ill by the health workers, Davies (2000) 
argued that palliative care professionals do help patients find ways, to relieve their sense of 
burden and to provide patients with opportunities to talk about their fears and concerns and to 
consider with whom they want to share worries. It can be summed-up that, the major role of the 
health workers is to provide psychosocial supports to patients and families facing terminal 
illness. 
 Furtherance to this, in-depth interview with a doctor reveals that: 
The central goal of palliative care is relief of suffering. 
With advanced illnesses that are life threatening, pain is 
imminent for the sufferer (i.e the patient). So relief of 
pain becomes a priority, maintaining the patient in a 
pain free state would help to reduce suffering. Clinical 
experience has revealed that attending to the 
psychosocial and medical management of the patients 
would help in reducing their suffering. The 
multidisciplinary nature of palliative care helps to see 
each member in that team as an important entity whose, 
function in the care of that patient cannot be over 
estimated.  
 
On the perception of psychological care, he further stressed that:  
The spiritual care requires that the doctor, at least for 
that period of time, identify the patients reverend, 
96 
 
 
pastor, imam, traditional priest etc as applicable are 
involved. The psychological care involves taking care 
of the psychological pain e.g a parent concerned about 
who to leave the children with, worried about whether 
or not they would suffer. The issue of the will needs to 
be settled and the person who would collect the death 
certificate needs to be ascertained.  
 
In the same vein, a Nurse reported that: 
Patient‟s quality of life has improved tremendously since the 
advent of palliative care in this health institution. The 
terminally ill is not to be regarded as an individual waiting for 
death sentence, but rather a significant member of a family 
whose condition affects the smooth running of that family 
setting. Hence, he/she has the right to correct information about 
his health, the right to be treated with dignity the right to relief 
him of suffering, prevent him from agony of pain and 
accessibility to the different health professionals involved in the 
patient‟s care. All these would help improve the psychological, 
social and spiritual well-being of the patient and family.  
 
The above findings also lay credence to the argument of Kearney (2000) that the potential 
for healings in the face of progressive disease is a potential rooted in the special relationship and 
positive perception between the healer(s) and the sufferers (patients). Brazil, Howell and 
Bednard (2005) buttressed that the essence of skilled palliative caregivers is to facilitate the 
caring process through a combination of science, presence, positive perception, openness, 
compassion, mindful attention to detail and team work. 
Palliative care is designed to provide the best quality of life for terminally-ills and their 
family. Hence, Soyanwo (2004) argued that: 
 
“Palliative care is the active holistic care of patients with 
advanced progressive illness management of pain and other 
symptoms with provision of psychological, social and spiritual 
supports”. 
         
 In the light of the above, the medical personnel‟s and their supporting staff and the social 
workers do not give up and ignore or suspend the care given to the terminally ills. Hence, WHO 
(2002) said that palliative care is an approach which improves the quality of life of the 
terminally-ill and their families facing the problem associated with life  threatening illness, 
97 
 
 
through the prevention and relief of suffering by means of early identification and treatment of 
pain and other physical, psychosocial and spiritual problems. 
 The need for up to date knowledge of palliative care among health workers requires that 
every behaviour the patients put up in the course of caring affects the patient positively or 
negatively. This is in support of the responses that confirm the submission of Brazil, Howell and 
Bednard (2005) that it is impossible for any health worker to practise what they do not know and 
usually traumatic if the thought haunts after the patient dies, but if the terminally-ill patient is 
under the care of a skilled palliative care personnel, the mere fact that both the patient and the 
family care giver are struggling to live in the face of progressive debilitating disease, the skill 
and knowledge of the health worker would make him/her care and support the patients and their 
family care giver appropriately, thus find meaning and peace in the face of death. 
 The finding of this study reveals that, palliative care requires more than prescriptions and 
ingestion of drugs. It can, however, be said that effective palliative care requires that caregivers 
work cohesively and in collaboration to ensure the physical, social, psychological and spiritual 
wellbeing of the terminally-ill patients. 
From the responses of the three categories of respondents used for this study, it can be 
deduced that each category has different perception of palliative care while the health workers 
were concerned about the relief of symptoms for the terminally ill, management of pain, and 
giving adequate information about expectations as well as possible outcome of illness, their 
quality of life thus becomes paramount, and this helps to make life bearable for as long as they 
live. The family caregiver, however, is seen at the centre of care for their ill family member, the 
extent to which the patient can help himself/herself is limited. So the family caregiver does the 
running around to ensure things are done appropriately for the patient, ranging from physical 
care, financial support, ensuring significant family members are well informed about the state of 
health and necessary assistance sorted as required. They are comfortable with palliative care 
because it allows flexibility. The patient (i.e terminally-ill), however, is in a state of dilemma as 
the diagnosis of terminal illness is enough to throw the patient in turmoil. This brings about 
thoughts of the past, self-esteem and self concept are negatively affected and obviously cannot 
wade through the stormy waters alone, the multidisciplinary approach of health workers, 
extremely essential in palliative care, family care giver makes the terminally-ill see 
himself/herself at the centre of care, and losses suffered by the patient is experienced in parallel 
98 
 
 
by the family and in seeking spiritual care, their belief comes to play a vital role in their recovery 
and existence. This also allows time to pay attention to any unfinished business that might pose 
problem at the end of life.    
4.2 Joint predictions of psychosocial support and family integration on palliative care of 
terminally ill patients in UCH 
This portion of part B in chapter four deals with the joint predictions of the independent variables 
on the dependent variables and it is anchored on research question one (RQ2) which states that: 
To what extent does psychosocial support and family integration improve palliative care service 
of the terminally ill patients in UCH? The data collected from the respondents on this were 
subjected to multiple regression while the results obtained were presented in tables 4.2a and 4.2b 
followed by detailed discussion. 
 
 
Table 4.2a: Joint prediction of psychosocial support and family integration on palliative 
care of terminally ill patients. 
 
Model Sum of squares DF Mean F Sig. 
square 
 
Regression 311.661 12 25.972 25.245 .000 
Residual 194.438 189 1.029   
Total 506.099 201    
R= .785 
2 
R = .616 
2
Adj R  = .591 
 
99 
 
 
Table 4.2b Relative predictions of psychosocial support and family integration on palliative 
care process. 
 
Model Unstandarized Standardized T Sig. 
Coefficient  Coefficient 
B Std. Error Beta Contributions   
Psychological support .507 .113 .376 4.508 .000 
Social support .980 .225 .966 4.345 .000 
Family Integration -.303 .104 - . 755 -2.914 .004. 
 
Interpretation and discussion 
It was shown in the table 4.2a above that the joint effect of the three independent 
variables of psychological support, social support and family integration was significant  
2 2
(F(12.189)=25.245 ; R=.785 R = .616; Adj. R  =.591; p< 0.5). About 62% of the variation in 
palliative care process was accounted for by the independent variables while the remaining 38% 
was not due to chance. This, therefore, reveals that palliative care process in UCH, to a large 
extent, is being determined by the combination of the three independent variables. Also, the 
result of table 4.2b shows the relative contribution of each of the three independent variables on 
the palliative care of terminally-ill patients as follows: social support (β= .966, p< .05); 
psychological support (β= .376, p< . 05) and family integration (β = .755, p< .05). It is noted 
from the above results that social support predisposed palliative care the most, followed by 
psychological support and family integration. 
    The study, like others before it, reveals effect of the three independent variables on 
palliative care process, hence the combination  of all the three independent variables have 
positive impact on effective palliative care of terminally-ill on relative degrees, This study, 
therefore, agrees with the submission of Soyannwo (2004) that palliative care is the active 
holistic  care of patients with advanced progressive illness, management of pain and other 
symptoms with provision of psychological, social and spiritual supports. 
This is also supported by WHO (2002) and Soyanwo (2004) that defined palliative care 
as an approach that improves the quality of life of patients facing the problems associated with 
life threatening illnesses through prevention and reduction of suffering by early identification, 
and relief of pain and other problems, be it physical, psychological and spiritual. The finding of 
100 
 
 
this study reveals that most of the terminal ill patient identified that the key components to 
psychological support (Behavioural support, diversional support, counselling services and 
emotional support) and social support (companionship, spirituality, Regular visitation and 
Rehabilitative support) were the essential factors that are required by these terminally-ill in order 
to enhance effective palliative care. Furthermore Hearn, Lakes & Young (2008) views 
psychological support as helping to build resilency in both adult and children faced with life 
threatening / life limiting conditions. It supports families to provide for the physical, emotional, 
economic, educational and health needs for their loved ones. This, inadvertently, makes them 
able to understand and deal with the unexpected. 
It can also be deduced from the Respondents‟ responses that paying attention to relief of 
pain and reducing suffering as well as ensuring other physical, and spiritual well-being would go 
a long way in ensuring their psychological balance Sheldon (1997) argues that ensuring 
psychological well-being of the terminally-ill helps to build internal and external resources for 
them and their families. This, however, helps them to be able to understand and deal with 
adverse events. The result further showed that the psychosocial support needed by the individual 
faced with life limiting illness is so paramount that it can never be a stand alone phenomenon, all 
hands must be the on deck. This is in agreement with Tanchel (2003) when she claims that 
illness suffered by the patient is experienced also by those significant others who are involved in 
his care as that ill person becomes the main focus of attention in that environment, losses 
suffered also would inadvertently affect those close to them. In Lee‟s (2006) study on controlling 
patients involvement in decision-making in palliative care, she disagrees that the terminally-ill 
should be allowed to make decisions on their own, this idea, makes the patient feel irrelevant as 
they are not given adequate and up-to-date information about their condition and expectation. 
Hence, whatever instruction they give to them creates a kind of psychological problem for them 
which would do more harm than the intended good since they are not carried along in decision-
making on matters that concern their health. 
The purpose of the study was also to identify how psychosocial support and family 
integration influence palliative care of the terminally-ill. Results, however, showed, that all the 
components of the independent variables positively correlated with palliative care of the 
terminally-ill as “having support in what I do” carried the highest percentage of responses among 
the total respondents of terminally-ill patients used for the study. However, the goal of palliative 
101 
 
 
care is to improve quality of life across the illness trajectory through the relief of suffering, 
including care of the dying and bereavement follow-up Coyle (2002) reported the exact words of 
a palliative care patient that illness both affects and is affected by all aspects of the individual‟s 
being, Kearney (2000) opined that the potential for healing in the face of progressive disease is a 
potential rooted in the special relationship between the healer and the sufferer. The genuine 
warm and compassionate relationship of a palliative care or hospice care provider, with his or her 
patient is frequently a healing relationship. 
 
4.3 Psychological support and palliative care of Terminally ill patients          
This portion of the part B of chapter four deals with the examination of the extent to which the 
components of psychological support contribute to palliative care of terminally-ill patients in 
UCH. This section is derived from the results presented in the tables 4.3a, 4.3b and 4.3c which 
were obtained from data collated on the null hypotheses one (HO1) which states that: there is no 
significant relationship between each of the components of psychological support and palliative 
care of terminally-ill patients. The data collected from the respondents on this were subjected to 
multiple regression as well as correlation matrix while the results obtained were followed by 
detailed discussion. 
  
Table 4.3a Joint predictions psychological support (diversional support, behavioural 
support, counselling services, emotional support) on palliative care process of terminally-ill 
patients. 
Model Sum Squares DF Mean-Square F Sig. 
Regression 285.314 5 57.063 50.657 .000 
Residual  220.785 196 1.126 
Total 506.099 201 1.126   
R= .751  
2
R  = .564 
2
Adj R = .553 
 
 
102 
 
 
Table 4.3b Relative predictions of diversional support, behavioural support, counseling 
services emotional support and educational counselling on palliative care process. 
Model Unstandardized Standardized T Sig. 
Coefficient  Coefficient 
B Std. Error Β   
 (Constant) .842 555  1.517 .131 
Diversional support -4.649E-02 .101 -.034 -.462 .644 
Behavioral support  .275 .086 .204 3.213 .002 
Counseling support .137 .079 .101 1.717 .088 
Emotional support .480 .079 .473 6.034 .000 
Educational support .273 .103 .180 2.659 .008 
 
Interpretation and discussion 
It was shown in table 4.3a above that the joint effect of independent variables 
(diversional support, behavioural support, counselling services, emotional support and 
educational counselling on palliative care process was significant (F (5.196) = 50.657; R = .751; 
2 2
R = . 564; Adj R  = .533; P<. 05) . About 56% of the variation in palliative care process was 
accounted for by the independent variables while the remaining 44% was not due to chance. 
The result above shows diversional support, behavioural support, counselling services 
and emotional support are good predictors of palliative Care process.    
Also, table 4.3b shows the relative contribution of each of the components of psychological 
support on the dependent: diversional support (β = .473, p<.05); behavioural support (β =.204, 
p<.05); counseling services (β .180, p<.05) on palliative care process. Hence, while behavioural 
support, emotional support and educational counselling were significant diversional support and 
counselling services were not. The finding of this study agrees with Cassel (2000) that the nature 
of palliative care and the approach of its interdisciplinary team are dependent on the needs of the 
patient and the resources available, this is also supported by Morrow (2011) that the palliative 
patient have access to psychological counsel, pain management, fatigue management and 
rehabilitation. The earlier a diagnosis of terminal illness is made, the better for the patient and his 
/her family caregiver. Management of symptoms as well as the  aforementioned variable are 
103 
 
 
brought to bear and in the study followed by systematic mode of management. It gives insight 
into all aspects of care. Apart from the WHO (2002) definition of palliative  care as the active 
total  care of the patients whose disease is not responsive to curative treatment, control of pain, 
be it psychological, social, the goal, however, includes integrating the psychological and spiritual 
aspect of patient care. This is supported by the responses of the participants that curative and 
behavioural therapies have been adopted to relieve them from anxiety, depression and stress. 
These therapies are able to explore the existing coping strategies and facilitating the development 
of new ones.   
In an in-depth interview with one of the nurses, she had this to say: 
“Palliative care is regarded as a specialised care, for people 
with terminal illness. Its focus is to provide relief from the 
symptoms, pain and stress brought about by the terminal illness. 
It is appropriate for any age, at any stage of illness and can be 
provided along with curative treatment. Palliative care utilises 
a multidisciplinary approach to patient‟s care in which all the 
professionals involved perform their tasks for the patient and 
family. These health professionals come together periodically to 
formulate a plan of care to reduce suffering in all areas of 
patient‟s life and also address physical, emotional, spiritual and 
social concerns that is brought about by the illness”. 
 
Hearney (1992) reported that guided imagery is another technique used to aid relaxation, 
and involving them in patient narrative encourages reminiscence by gaining insight into the 
patients‟ world. This enhances psychological support for the terminally-ill. Regnard and Kindlen 
(2001) explained further that a diagnosis of terminal illness and the challenge that a treatment 
regime presents can lead to distress for the patient as well as family members and friends, 
availability of palliative care team helps to assess each person and his/her family‟s situation and, 
thus, recommend effective ways of managing distress and other emotional and practical 
consequence of illness. This agrees with the significant result of emotional support, behavioural 
support and educational support in palliative care. 
Additional psychological support can also be given by care givers which serve to 
complement the ongoing support from families and communities (Fagbenle 2000). The fact also 
is that this support involved the process of meeting a person‟s emotional, mental and spiritual 
needs. The result is also in agreement with the worldwide discovery of health link (2006) that 
psychological and social supports are processes of meeting a person‟s emotional mental, and 
spiritual needs which are the essential elements of positive human development. Conclusively, 
104 
 
 
counselling activities for the terminal-ill play a vital role in palliative care practice and is 
regarded as a confidential discussion between the patients and their care providers. This is 
indicated at every step of management to make them, able to make informed choices and 
decision  related to the patient‟s health (ie educational counselling). In the light of this, Babalola 
(2007) reaffirms that counselling should be part of palliative care in order to help the patient and 
his family have up to date information about the illness and hence understand the best way to 
forge ahead in the face of uncertainty. 
Table 4.3c Multiple correlation showing the relationship between psychological support 
(Diversional support behavioural support, counselling services, Emotional support and 
Educational counselling and palliative care process. 
 
 Palliative Diversional Behavioural Counselling Emotional Educational 
care support support services support counselling 
process 
Palliative care 1      
process 
Diversional .538* 1     
support 
Behavioural .500** .526** 1    
support  
Counseling .451** .522** .515* 1   
services 
Emotional -686** .690** .365** .427**   
support 
Educational .610** .476* .494* .338** .657** 1 
counselling 
Mean 9.4554 5.6881 5.8218 5.6535 9.7475 6.6980 
S.D 1.5868 1.1576 1.1752 1.1797 1.5647 1.0476 
 
To also compliment the multiple regression results that showed the contention of each of 
the components of psychological support, the correlation matrix in table 4.3c revealed that all the 
five variables had strong positive significant relationship with palliative care with overall mean 
at 9.45 and standard deviation of 1.58. However the relative correlations were as ranked: 
105 
 
 
emotional support (r= .686), educational counselling (r=. 610); divisional support (r=.538); 
behavioural support (r=.510); and counselling services (r=.451).  
 
4.4 Social support and palliative care of terminally-ill patients 
This portion deals with the examination of the extent to which the components of social support 
contribute to palliative care of terminally ill patients. This section is from the results presented in 
tables 4.4a, 4.4b and 4.4c which were obtained from the data collated on null hypothesis two 
(H02) which states that: there is no significant relationship between each of the components of 
social support and palliative care of the terminally ill. The data collected from the respondents 
on this were subjected to multiple regression as were as correlation matrix while the results 
obtained were followed by detailed discussion.  
Table 4.4a Joint predictions of social support on palliative care process  
 
Model Sum of DF Mean square F Sig. 
square 
Regression 131.534 4 32.884 17.295 .000 
Residual 374.565 197 1.901   
Total 506.099 201    
R = .510; 
2
R = .260; 
2
Adj R  =.245 
 
Table 4.4b Relative predictions of social support (companionship, spirituality, 
rehabilitative support and regular visitation on palliative care process. 
 
Model Unstandardized Standardized T Sig. 
Coefficient  Coefficient  
 B Std. Error Β   
(Constant) 4.397 .734  5.993 .000 
Companionship -.268 .122 -.140 -2.189 0.30 
Spirituality .182 .087 .150 2.094 0.38 
Rehabilitative Support .435 .103 .275 4.236 .000 
Regular Visitation  .375 .096 .283 3.925 .000 
 
 
106 
 
 
Interpretation and discussion 
 It was shown in the table 4.4a above that the joint effect of independent variables on 
social support (companionship, spirituality, rehabilitative support and regular visitation) on 
2
palliative care process was significant R=.510; R = .260; Adj R2 = .245; p< .05). The result in 
table 4.4b also shows that the joint effect of companionship, spirituality, rehabilitative support 
2
and regular visitation on palliative care was significant (F(4,197) = 17.295; R=.510 R  =. 260, 
2
Adj. R  = . 245; p< . 05). About 26.0% of the variation in palliative care process was accounted 
for by the independent variables while the remaining 74.0% was not due to chance (Null 
hypothesis was therefore rejected) : companionship (β= .140, P <.05); spirituality (β = .150, P 
<.05); rehabilitative support (β= .275, P<.05) and regular visitation (β= .238, P<.05). 
 The result above shows that the relative contribution of each of the four independent 
variables on palliative care of terminally-ill patients correlated significantly as follows: 
companionship (β= .140, P<.05); spirituality (β= .150, P<0.5); Rehabilitative Support (β= .275, 
P<.05) and Regular Visitation (β= .238, P<.05).  
This agrees with Wills and Clark (1995) that social support is the perception and actuality 
that one is cared for, has assistance available from other people that make that individual part of 
a supportive network. These supportive resources can be emotional, informational and 
companionship in nature. Apart from this social support, health care has a complex effect on 
well-being, but it is calming and positive and changes one‟s assessment. Stressful event which 
would prevent the individual. (that is the terminally-ill in this study) from engaging in damaging 
behavioural responses (Taylor, 2011). The need for social support of patients with terminal 
illness remains pivotal for the palliative care practitioner, It is specifically concerned with the 
mental and emotional well-being of the patient and their family, including issues of self esteem 
and self efficacy. This is confirmed through an interview with one of the doctors that said:  
“I perceive psychological and social support of the terminally-
ill child as an irrevocable aspect of care for the innocent child 
that does not even understand the nitty gritty of the illness 
he/she is faced with, the only contact you have is either one of 
the child‟s parent or both of them. Effective communication is 
the key in which you must be ready to communicate correctly to 
the anxious parent of the sick child. In paediatric oncology, as 
soon as diagnosis is made, explicit explanation is rendered in 
107 
 
 
order to allow the parents of the child understand the pattern of 
care”.  
 From the findings, it could also be concluded that spirituality plays a major role in 
terminal illness. Macgans (1999) sees spirituality as religion and relationship with God which 
forms the basis of how an individual copes with illness and the management of the ailment, 
makes it important in the patients experience with terminal illness, the dying process and death. 
Bolen (1996) reported that Religion aids spiritual healing by supporting communities of faith, 
offering spiritual responses of the participants recorded a high percentages on spirituality as a 
key component of social support in terminal illness. In the same vein, Saunders (1967) described 
the characteristic of pain as loss of meaning, loss of hope, loss of identity due to lost roles and 
lack of independence, anger of God and a sense of betrayal for the patient nearing end of life, 
hence, the need to seek reconciliation and forgiveness from God. Spiritual healing can happen 
even when physical cure is not possible. 
 On the issue of companionship, a patient with terminal illness cannot care for himself 
alone, he needs help apart from health care team, the family caregiver who is a significant 
member of the patient‟s family has to be by the patient all the time, serve in the capacity of a 
helper who helps in decision-making for the patient at every stage of management. The 
multidisciplinary nature of palliative care requires that all the professional should periodically 
put heads together on how best the quality of life of the patient can be ensured. 
 In Kearney‟s (2000) submission, the potential for healing in the face of progressive 
disease is a potential rooted in the special relationship between the healer and the sufferer, this in 
itself is companionship between all those involved in the care of that terminally ill person, 
palliative care is not a stand alone phenomenon, but rather, a holistic type of care that all hands 
are on the deck to see to all aspects of care for the patient aimed at improving quality of life in 
the face of uncertainty. Morrow (2004), however, corroborated this in his assertion; described 
companionship in palliative care as a combination of the state of the art clinical competence with 
fidelity to the patient, ability to listen and to remain present in the face of much suffering and 
distress. Communication at a deeply personal level with the patient and family, palliative care 
involves having a genuine interest in the person as an individual and the ability to convey hope 
even in the face of death. 
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 Terminal illness diagnosis, as reflected in this study, can affect and limit the physical 
functioning for the patient. So rehabilitative support becomes an imperative measure to improve 
the quality of life for the patient as well as providing some comfort. In palliative care, patients 
are usually referred to the rehabilitative section of the health care facility to benefit from the 
various rehabilitative activities made available by the physiotherapists. Mueller (2001) supported 
this by confirming that there is health directorate on rehabilitative care and this also includes 
psychosocial rehabilitation, in its intervention, the rehabilitative plan helps to alleviate anxiety 
associated with the individual‟s perception of the physical incapacitation. In Okikiolu‟s opinion, 
a rehabilitation service provider includes general psychosocial counselling, 
adjustment/family/relationship counselling, parenting support, anger management, basic life 
skills training, and self help support group. This helps in maintaining effective social support for 
the terminally-ill and foster good relationship. Johnson (2001) argued that rehabilitative 
support/service during illness also incorporates teaching the patients skills that involve the use of 
their limbs to improve functioning. Such therapy includes knitting, sewing shoe, making, 
weaving baskets and the likes, being able to do some of this, serve as diversional therapy and 
improve their cognitive ability. The speech therapist also helps patients that suffer loss of speech 
from illness, in supporting the aspect of rehabilitation, the interview conducted with the 
physiotherapist revealed that: 
“Terminal illness sometimes results in physical handicapping 
condition for the patient in which mobility becomes a problem, 
consult is usually brought to physiotherapy department, to help in 
rehabilitative care for the ill patient. So far, these patients are 
regarded as „handle with care patients‟ because their care 
requires expertise, skill, and patience to be able to handle 
rehabilitative exercise for the ill patients, it is only if the patient is 
well relieved in other spheres of care that physiotherapy exercise 
can be included and I must say that the condition of the patient is 
what essentially determines the type of exercise you can do for 
him/her. Summarily for those that can withstand, some level of 
exercise, it helps them from being bed ridden and prevents 
pressure scores, some degree of mobility can be achieved”.          
 
Similarly, the study revealed that social supports (companionship, spirituality, 
counselling) and regular visitations are parts of the supportive social network. Again, Wills and 
Clark (1995) stated that: 
109 
 
 
Social supports such as companionship, regular visitation, couselling 
etc have a complex effect on, but it is calming and positive, it may 
however change one‟s assessment of the stressful event or prevent the 
ill person from engaging in damaging behavioural responses (p.41) 
 
The above findings support the literature that these intervening variables are significantly 
related to social support network among terminally-ill patients receiving palliative care. This 
study carried out a correlation analysis of companionship, spirituality, rehabilitative support and 
regular visitation with the dependent variable as shown in table 4.4c 
Table 4.4c Correlation matrix showing the relationship between social support 
(companionship spirituality, rehabilitative support and regular visitation on palliative 
care) 
 Palliative Companionship Spirituality Rehabilitative Regular 
Care Support Visitation 
Process  
Palliative Care 1     
Process 
Companionship -.066 1    
Spirituality  .334** .003 1   
Rehabilitative .308** .273** .140** 1  
Support 
Regular Care .410** -.006 .515** .176* 1 
Process 
Mean 9.4554 2.5693 6.2723 5.6040 5.7673 
SD 1.5868 0.8272 1.3045 1.0033 1.1971 
 
To also complement the results of the multiple regression and the strength of 
contributions of the components of social support in palliative care process, the correlation 
matrix in the table 4.4c showed that all the social support components positively correlated with 
palliative care with overall mean of 9.45 and standard deviation. Their relative correlations of 
1.58 with palliative care were as follows: Regular care (r=.410); spirituality (r= .334); 
rehabilitative support (r= .308) and companionship (r= -.066). 
The findings of this study revealed that regular visitation as one of the social support 
variables has the highest significant relationship on palliative care of terminally ill patients with 
coefficient value of .410**. This supports some earlier study on the relevance of regular 
visitation in terminal conditions, as communication is very vital in this unpalatable health 
110 
 
 
conditions. Sheldon (1999) found out that a greater percentage of patients would prefer to be 
informed of the diagnosis of their ailment. When this occurs, care may be in the hospital, 
hospice, palliative care centre, or the patient‟s home, whichever it is, the terminally-ill needs 
regular visitation. In this sensitive period of the ill patient‟s life, they begin to read meaning into 
the type of attitude displayed towards them both by family members and health care team. 
At this same period spiritual support becomes key as well (value .334**) so the chaplain, 
religious groups, Imams or Rabbis play important role in the life of the dying  by paying regular 
visits to them, spending time with them to know if there are discussions and unresolved or 
unfinished issues they would want  resolved or settled before the inevitable happens. So the 
spiritualist‟s visit serves as channel of hope and solution to those areas of their lives that could 
make passing away more traumatic for them. Contrary to the insignificant value of 
companionship in this study, Heltz (2000) argued that in terminal illness, emotional support to 
spouses has been linked to significant decrease in early mortality, but the ill person needs to feel 
valued and accepted, maintain confidence, and self esteem, have their feelings known, be assured 
of being remembered and also participate in decision-making activities. The hospice, being a 
facility or serene environment for caring for terminally-ill persons is like a home away from 
home, though if not assessible, same can be done in the person‟s home, whereby the terminally 
ill can be visited regularly without restriction, so as to make the patient‟s final days be as 
meaningful and pleasant as possible. 
4.5 Family integration and palliative care of the terminally-ill patients 
The contributions of family integration components to the dependent measure as raised 
by objective four which states that, assess the relationship between the components of family 
integration (financial assistance, life style modification and re-allocation of roles) and palliative 
care of terminally ill patients. The results obtained were presented in table 4.5a, 4.5b and 4.5c 
which were obtained from the data collated on null hypothesis three (H03) which states that: 
there is no significant relationship between each of the components of family integration and 
palliative care of terminally-ill patients while detailed discussion follows: 
111 
 
 
Table 4.5a Joint prediction of family integration (financial assistance, life style modification 
and re-allocation of roles) on palliative care process. 
 
Model Sum of DF Mean Square F Sig. 
squares 
Regression  234.848 3 78.283 57.142 .000 
Residual 271.251 198 1.370   
Total  506.099 201    
R  = .681 
2  
R = .464 
2  
Adj R = .456 
 
 
Table 4.5b: Relative effect of family integration (financial assistance, life style modification 
and re-allocation of roles) on palliative care process. 
 
Model Unstandardized coefficient  Standardized T Sig. 
coefficient 
Β Std. Error β   
(constant)  6.724 .459  14.652 .000 
financial assistance  .288 .028 .718 10.432 .000 
life style modification re- .197 .061 .172 3.203 .002 
allocation roles  .223 .086 .176 -2.588 .010 
 
Interpretation and discussion  
Table 4.5a shows the joint prediction on the components of family integration (financial 
assistance, life style modification and re-allocation of roles) on palliative care as used for this 
study. It showed that the effect of the independent variables on family integration (financial 
assistance, life style modification and re-allocation of roles) on palliative care was significant at 
2 2
R= .681, R = .464, Adj R = .456. 
It was shown also in the above table that the joint effect of financial assistance, life style 
2
modification and re-allocation of roles were significant (F(3,198) = 57.142; R= .681, R  = .464, 
2
Adj R = .456; P <.05). About 46.0% of the variation in palliative care process was accounted for 
by these variables. The results on table 4.4b above shows the relative contribution of each of the 
112 
 
 
independent variable on the dependent: Financial Assistance (β = .718, P<.05); life style 
modification (β = .172, P<.05) and re-allocation of roles (β= .176, P<.05). 
The result above shows that family integration components correlated significantly with 
palliative care of terminally-ill. This agrees with Olivere (1990) that no effective care can be 
carried out if the terminally-ill and the family are worrying about loss of income, he, therefore, 
warned that identifying financial needs is essential particularly with family care givers.  
Smith (1998) argued that those who have a short time to live experience loss at every level of 
life. They, therefore, need financial assistance to cope. Sherman (2000), therefore, advocated 
various forms of assistance such as financial assistance, life style modification and re-allocation 
of roles as paramount. This is confirmed through an interview session with one of the family care 
givers: 
Ever since my mother‟s illness started, I had to leave Lagos to 
come and assist in her care. I never knew what she described 
to me as a “lime sized boil” could result into her having a 
major operation done, she was counselled and I saw that she 
had a strong will and was quite positive that all would be well 
with her. I am really prepared to support and take care of her. 
When we got to the stage of her having to commence 
chemotherapy, we could afford four courses out of the eight 
courses that was prescribed for her. We then had to ask other 
significant family members for financial assistance which they 
responded within the limits of what they could afford. We are 
just trusting God for my mum‟s gratuity to be ready before we 
exhaust the funds we have presently  
 
It can, therefore, be deduced that whichever way one looks at it, the management of 
terminal conditions has financial commitment deep-rooted and since fingers are not equal, it 
usually gets to a point when financial assistance needs to be sorted, altered, family process also 
calls for reallocation of roles to be able to keep body and soul together. Again, sharing 
experience during an in-depth interview with a social worker, revealed that: 
“ My experience as social worker within the confines of these 
terminally-ill patients has been quite traumatic. This is because 
of the nature of their ailment in which they get to a point when 
they have financial constraints and usually they are referred to 
social workers for possible assistance. The fund available in 
Hospital Social Workers services is minimal compared to the 
113 
 
 
needs of these patients, but through discussions and interviews, 
with the patient/family we are able to meet their needs though in 
small measures. The units source for funds from Alanu 
foundation and well meaning individuals. The Social Workers 
even meet the patients family caregivers to discuss how best their 
financial problems can be addressed. In our department, we only 
give what the unit can afford which may not take care of all their 
needs but if funds are made available for patient‟s welfare this 
will go a long way to help them better”.  
 
The study also discovered that those who are facing terminal illness in a family 
experience change in every realm of daily life relationship, role socialization and work patterns. 
The focus of the changes according to Parreant and Fothergill (2004) differs among family 
members. To this end, Olivere (1999), therefore, warned that the family must, especially, 
identify available health insurance through which the patient can benefit care. 
On the issue of re-allocation of roles, the finding of this study reveals that the terminally-
ill usually experience changes in all realms of daily life-relationships roles, socialization and 
work patterns. But the changes differ among family members, hence Hemtza (2003) argued that 
some family members easily become exhausted. Again, Martin, Barwich and Ryles (2008) 
attested to the above that there is the need for the re-allocation of roles because the terminally-ill 
patient changes in his/her relationships with everyone they knew. This could be as a result of the 
realization that the greatest change in their life (patients) is underway and that life as they know 
it would soon be gone. 
This study, therefore, supports some earlier studies on financial assistance in the face of 
health challenges. Identifying financial needs is essential, particularly with family who have to 
deal with poverty, unemployment and poor housing. The medical social worker too can help 
source for funds from philanthropist organization or available health insurance scheme in that 
environment. Smith (1990) reported that those with short life expectancy face loss at every level, 
ranging from physical health independence career normal family life predictability, loss with its 
antecedent financial involvement which represent more than simply a crisis for the patient and 
significant others. 
  On life style modification, as one of the components of family integration in palliative 
care, this has to do with what used to be to what is now, the terminally-ill could be able to 
maintain their usual pattern for as long as their energy can carry them after which they begin to 
114 
 
 
utilise feasible alternatives. Once they realised their capacities were changing, inability to adjust 
has ended up making them angry, frustrated and worthless. Mehtza and Ezer (2003) explained 
that when the situation gets to this stage, spouses take the patient‟s physical changes in stride, 
attributed the changes to the diseases and not the patient personally, and as a result, they are well 
able to empathise with their loved ones. „Redefining‟, thus, comes into being, which is 
considering alternatives and recognising priorities as necessitated development (Andershed, 
2004). In redefining, the ill person often accept spouses‟ offer of support and they are well able 
to talk about the changes that have occurred as a result of the illness. This would help them to 
accept re allocation of roles and cooperate with the care-giver. 
 Over the years, several researchers have examined various components in palliative care 
among which are chemical components in palliative care (Kuye and Soyanwo 2007), the major 
components highlighted that necessitated re-allocation of roles include pain, weakness and 
fatigue as major concerns of the terminally-ill. Hence, their life routine needs to be redefined 
since what they could do before is no longer possible, roles have to be reallocated Ferrel (2004) 
identified funding as a limited constraint among the terminally-ill. This has been largely 
contingent in the pursuit of regular analgesics, even in the developed country, a small cancer 
research funding is made available, making effective and adequate availability of relevant drugs. 
A problem for those that cannot afford, hence life style modification and allocation of roles and 
redefining become major decisions that should be brought to limelight‟ Onyeka (2003), however, 
reports in her own findings that there is need for global awareness of palliative care in the 
developing world, especially where such services are lacking. Travel cost for patients and 
relations to access care in health facility also results in additional financial pressure (Elumelu, 
Adempehin, Aikhomo and Amanor – Boadu 2013). Gender issues in palliative care (Akeredolu 
2008) highlighted the role of women as wives and mothers in the home preventing them from 
presenting themselves early for medical attention.  
 
115 
 
 
Table 4.5c Correlation matrix showing relationship between family integration (financial 
Assistance, life style modification and reallocation of roles) on palliative care 
 
 Palliative Diversional Behavioural Counselling Emotional Educational 
Care Support Support Services Support Counselling 
Process  
Palliative Care Process 1      
Financial Assistance  .648** 1     
Life-style Modification  .316** .245** 1    
Re-allocation of Roles .316** .641** .181** 1   
Mean 9.4554 10.3861 5.0990 5.6931   
SD 1.5868 3.9524 1.3858 1.2518   
 
To complement the results of the multiple regression and the relative effect of the 
components of family integration on palliative care, the correlation matrix in the table 4.5c 
showed that there was significant relationship between the components of family integration and 
palliative care, their relative correlations with palliative care process were: financial assistance 
(r=.648), life style modification (r=.316) and reallocation of roles (r=.316).   
116 
 
 
CHAPTER FIVE 
SUMMARY, CONCLUSIONS AND RECOMMENDATIONS 
 This chapter presents the summary, conclusion and recommendations based on the 
findings of this study. The educational implications, limitations and possible areas for further 
studies are also discussed in this chapter. 
 
5.1 Summary  
 This study examined psychosocial supports and family integration as determinants of 
palliative care of the terminally-ill patients in the University College Hospital, Ibadan, Nigeria. 
To achieve this, the study was divided into five chapters.  Chapter one dealt with the introduction 
with sub-headings such as: background to the study, statement of the problem, research 
objectives, research questions, significance of the study and scope of the study. The chapter 
ended with the operational definition of relevant terms. 
Review of the related literature was extensively done in chapter two giving insight into 
previous studies as they are related to the present one. Empirical studies relevant to the study 
were also reviewed. In the same chapter, two theories were reviewed that provided theoretical 
framework. Upon appraisal of literature and formulated hypotheses, within which this study was 
hanged. 
The third chapter of the study was on research methodology. This comprises of the 
research design, population, sample and sampling technique, research instruments, validity and 
reliability of the instruments, procedure for data administration and collection of data, a pattern 
of conduct of in-depth interview (IDI) as well as procedure  of data analysis. 
Chapter four of the study provided results of the findings and their discussions. The data 
collected were coded, analysed and presented with the use of descriptive and inferential 
statistical tools. The use of mean (X ) scores for the research questions and Pearson Product 
Moment Correlation and Multiple regression for the research hypotheses. The findings of this 
study revealed that: 
Diversional support, behavioural supports, counselling services, emotional support and 
educational conselling were psychological factors that significantly correlated with palliative 
care for the terminally ill patients which was about 62% of the variation which was accounted for 
by the independent variables. The joint effect of the independent variables on psychological 
factors (diversional support, behavioural support, counselling services, emotional support and 
117 
 
 
educational counselling) on palliative care was   significant at 38.0% of the variation which was 
accounted for by the psychological independent variables. 
- Psychological variables were significantly related to palliative care. Emotional support 
had the highest value with r= .686**, followed by educational counselling with r= 
.610**, next is diversional support with r= .538**, followed by behavioural support with 
r= .500** and counselling services with r= .451**. 
- Companionship, spirituality, rehabilitative supports and regular visitations were social 
factors that significantly correlated with palliative care for the terminally ill patients 
which was about 26.0% of the variation which was accounted for by the independent 
variables. The joint effect of the independent variables (social factors) (companionship, 
spirituality, rehabilitative supports and regular visitations) on palliative care was  
significant at 74.0% of the  variation  which was accounted  for by the  social  
independent  variables. 
- Social variables were significantly related to palliative care.  Regular visitations had the 
highest value with r= .410**, followed by spirituality with r= .334**, followed by 
rehabilitative supports with r= .308** and companionship with r= .066** 
- Financial assistance, life-style modification, and re-allocation of roles were family 
integration factors that correlated significantly with palliative care which was about 
54.0% of the variation accounted for by the independent variables. The joint effect of the 
independent variables-family integration (financial assistance, life-style modification, and 
re-allocation of roles) on palliative care was significant at 46.0% of the variation that was 
accounted for by the family integration variables. 
-  Family integration factors were significantly related to palliative care. Financial 
assistance had the highest value with r= .648**, followed by life-style modification with 
r= .316** and re-allocation of roles also with r= .316** 
- The in-depth interview conducted among  the selected health workers, social workers and 
the family care givers revealed that collaborations and supports among the earlier 
mentioned personalities enhanced palliative care services provided for the terminally ill 
patients. Also, since palliative care involves amalgamation of various roles and 
responsibilities. The interviews conducted revealed that these roles and responsibilities of 
the individuals and groups must be so coordinated to see to the less suffering and bring 
about hopes even is the face of uncertainties.  
118 
 
 
5.2 Conclusion  
 The place of palliative care for terminally-ill patients cannot be overemphasised. The 
belief that the terminally-ill would or could close life at any stage of illness becomes the basis of 
anxiety on what the outcome of illness could be. A lot of previous researches have been 
conducted on the transition from curative care to palliative care in which they have little 
knowledge about the potentially complex situation. Evidence, thus, revealed that continuity of 
care and multidisciplinary collaboration are crucial to improving the experience of the patients. 
However, the sensitivity of the illness and possible outcome have been a major concern to the 
health care team and the sufferers. 
 
5.3 Policy Implication of the study 
 There is the need to have a policy that will ensure that all persons with all forms of 
terminal or life limiting illnesses visit nearest health care facility, so as to make early diagnosis 
and selection of referral to appropriate hospital in order to assess comprehensive care. 
 Also, the psychosocial supports of the terminally ill should point towards solution for 
individual challenges in interacting with the management of the illness and the outcome. 
 Policies in palliative care practice should be periodically reviewed and be the standard of 
care right from when diagnosis is made, throughout the period of management irrespective of 
prognosis. Through this, psychological well-being of patients and family caregivers would be at 
equilibrium. Besides, in-service education on palliative care practice should be for all health 
workers in health institutions so that they would have an in-depth knowledge and function 
effectively in health centres for the effectiveness of the palliative care programme. 
 
5.4 Recommendations 
 Premised on the findings, this study, therefore recommends that; 
i. All health centres (Hospitals) should give priority attention to psychological factors 
determining palliative care for the terminally ills. 
ii. Social factors such as companionship, spirituality, rehabilitative supports and regular 
visitations are key factors towards enhancing the capacity of the terminally ills. 
Efforts should be made to encourage these factors by all the care-givers 
iii. Financial assistance, life-style modification and re-allocation of roles must be the 
concerns of the extended family members, philanthropists, and government agencies. 
119 
 
 
All these are apt towards reducing the stress of the terminally ills and his/her family 
members. Health insurance schemes should function to care for the needy. 
iv. The government should allocate more funds for the management of terminally-ill person. 
This would make them seek health care early and their financial constraints could be 
attended to. Medicines and investigations must be subsidized for the terminally-ills. 
v. For effective palliative care for the terminally ill, the government should provide vehicles 
to ease transportation for those involved so that home based care can be rendered, 
those needing hospital admissions can be brought with the vehicles provided this 
would improve their psychological well-being and families would be comforted even 
if the inevitable happens 
 
5.5 Contributions to knowledge 
 This work has brought to limelight the issue of palliative care and its relevance in the 
plight of those with terminal-illness. It has highlighted the importance of quality of life and the 
need to see both the patient and family as a unit of care because whatever happens to this patient 
would inadvertently affect the family members; 
 The study had been able to establish the fact that effective palliative care prolongs the life 
of patient who is expected to have died within a short period of time; the study had identified that 
early presentation of terminal-ill patients prolongs their life because when diagnosis is made, 
early high possibility of reduction of spread of the illness is possible. 
 The need for financial assistance has been discovered as key in crucial to for the 
terminally ill, hence life style modification, reallocation of roles, rehabilitative support with 
financial support are essential factors in good delivery of palliative care process. 
 Finally, counselling services, emotional support and spirituality supports are sensitive 
factors to be given consideration even in the face of uncertainty by all including the health 
workers, social workers and the family care-givers. 
 
5.6 Limitations to the study 
 The study covered terminally ill patients in seven selected wards and four outpatient 
clinics in University College Hospital. Financial constraint on the part of the researcher made it 
impossible for all the terminally-ill patients in all the wards to be included in the study. The 
nature of this study would, however, not allow this to happen because the unconscious 
120 
 
 
terminally-ill patients could not be included in the study. The diagnosis of the terminally-ill 
patients used for this study were limited to those with cardiac problems, end stage kidney 
diseases, neurological problems, cancer and HIV. The study would have been more extensive if 
all terminally ill conditions present in the hospital were used, but time and finances could not 
make this possible. 
There was also the issue of ethical approval from UI/UCH ethical committee, which took 
a long time as the proposal of this research protocol required a lot of scrutiny and corrections 
before ethical approval was obtained. Even after being granted the ethical approval, the 
researcher had to seek permission from the chairman medical advisory committee of the hospital 
for approval to distribute copies of the questionnaire on the wards, while letters had to be written 
to the various heads of unit for approval before questionnaires were distributed within the 
neurological wards and clinics. There was administrative bottle neck in which one of the heads 
of unit prevented the researcher from distributing questionnaires among the patients, giving 
reason that their diagnosis were personal to them and their carers. So, questionnaires were not 
allowed. Other relevant wards were used instead. 
However, regardless of the problems identified, the findings of the study are reliable and 
sustainable empirically to be generalised for all the wards and clinics of the tertiary health 
institutions within which the study was carried out. 
 
5.7 Suggestion for further studies 
 Sequel to the limitations of this study,  the researcher wishes to state that other researches  
could be carried out  further in other comprehensive  health facilities offering palliative care, and 
also, a comparative study can be carried out on palliative care of patients with terminally illness 
in Federal medical health institutions and those receiving care in the traditional-based homes.     
  
  
121 
 
 
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130 
 
 
FACULTY OF EDUCATION 
UNIVERSITY OF IBADAN, IBADAN 
QUESTIONNAIRE FOR HEALTH WORKERS 
Dear Respondents 
The attached questionnaire is basically to elicit information on Health Worker‟s 
perception on of Palliative care services of terminally-ill patients in University College Hospital, 
Ibadan. It is primarily for research purpose. All your responses will be treated with utmost 
confidentiality. 
Your cooperation is highly appreciated. 
Thanks. 
 
SECTION A: HEALTH WORKERS’ SOCIO DEMOGRAPHIC DATA 
Please tick as appropriate 
Age:     Marital Status: 
10-20  [   ]    Single  [   ] 
21-30   [   ]    Married  [   ] 
31-40  [   ]    Divorced  [   ] 
41-50  [   ]    Widowed [   ] 
50 & above [   ]   Separated  [   ]  
Sex:     Religion: 
Male    [   ]    Christian [   ] 
Female [   ]    Muslim  [   ] 
     Others  [   ] 
Occupation/Profession ___________________ 
If professional, Area of Specialty ______________ 
 
 
 
 
 
 
 
131 
 
 
SECTION B: PALLIATIVE CARE SERVICES QUESTIONNAIRE   
Please tick as appropriate: Strongly agree (SA) Agree (A) Disagree (D) Strongly disagree (SD) 
  SA A D SD 
S/N 
1 Palliative care should be the standard medical treatment for     
patients who are suffering from a terminal illness. 
2 Patients should have the right to determine their own degree of     
medical intervention. 
3 Pain at the end of life is an inevitable part of the dying process.     
4 Pain medication should be given as needed to terminally-ill     
patients.  
5 Addiction to oral morphine is not a serious issue given that     
terminally ill patients have a short time to live. 
6 Estimation of pain by a Health worker is a more valid measure of     
pain than patient self-report. 
7 Complete pain relief is a reasonable goal even when the pain is     
not caused by a terminal condition.  
8 A patient should experience discomfort prior to receiving the next     
dose of pain medications.  
9 Patients should be maintained in a pain free state.     
10 Patients have the right to determine their own degree of     
psychosocial intervention. 
11 The most appropriate person to make end of life decisions is the     
patient‟s primary care provider. 
12 I do not like talking about death and dying with patients.     
13 As a rule, terminally-ill patients prefer not to talk about death and     
dying.  
14 Spiritual care should include counselling the terminally ill     
patients.   
15 Opening discussions of end of life care should be deferred until     
there is no further effective curative treatment available. 
 
132 
 
 
 
 
FACULTY OF EDUCATION 
UNIVERSITY OF IBADAN, IBADAN 
QUESTIONNAIRE FOR PATIENTS 
Dear Respondents 
The attached questionnaire is basically to elicit information on palliative care services of 
the terminally-ill at the University College Hospital, Ibadan. It is primarily for research purpose. 
All your responses will be treated with utmost confidentiality. 
Your cooperation is highly appreciated. 
Thanks. 
 
SECTION A: PATIENT’S SOCIO DEMOGRAPHIC DATA 
Please tick as appropriate 
Age:     Marital Status: 
10-20  [   ]    Single  [   ] 
21-30 [   ]    Married  [   ] 
31-40  [   ]    Divorced  [   ] 
41-50 [   ]    Widowed [   ] 
50 & above [   ]   Separated  [   ]  
Sex:     Religion: 
Male    [   ]    Christian [   ] 
Female [   ]    Muslim  [   ] 
     Others  [   ] 
Occupation/Profession ___________________ 
Period of illness __________________________ 
 
 
 
 
 
 
133 
 
 
SECTION B:  PSYCHO-SOCIAL SUPPORT QUESTIONNAIRE 
Instruction:  For each of the following statements, kindly tick (√ ) the best appropriate.  SA 
(Strongly Agree); A (Agree); D (Disagree); SD (Strongly Disagree). 
S/N ITEMS SA A D SD 
1. There is a special person who is around when I am in need.     
2. There is a special person with whom I can share my joys and sorrows.     
3. My family really tries to help me.     
4. I get the emotional help and support I need from my family.     
5. I have a special person who is a real source of comfort to me.     
6. My friends really try to help me.     
7. I can count on my friends when things go wrong.     
8. I can talk about my problems with my family.     
9. I have friends with whom I can share my joys and sorrows.     
10. There is a special person in my life who cares about my feelings.     
11. My family is willing to help me make decisions.     
12. I can talk about my problems with my friends.     
13. I have support in what I do.     
14. I have understanding of my present condition.     
15. I have information that helps me overcome my difficulties.     
16. I can face up to my problems.     
17. I have financial problems.     
18. I feel I am a burden to my friends.     
19. I am happy about my relationship with other family members.     
20. I find peace in my place of worship.     
 
 
134 
 
 
 
 FACULTY OF EDUCATION 
UNIVERSITY OF IBADAN, IBADAN 
QUESTIONNAIRE FOR FAMILY CARE GIVERS 
Dear Respondents 
The attached questionnaire is basically to elicit information from family caregivers 
involved in care of the terminally-ill patients receiving palliative care at University College 
Hospital, Ibadan. It is primarily for research purpose. All your responses will be treated with 
utmost confidentiality. 
Your cooperation is highly appreciated. 
Thanks. 
 
SECTION A: FAMILY CAREGIVERS SOCIO DEMOGRAPHIC DATA 
Please tick as appropriate 
Age:     Marital Status: 
10-20  [   ]    Single  [   ] 
21-30  [   ]    Married  [   ] 
31-40  [   ]    Divorced  [   ] 
41-50  [   ]    Widowed [   ] 
50 & above [   ]   Separated  [   ]  
Sex:     Religion: 
Male    [   ]    Christian [   ] 
Female [   ]    Muslim  [   ] 
     Others  [   ] 
Occupation/Profession _______________________ 
Period of patients illness __________________________ 
Relationship to patient ___________________________ 
 
135 
 
 
 
SECTION B: FAMILY SUPPORT QUESTIONNAIRE  
Please tick (√)  the appropriate answer Strongly Agree (SA), Agree (A), Disagree (D), 
Strongly Disagree (SD). 
S/N ITEM SA A D SD 
In the course of caring for him/her:      
1 I have sleep pattern disturbance.     
2 Caring for him/her has been convenient for me.     
3 Caring for him/her is restrictive.     
4 His/her ailment has created alteration in the family‟s role     
performance.  
5 Caring for him/her has altered my personal plans.     
6 His/her ailment has caused some emotional disturbance.     
7 He/she exhibits altered behavioural pattern.     
8 His/her illness has caused financial constraint.     
9 Other family members have dumped his/her care to me.      
10 My financial resources are adequate to pay hospital bill.     
11 I get easily tired as a result of caring for him/her.     
12 His/her illness has caused me a feeling of resentment.     
13 I am really prepared to take care of him/her.     
14 I have heard of palliative care before.     
15 Palliative care is meant for those nearing end of life.     
16 The care positively influence his/her well-being.     
17 I prefer to care for my patient at home.     
18 I  prefer to care for him/her  in the hospital.     
 
 
 
  
 
136 
 
 
137 
 
 
138 
 
 
139 
 
 
140 
 
 
141 
 
 
142 
 
 
SUB THEMES OF IDI 
1. Perception of health Workers, Terminally-ill patients and family care givers on palliative 
care  
2. Psychological support and palliative care 
3. Family integration and palliative care 
4. Social Support and palliative care  
 
IN-DEPTH INTERVIEW GUIDE 
Patient: 
Greetings: 
 Please will like to ask some questions relating to your health and the care you receive in 
this hospital. 
1. How long have you been on admission/have been coming to this clinic? 
2. Are you comfortable with the care you receive here? 
3.  Do you consider palliative care appropriate to your present condition and what is your 
own perception on this palliative care? 
 
Family Care giver: 
1. Please can you share your experience on palliative care that your relation has been 
receiving in this hospital? 
2. In your own opinion, are you comfortable with this type of care for him/her? 
3. Are you able to cope financially with the demand of his/her management? 
 
Health Worker: 
1. How do you perceive palliative care? 
2. Why do you think it is appropriate for end of life care? 
3. Can you please tell me your experience on these patients receiving palliative care and 
their family care givers? 
143 
 
 
INFORMED CONSENT FORM 
 
UI/UCH EC Number: UI/EC/12/0236 
TITLE OF RESEARCH: Psychosocial Support and Family Integration as Determinants  
of Palliative Care of Terminally-ill Patients in University 
College Hospital, Ibadan.             
 
Dear Respondent, 
I am a postgraduate student from the Department of Adult Education in University of Ibadan. I 
am conducting research on the above title.  
The attached questionnaires are strictly for research purpose, kindly answer and tick as 
appropriate. Confidentiality is strictly ensured. 
How long will I be in this study? 
You will be in the study only for the length of time to complete the questionnaire, but this is 
completely voluntary 
What are the risks of the study. 
There are no anticipated physical risks as a result of participating in this study 
Are there any benefits to taking part in the study. 
Participating in this study would provide opportunity to create awareness that would make 
individuals and group assess the benefits provided in health care to improve the quality of life of 
those with terminal illness. 
What other options are available? 
Your participation in this study is voluntary. You may stop participating anytime, though you 
may choose not to participate at all. 
What are the costs? 
There is no cost attached  
What about confidentiality? 
The data collected are strictly for research purpose and information gathered will be treated with 
utmost confidentiality. Consent would be kept for at least five years. No name or identifying 
information would be used for this study. 
  
 
144 
 
 
Who do I call if I have questions or problems? 
If you have further questions about the study, you may call the researcher (08033567270 or Dr. 
F.A. Okanlewon (08055071838) and Prof. Deborah Egunyomi (08068052153) 
 
CONTACTS  
You have been given the telephone numbers of the study personelle conducting this study. You 
can call them anytime in the course of carrying out this study. 
 
RESPONDENT, 
The research project has been explained to me, the process has been identified and I will be 
given a signed copy of this consent form for my records. 
 
I agree to participate in this study. My participation is voluntary and I do not have to sign this 
form if I do not want to be part of this study. 
 
Signature  of Respondent__________________________ 
Date:___________________________________________ 
 
PERSON OBTAINING CONSENT  
I have explained to _________________ the nature and purpose of the study and the risks 
involved. I have answered and will answer all questions to the best of my ability. The signed 
copy of the consent will be given to the respondent. 
 
Signature of Person Obtaining Consent ________________  Date_______________    
145 
 
 
(A)  The Terminally-ills: 
 Table 4.1a: Mean scores of the perception of terminally ill patients (psychosocial support 
and family integration) on palliative care 
S/N Psycho-Social Support SD D A SA Mean S.D 
1 There is a special person who is around when I am in need 2  16 85 99 3.39 .68 
1.0% 7.9% 42.1% 49.0% 
2 There is a special person, with whom i can share my joys and 1 16 96 89 3.35 .65 
sorrows. 1.5% 7.9% 47.5% 44.1% 
3 My family really tries to help me. 2 7 112 81 3.35 .60 
1.0% 3.5% 55.4% 40.1% 
4 I find peace in my place of worship. 9 11 87 95 3.33 .77 
4.5% 5.4% 43.1% 47.0% 
5 I get the emotional help and support I need from my family.  2 11 120 69 3.27 .60 
1.0% 5.4% 59.4% 34.2% 
6 I can talk about my problems with my family.  4 12 115 71 3.25 .65 
2.0% 5.9% 56.9% 35.1% 
7 I have a special person who is a real source of comfort to me. 3 21 103 75 3.24 .69 
1.5% 10.4% 51.0% 37.1% 
8 There is a special person who is a real source of comfort to me. 5. 15 108 74 3.24 .70 
2.5% 7.4% 53.5% 36.6% 
9 I have support in what I do. 7 16 127 52 3.11 .68 
3.5% 7.9% 62.9% 25.7% 
10 I am happy about my relationship with other family members. 11 24 111 56 3.05 .78 
5.4% 11.9% 55.0% 27.7% 
11 My family is willing to help me make decisions.  8 24 127 43 3.01 .70 
4.0% 11.9% 62.9% 21.3% 
12 I have understanding of my present condition.  9 42 102 49 2.95 .70 
4.5% 20.8% 50.5% 21.3% 
13 I have information that helps me overcome my difficulties.  12 54 109 27 2.75 .76 
5.9% 26.7% 54.0% 13.4% 
14 I can face my problems.  10 74 93 25 2.66 .76 
5.0% 36.6% 46.0% 12.4% 
15 I have friends with whom I can share my joy and sorrow.  19 73 86 24 2.57 .82 
9.4% 36.1% 42.6% 11.4% 
16 I have financial problems.  21 68 90 23 2.57 .83 
10.4% 33.7% 44.6% 11.4% 
17 I can talk about my problems with my friends.  17 74 95 16 2.54 .76 
8.4% 36.6% 47.0% 7.9% 
18 My friends really try to help me. 17 77 92 16 2.53 .76 
8.4% 38.1% 45.5% 7.9% 
19 I can count on my friends when things go wrong.  17 95 72 18 2.45 .77 
8.4% 47.0% 35.6% 8.9% 
20 I feel I am a burden to my friends.  37 77 71 17 2.34 .87 
18.3% 38.1% 35.1% 8.4% 
 Weighted x = 3.14 
146 
 
 
 
(B) The Family Caregivers:  
The perceptions of family caregivers on palliative care of terminally-ill patients as raised 
by objective 5 which examined the perceptions of the family caregivers on the palliative care. 
 
Table 4.1b: Mean scores of the perceptions of the family caregivers on palliative care  of 
the terminally ill patients  
 
S/N Family Support SD D A SA Mean S.D 
1 His/Her ailment has caused some emotional disturbance.  3 30 114 55 3.09 .69 
1.5% 14.9% 56.4% 27.2% 
2 Caring for Him/Her has altered my personal plans.  7 36 93 66 3.08 .80 
3.5% 17.8% 46.0% 32.7% 
3 His/Her ailments has created alteration in the family‟s 16 38 77 71 3.00 .93 
role performance.  7.9% 18.8% 38.1% 35.1% 
4 The care positively influences His/Her well-being.  15 23 119 45 2.96 .80 
7.9% 11.4% 58.9% 22.3% 
5 I am really prepared to take care of Him/Her. 10 32 118 42 2.95 .75 
5.0% 15.8% 58.4% 20.8% 
6 His/Her Illness has caused financial constraints.  4 54 95 49 2.94 .77 
2.0% 26.7% 47.0% 24.3% 
7 I prefer to care for Him/Her in the hospital. 25 47 55 75 2.89 1.05 
 12.4% 23.3 27.2% 37.15  
8 Caring for Him/Her is restrictive.  20 56 90 36 2.70 .88 
9.9% 27.7% 44.6% 17.8% 
9 I have sleep pattern disturbance.  34 55 81 32 2.55 .95 
16.8% 27.2% 40.1% 15.8% 
10 He/She exhibits altered behavioural pattern. 23 78 75 26 2.51 .86 
11.4% 38.6% 37.1% 12.9% 
11 I have heard of palliative care before.  37 63 73 29 2.47 .95 
18.3% 31.2% 36.1% 14.4% 
12 I get easily tired as a result of caring for Him/Her. 21 84 82 15 2.45 0.78 
10.4% 41.6% 40.6% 7.4% 
13 Caring for Him/Her has been convenient. 29 87 73 13 2.35 .80 
14.4% 43.1% 36.1% 6.4% 
14 His/Her illness has caused me a feeling of resentment.  26 91 73 12 2.35 .78 
12.9% 45.0% 36.1% 5.9% 
15 Palliative care is meant for those nearing end of life. 52 63 56 31 2.33 1.02 
25.7% 31.2% 27.7% 15.3% 
16 I prefer to care for my patient at home.  55 67 55 25 2.25 .99 
27.2% 33.2% 27.2% 12.4% 
17 Other family members have dumped His/Her care to me. 43 84 62 13 2.22 .86 
21.3% 41.6% 30.7% 6.4% 
18 My financial resources are adequate to pay hospital bill. 36 107 47 12 2.17 .79 
17.8% 53.0% 23.3% 5.9% 
 Weighted x = 3.10 
 
147 
 
 
(C) The Health Workers: 
 The perception of health workers on the palliative care as raised by research 
objective 5 of the study which examined the perception of the health workers on 
palliative care of the terminally-ill.  
 
Table 4.1c: Mean scores of the perception of Health workers on the palliative care 
for the terminally-ill patients. 
 
S/N Palliative Care Services SD D A SA Mean S.D 
1 Palliative care should be the standard medical 1 6 64 131 3.61 .58 
treatment for patients who are suffering from a .5% 3.0% 31.7% 64.9% 
terminal illness.  
2 Pain medication should be given as needed to 3 4 73 122 3.55 .63 
terminally-ill patients. 1.5% 2.0% 36.1% 60.4% 
3 Spiritual care should include counselling the 4 15 91 92 3.32 .70 
terminally-ill patients.  2.0% 7.4% 45.0% 45.5% 
4 Patients should be maintained in a pain free state.  13 13 87 89 3.25 .83 
6.4% 6.4% 43.1% 44.1% 
5 Patients should have the right to determine their 6 29 100 67 3.13 .75 
own degree of medical intervention.  3.0% 14.4% 49.5% 33.2% 
6 Patients have the right to determine their own 6 30 95 71 3.13 .77 
degree of psychosocial intervention.  3.0% 14.9% 47.0% 35.1% 
7 Complete pain relief is a reasonable goal even 12 29 103 58 3.01 .80 
when the pain is not caused by a terminal 5.9% 14.4% 51.0% 28.7% 
condition. 
8 Addiction to oral morphine is not a serious issue 17 45 94 46 2.81 .87 
given that terminally-ill patients have a short 8.4% 22.3% 46.5% 22.8% 
time to live.  
9 Opening discussions of end of life care should be 31 58. 66 47 2.61 1.00 
deferred until there is no further effective 15.3% 28.7% 32.7% 23.3% 
curative treatment available.  
10 Pain at the end of life is an inevitable part of the 44 61 65 32 2.42 .99 
dying process.  21.8% 30.2% 32.2% 15.8% 
11 As a rule, terminally-ill patients prefer not to talk 34 91 66 11 2.28 .80 
about death and dying.  16.8% 45.0% 32.7% 5.4% 
12 I do not like talking about death and dying with 41 82 65 14 2.27 .86 
patients.  20.3% 40.6% 32.2% 6.9 
13 The most appropriate person to make end of life 44 83 55 20 2.25 .90 
decisions is the patient‟s primary care provider.  21.8% 41.1% 27.2% 9.9% 
14 Estimation of pain by a Health worker is a more 57 101 33 11 2.01 .83 
valid measure of pain than patient‟s self report. 28.2% 50.0% 16.3% 5.45 
15 A patient should experience discomfort prior to 72 85 31 14 1.92 .87 
receiving the next dose of pain medication.  35.6% 42.1% 15.3% 6.9% 
  
 Weighted x = 3.21 
 
 
 
 
148 
 
 
 
 
149 
 
 
 
150 
 
 
 
151