PSYCHO-SOCIAL SUPPORTS AND FAMILY INTEGRATION AS DETERMINANTS OF PALLIATIVE CARE OF TERMINALLY-ILL PATIENTS IN UNIVERSITY COLLEGE HOSPITAL, IBADAN NIGERIA BY Y RA R B Mercy Olufunmilayo SANDA LI RM, RN, RPHN, B.Ed, M.Ed (Ibadan), FNWA CN. DA A Thesis in the Department ofA Adult Education Submitted to the Faculty of Ed uIcBation in partial fulfilment of the requiremeFnts for the Degree of DOYCT O OR OF PHILOSOPHY SI T of the ER UNIVERSITY OF IBADAN IV DeparUtmeNnt of Adult Education University of Ibadan Ibadan May, 2015 ii 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. Y AR R LIB ................................................. ...........N...... .......................... Supervisor Co-supervisor Prof. Deborah A. Egunyomi D DAr. F.A. Okanlawon Department of Adult Education A Department of Nursing University of Ibadan, Nigeria IB University of Ibadan, Nigeria OF SI TY ER NI V U ii iii 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 understanYding and encouragement, and the souls of the departed faithfuls. RA R LI B N AD A IB O F SI TY ER IV UN iii iv 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. Y I would like to acknowledge and thank a number of individuals that have suppRorted me during the period of writing this thesis. My immense gratitude goes to my Head ofA Department and supervisor Professor Deborah Egunyomi and Co-Supervisor Dr. F.A. OkaRnlawon and my mentor Dr. K.O Kester for being role models in the paths of ensuring hardI wBork and excellence. They have been my mentors whose patience, guidance and cooperatio nL in bringing this thesis to this level cannot be overemphasised. You are highly appreciated. N I am grateful to all the lecturers in the DepartmDentA of Adult Education; Prof. M.O. Akintayo, Dr. A.A Sarumi for their encouragement andA advice, Drs. P.B Abu, K.O Ojokheta and O.E Olajide for their additional supervisory supBport throughout the programme. I am also indebted to Drs. Omobola Adelore, I.A AbFion a,I T. Akanji, Olabisi Oladeji, Medinat Momoh, Stella Odiaka and C.O Omoregie forO their various forms of assistance, contributions and criticisms. You are all highly appreYciate d. My special thanks goIeTs to Dr. J.K Mojoyinola of Social Work Department for his assistance and guidance inS ensuring that this thesis was properly done. He was always ready to assist whenever I needRed clarification and explanation on this work. Dr. A. Jimoh of Guidance and Counselling isE also appreciated for his encouragement, Dr R.O. Oyelami of University of Lagos for youIrV assistance (you have been wonderful), Mr. Benson of LARIS Department, I say thank youN sir for your brotherly care and contributions to ensure orderliness in this work. I apprecUiate 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 v 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 assisYtance in the analysis of data. R My gratitude goes to all non-academic staff of the Department of AduRlt EdAucation; the secretary, Mr. Biodun Najim, Mr. Sunday; my colleagues, Mrs, C. OluwIamBotemi, Mrs. Funke Ogidan, Mrs. Biola Omokhabi, Mr. Godwin Odok, Miss Funmi Ojo anLd others. Thank you for your assistance, encouragement and spiritual support. N I thank all my family members my siblings both far aAnd near for their prayers, support and encouragement. AD I will never forget Mr Abiodun Aina and PBrofessor Gboyega Aina for ensuring relevant internet literature on the study gets to my mFail wIhenever they stumbled on any God bless you Mr. Niyi Makinde has consistently beenO of immense assistance, you will be divinely favoured. Thank you, Deaconess Olajide for Yyou r prayers, Miss. Kehinde and Ayoyinka for painstakingly typing and retyping this thesis seTveral times: (thanks for your time and patience). Oluwaseyi, OluwaSmayIowa, Oluwafemi, Folahanmi, Eniolorunda and Morounfoluwa, accept my sincere appRreciation for your understanding patience and encouragement, God bless you all. All will surEely end in praise and thanksgiving. NI V U v vi 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 UniveYrsity College Hospital, (UCH), Ibadan, Nigeria. The study adopted the survey research design. The UCH was purposively selected. PropRortionate and stratified random sampling techniques were used to select 587 respondents, Anamely, 183 health workers (50 doctors, 83 nurses, 24 physiotherapists and 26 sociaRl 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 SIcBale (r=0.67), Family Integration Scale (r=0.65) and Palliative Care Services Scale L(r=0.71). These were complemented with ten sessions of in depth interview with the hea lth workers, terminally-ill patients and family caregivers. Two research questions were anNswered and three hypotheses tested at 0.05 level of significance. Data were analysed using descriptive statistics, Pearson product moment correlation, multiple regression and contenDt anAalyses. The respondents were 218 male, and 369 female wAith 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 thIeB terminally-ill (F(12.189)= 25.25, R=.79); and jointly accounted for 62.0% of the varianceF in their palliative care. Psychosocial supports (β = .55) and family integration (β= .51) Orelatively contributed to the palliative care system. Components of psychological supports had significant positive relationship with palliative care as follows: emotional support (r=.Y69), diversional support (r=.54), behavioural support (r=.50) and counseling services (r=.45)T. Also, components of social supports had positive relationship with palliative care: regular vIisitation (r=.41), spirituality (r= .33), rehabilitative support (r= .308) and companionship (r= .066). Observed relationship among family integration factors and palliative care were: fiRnancSial 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 palliativEe care for health workers (64.0%), problem of early diagnosis (62.0%), non-availability oIf Vpain 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 modificatiNon and fear of death in the face of poor patient-health workers communication. PsychUosocial 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 vii TABLE OF CONTENTS Cover Page i Title Page ii Certification iii Dedication iv Acknowledgment v Abstract vi Y Table of Content Rvii List of Table A x List of Figure IB R xii CHAPTER ONE: INTRODUCTION L 1.1 Background to the study AN 1 1.2 Statement of the problem 4 1.3 Objectives of the study AD 5 1.4 Research questions B 6 1.5 Research Hypotheses I 6 1.6 Significance of the study OF 6 1.7 Scope of the study 7 1.8 Operational definition ofT terI Y ms 7 CHAPTER TWO: LITERSATURE REVIEW AND THEORETICAL FRAMEWORK 2.1 Palliative caEre: Rconceptualization and issues 9 2.2 PsycholVogical support and palliative care 28 2.3 DiversIional support and palliative care 31 2.4 CoNunselling services and palliative care 32 2.5 USocial 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 viii 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 R64Y 2.17 Appraisal of literature A 73 R CHAPTER THREE: METHODOLOGY B 3.1 Research design L I 76 3.2 Population of the study N 76 3.3 Sample and sampling technique 76 3.4 Instrumentation D A 77 3.5 In-depth-interview A 79 3.6 Translation of protocol to local language s I B 79 3.7 Administration of instrument F 80 3.8 Method of data analysis O 80 3.9 Ethical consideration Y 80 CHAPTER FOUR: RESUSLTIS T AND DISCUSSION OF FINDINGS 4.1 Analysis of Demographic characteristics of the respondents: 81 4.2 Test of contribRution and strength of the relationship among the corIeV var Eiables 85 CHAPUTENR 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 ix 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 14Y2 Appendix V R148 Appendix VI R A 149 Appendix VII IB 150 L AN AD F I B O ITY S VE R NIU ix x 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. 94Y Table 4.2a: Joint predictions psychological support (Diversional R99 support, Behavioral support, counseling services, emotional A support) on palliative care process of terminally ill patients. R Table 4.2b: Relative predictions of Diversional support, Behavioral IB 100 support, counseling services emotional support and L educational counseling on palliative care process. N Table 4.3a: Joint predictions of social support on palliative cAare process 102 Table 4.3b: Relative predictions of social support (compDanionship, 103 spirituality, rehabilitative support and reAgular visitation on palliative care process. IB Table 4.3c: Correlation matrix showing thFe re lationship between 105 social support (compani onOship spirituality, rehabilitative support and regular vYisitation on palliative care Table 4.4a: Joint predictionI oTf family integration (financial assistance, 106 life style moSdification and re-allocation of roles) on palliative care process. Table 4.4b: RelaEtiveR predictions of family integration (financial assistance, 106 IlVife style modification and re-allocation of roles) on palliative N care process. TableU 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 xi 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. AR Y BR LI DA N IB A F O ITY ER S IV UN xi xii 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 Y Figure 4.4: Bar Chart showing the distribution of the respondents AR84 by religion. BR LI AN AD F I B O ITY ER S V UN I xii 1 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). Y In traditional African societies, including Nigeria, health and disease are not onlRy closely related, but also have religious and cultural contexts (Udoh, 2002). Among indigenAous spiritual deities in the African societies, there is a prevailing belief about humanity‟s reRlationship to the supernatural forces, which have implication for health condition of the indIiBviduals (Udoh, 2000 & 2002). For instance, it is believed that the state of terminal illness in aLn individual is caused by the anger of the gods, the actions of wicked persons, or the angeNr of the displeased ancestors. Within this context, terminal illness can be caused by natural,A supernatural and mystical factors (Boston 1984; Udoh, 2000). Natural causes are diseases Dbrought about by natural factors and invisible media (Erinosho, 1989) while the supernaturaAl causes are diseases originating from the actions of evil persons, witches and sorce reIrsB. Mystical causes are brought about by dissatisfaction of ancestors and deities (UdoFh, 2000) and they are directed against individuals, families and communities (Oke, 1980; EOrinosho, 1989). Udoh (2002) explained thaYt illnesses such as cough, scabies, small pox and epilepsy are considered to be of natural orIigTin among the Igbo people of Eastern Nigeria. The Igbo people also believe that these diseSases may be caused by invisible elements. The Yorubas of Western Nigeria believe that dRiseases such as cancer, small pox, measles, hepatitis, tuberculosis and mental illness attribEuted mostly to unnatural causes, evil persons, aggrieved deities or ancestors (Erinosho, 19I87V). As a result of these traditional beliefs, terminal illnesses are generally believed to be dueN to supernatural and mystical causes (Lucas & Hendrickse, 1990). Hence, there is the need Ufor 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 2 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 orthYodox healthcare attention provided. The conclusive outcome cannot be reversed (Balogun, 200R7). Such illness is reasonably expected to result in the death of the patient within a relativelyA short period of time. R In popular use, indicates a disease which will eventually end tLhe IliBfe of the sufferer. A patient who has such an illness may be referred to as a terminal p atient or terminally ill or simply terminal. Often, a patient is considered to be terminAallyN 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 considereAd teDrminal, 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 considere dI tBerminally ill because the best estimates of longevity were greater than six months. HowFever, this does not guarantee that the patient will not die unexpectedly early (Grealish, Loma sOney & Whiteman, 2000). The medical personnel and tYheir supportive staff do not give up and ignore or suspend the care given to the terminally illI (TCollin, 2008). The patient is therefore transitioned into palliative care. Palliative care is a spSecialised care, focused not on cure but on the pain, symptoms, stress and quality of life assRociated with serious illness (Seymour, Clark & Winslow, 2004). World Health OrganisatioEn (2002) defined palliative care as an approach which improves the quality of life of patienItsV and their families facing the problem associated with life threatening illness, through thNe prevention, and relief of suffering by means of early identification and impeccable assessUment 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 3 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 useY, the multidisciplinary team approach to the management of medical problems and theA incRlusion of patient and family as the unit of care. Salako (2009) reports that palliative cRare 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 mIorBe than prescriptions and ingestion of drugs. A synergy of healthcare professionals workin gL cohesively to ensure the physical, social, psychological and spiritual wellbeing of the patienNt is paramount. Palliative care requires a multidisciplinary approachA to be effective (Blanch, 2002; Holloway, 2003). With different integrated factors whichD can impact on the psychological and social support, as well as family integration which neAed to be incorporated in order to achieve effective palliative care services of the termina llIyB ill. Psychological supports are the different behavioural features that are carried out to Fassist and reduce the distress and agony faced by those with terminal illness. Social supp oOrt, on the other hand, is an interpersonal process that is context specific and involves exchYange of information and perception that the terminally ill is cared for and adequately reasIsuTred. The family integrated component to terminal patient care allows the patient not be Streated as an individual with problems and symptoms, but also as a family member whoseR reactions interlock with the support system (Tanchel, 2003). The family of the terminally ilEl patient is at the centre of the unit of care and their support and education are vital becauseI lVosses suffered by the patient will be experienced in parallel by the family. ThereforeN, it is important to give family members opportunities to talk as individuals as well as in groUups 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 4 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 cYancer patients in Ibadan (Elumelu, Adenipekun, Soyannwo & Boadu, 2013), and ethical Rissues in palliative care (Ogundiran, 2007) . Observably, none of these past studies had bothAered to focus on the totality of the predisposing factors of palliative care which indicatesB theR combination of psycho-social supports and family integration as determinants of effLectIive palliative care of terminally il; hence the need for this study. 1.2 Statement of the problem N Mankind has always been frightened and in awe of DdeatAh, even though it is an irreversible end of life everyone would go through. The terminallyA 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 ph yIsiBcal aspects of an individual‟s life. One major hindrance in rendering palliative care in the FNigerian environment is the taboo of speaking of an impending death. There seems to be a cOulture of “death denial” among patients, their relatives and health care professionals. WheYre death is accepted, African prefers natural prolongation of the dying process and want toI bTe at home so that they can make their peace, say farewell, and give final instructions to imSmediate relatives. As a result of this, many terminally ill keep away from medical treatmenRt for fear of hospitalisation. There is also a form of professional or cultural taboo against openE communication about death among physicians. Health care professionals, in many cases, cIeVnsor the information given to patients in an attempt to protect and prolong the news aboNut the „inevitable‟. Patients with terminal illness are not given the full picture about their dUiagnosis 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 5 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 aRnd Yoften intangible. The patient, therefore, is cared for not only as an individual but alsoA as a family member whose reaction interlocks within the support system. This, therefore, Rraises the salient question: Is palliative treatment necessary when it cannot cure the terminaIl Billness? Considering the cause-effectiveness, is it worth providing palliative care knowing (fuLlly) 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 AproNviding palliative care? It is on this basis that this study investigated the extent to whiDch psychosocial supports and family integration contribute to the palliative care of termAinally-ill patients at University College Hospital, Ibadan. IB Hence, the study is epitomised on this central issue that: Will the incorporation of the independent variables of diversional suOppoFrt, counselling services, spirituality, rehabilitative supports, financial assistance and liYfe s tyle modification help in improving the palliative care of the terminally ill? 1.3 Objectives of the StudIyT The objectives Rof thSe study were to: 1) determine tEhe perception of health workers, patients and family care givers on the effectiIveVness of palliative care services; 2) deNtermine the extent to which psychosocial support and family integration affect to Upalliative 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 6 5) assess the relationship between the components of family integration (financial assistance, physical care, life style modification) and palliative care of the patients. 1.6 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 palliYative care services of the terminally ill patients in UCH? R A 1.5 Research hypotheses R Ho1: There is no significant relationship between the components ofI Bdiversional support, counselling services and palliative care of terminally-ill patient s Lin UCH. Ho2: There is no significant relationship between the compNonents of social support and palliative care of the terminally-ill patients. A Ho3: There is no significant relationship between thAe cDomponents of family integration and palliative care of the terminally-ill patients. IB 1.6 Significance of the study F For individuals and health care aOuthorities, this study would provide the opportunity to create awareness about health and Yillness, including the inevitability of death. The inclusion of death and dying education in thIeT educational curriculum would be highly beneficial. Palliative care impSroves the quality of life of the terminally ill and also provides opportunity for the patRient to benefit from holistic care. So, the study would add value to adult educational researcEh and the society at large in the area of gerontology as the underlying psychosocial IsuVpport that surrounds palliative care would be brought to the forefront in order to forge a beNtter strategy for the care of those with terminal or life threatening disease condition. UPolicy 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 7 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 weekYs of presentation. The terminally-ill patients were drawn from different wards within the URniversity College Hospital which were; Radiotherapy Ward and Clinic, South West FourR, EaAst 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 LareI nBot on admission but come on outpatient basis for treatment. The choice of UCH for the study was occasioned by itNs position as a tertiary health institution with different areas of specialty. The radiotherapy Award and clinic attend to patients with malignant diseases. The palliative care of this gArouDp of patients is complimented by the Centre for Palliative Care Nigeria (CPCN) whichB is the first palliative care centre situated in Nigeria. Patients do visit the centre at regu laIr intervals from their respective homes for psychosocial and spiritual wellbeing. F O 1.8 Operational Definition of TYerms  Counselling Services: ThIisT is the professional advice given to the patients with Terminal illness and their familyS caregivers.  Diversional SuppRort: The support encompasses all forms of activities that can shift the attention ofV theE patients from their distress of diagnosis to other therapies that would relieve their discoImfort.  FamilNy integration: It is the involvement and participation of the patient‟s family in his or heUr 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 8  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 illneYss. It involves all activities that would help the person‟s physical health, psychological wRellbeing, adequate level of independence and meaningful life. A  Social support: The sum total of all the assistance from significant othRers that help an individual faced with terminal illness to make him/her function maLximIaBlly and be part of a supportive social network. Such components include companions hip, rehabilitative support, spirituality and regular visitations. N  Spiritual Wellbeing: This deals with all the religious Aaspects of the patients‟ aimed at raising their hope and increase their faith in the trying pDeriod of illness.  Patients: These are sick people that have beIenB di Aagnosed to have terminal conditions after confirmatory investigations have been done. O F SI TY R VE UN I 8 9 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 Y  Social support and palliative care R  Spirituality and palliative care A  Rehabilitative support and palliative care BR  Family integration in Palliative care LI  Financial assistance and palliative care  Physical care and palliative care N  Centre For palliative care Nigeria DA  Empirical studies A  Theoretical framework of the study IB  Appraisal of literature  Hypotheses F O 2.1 Palliative care: concepItualYisation and issues Palliative care (froSm La Ttin „palliare‟ to cloak) is a specialized area of healthcare that focuses on relieving aRnd preventing the suffering of patients. Unlike hospice care, palliative medicine is appropEriate for patients in all disease stages, including those undergoing treatment for curable illInVesses and those living with chronic diseases, as well as patients who are nearing the end oNf life (Morgan, 2000). Palliative medicine utilizes a multidisciplinary approach to patient care relying on input from physicians, pharmacists, nurses, chaplains, social workers, psychUologists, 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 10 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).Y The focus on a patient's quality of life has increased greatly during the past twenty yearRs. In the United States today, 55% of hospitals with more than 100 beds offer a palliative-cAare program (Joanne, 2004). A relatively recent development is the concept of a dedicated Rhealth care team that is entirely geared towards palliative treatment: a palliative-care teaImB. Palliative care is provided by a team of doctors, nurses, and other specialists who wor kL together with a patient's other doctors to provide an extra layer of support. It is appropriateN at any age and at any stage in a serious illness and can be provided along with curative treAatment (Hill, 2007). Non-hospice palliative care is appropriate for anyone with a seriousD, complex illness, whether they are expected to recover fully, to live with chronic illnesAs for an extended time, or to experience disease progression. In contrast, hospice care is alIsoB palliative, the term „hospice‟ applies to care given to patients with a prognosis of six monFths or less to live (Jeffrey, 2003). WHO (2002) defined palliative Ocare as an approach that improves the quality of life of patients facing the problems associYated with life threatening illnesses and their families through prevention and relief of sufferiInTg by early identification, and relief of pain and other problems be it physical, psychological Sor spiritual. However, the goal of palliative care is to promote the quality of life across tRhe illness trajectory through the relief of suffering, including care of the dying and bereavemEent follow-up, Coyle (2002:579) reported the exact words of a palliative care patient: IV UN 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 11 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 combinYation of state of the art clinical competence with fidelity to the patient, the ability to AlisteRn and to remain present in the face of much suffering and distress and communicatRion 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 fLaceI oBf death. In the view of Coyle (2002), specialised education and training as well as mentor ing by seasoned palliative care team is recognised as a needed foundation for palliative cAare Nand hospice care, without such training, health carers inevitably find themselves in situatDions where they are unable to provide necessary symptom control and amelioration of suffering for those living with advanced progressive disease and those near death. A There is a particular thought that someti mIeBs run through the minds of health care givers which is their inability to adequately care foFr the terminally-ill due to ignorance, this experience is as true today as it was several decad esO earlier, it is rather impossible for any health care giver to practise what they do not knowY, and it‟s usually traumatic if this thought haunts somebody after the ill person has died. HIoTwever, when under the care of a skilled palliative care personnel, patients and their familieSs struggling to live in the face of progressive, symptomatic and debilitating disease canR be well cared for and supported through this process, and find meaning and peace even inE the face of death. This is the essence of skilled palliative care giver-to facilitate theI V“caring” process through a combination of science, presence, openness, compassioNn, mindful attention to detail and team work (Brazil, Howell & Bedard, 2005) UIn 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 12 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 Yadult palliative care. Palliative care for children is defined as the active, total care of the cAhilRd‟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 aBt theR disease, (WHO 1998). Effective palliative care for children also requires a broad multidiscIiplinary approach that includes the family and makes use of available community resource s Lthat can be successfully implemented even if resources are limited, It can be providNed in tertiary care facilities, community health centres and even in the children‟s home. A Morrow (2011) explained that palliative care iAs a Dspecialised form of care that aims to enhance the quality of life of patients and their famBilies who are faced with serious debilitating illness, it focuses on increasing comfort thr ouIgh prevention and treatment of distressing symptoms, it also focuses on clear communFication, advance planning and coordination of care. She further stressed that palliative ca reO encompasses the whole self, caring for the physical, emotional and spiritual needs of pYatients and their families, the goal is to prevent and relieve these symptoms, thus improviIngT his/her quality of life. Traditional palliative care can be offered anytime in the course of anS illness, but ideally should begin at the time of diagnosis. Morrow (2011)R went on to say that it is a common practice to have different doctors treating separate coEnditions like endocrinologist treating diabetes by managing blood sugar, the cardiologists ImVanaging heart disease, nephrologists managing kidney disease. A palliative care physician Noften acts as the conductor orchestrating the care between several specialist to produce care tUhat 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 13 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 comYes to achieving the best quality of life for persons with advanced illness. Palliative care is an Rapproach to health care that focuses on the relief of suffering end of life, seek relief from paiAn, a sense of control, to relieve family burdens and to strengthen relationships with lovedB oneRs, palliative care involves the persons with advanced illness. their family members, in additIion to the physician, a nurse, a chaplain, a pharmacist, a social worker, and other approp riLate disciplines in group meetings. N The goal is to involve the family in discussions reDgardAing the patient‟s desires; this may include life prolonging therapy or comfort measures tAhat 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 whe nI aBll options have been exhausted. There is little consideration given to other options like pallFiative care; this is partly because palliative care is a relatively new concept and also becaus e Othe families and the person with advanced illness do not want to be seen as giving up. It iYs, therefore, important to note that a discussion with family members is an obvious decisiIoTn. Open communication, thus, allows families to become more informed about options forS persons with advanced illness. Family members and individuals were thereby encouraged to Rtake advantage of this important educational benefit in order to make the best decision for thEemselves or a family member in need of help. An obvious complicating factor is that individIuVals and families hesitate to discuss end of life care because they usually don‟t know whaNt to say or how to discuss the subject (Tanchel, 2003. U 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 14 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 requiremeYnt of denying life prolonging therapies were barriers that deprived many individuals of the bRenefit of such care. The palliative care model evolved from the traditional hospice perspectivAe to address quality of life concerns for those patients living for prolonged periods witRh a progressive debilitating disease. It recognized that such factors required skilled and coImBpassionate palliative care interventions, regardless of prognosis, life prolonging therapy or clLoseness to death (Ashby, Kissane & Beadle, 1996). Palliative care began in the hospice movNement and is now widely used outside of traditional hospice care. Hospices were originallDy plaAces 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 modernB hoAspice which is a relatively recent concept that originated and gained momentum in thIe United Kingdom after the founding of St. Christopher's Hospice in 1967 was foundedF by Dame Cicely Saunders, widely regarded as the founder of the modern hospice movem eOnt (Cruciatti & Mont, 1995). African hospices provide supportive interventions to their sYtaff, who are exposed to large-scale loss of patients in the HIV/AIDS epidemic (GrahamIsTtown, 2002). The hospice programme at Selian Hospital in Arusha, Tanzania, was beSgun without resources beyond existing hospital staff and facilities (Hartwig, 2001). In UgRanda, Little Hospice Hoima was initiated as a demonstration project of an affordable service Eat the village level, and Mobile Hospice, Mbarara, offers mobile-home palliative suppIoVrt through roadside clinics (Hospice Africa Uganda, 2003). FrNom 2005 to date, 23-27 million cases were recorded in sub-Saharan Africa leading to 2.5 mUillion 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 15 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. Y In recognition of the changing trajectory of dying, World Health OrganizAatioRn (WHO 2008) modified its definition of palliative care as an approach to care which imRproves quality of life of patients and their families facing life threatening illness, throuBgh the prevention, assessment and treatment of pain and other physical, psychologic alL anId spiritual problems (Morrow, 2011). The new WHO definition broadens the scope of Npalliative care beyond end-of-life care and suggests that such an approach can be integratedA with life prolonging therapy and should be enhanced as death draws near. The focus of all Dthese efforts is to change the standard practice of palliative care in which there is a distinct seAparation between diagnosis, treatment and end of life care to a vision of the future in whIicBh there is an appropriate palliative care, for example, at the time of cancer diagnosis andF ini tiation of treatment, the patient would also have access to psychological counselling nutrOitional services, pain management fatigue management and cancer rehabilitation. AccordYing to Cassell (2000), labelling a patient as dying has implication at both individual Tand social levels. The patient and his/her care may become disengaged, which undermSineIs the potential for growth. The nature of palliative care and the approach of its interdRisciplinary team are dependent on the needs of the patients and the resources availableE. 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. ThNe teIrm V quality of life is used to evaluate the general well-being of individuals and societUies; 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 16 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 wYishes of that particular individual. It should, however, be borne in mind that the AindRividual‟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, functionaRl, emotional and social well-being of the person. Quality of life measures the differenLce IbBetween the person‟s hopes and expectations against their present position with respe ct to current experiences (Calman, 1984). He explained further that quality of life is notA onlNy about the individual, but the caregiver as well. Caring for an individual may place a heDavy responsibility on the shoulders of the carer, thus possibly maintaining the quality of life oAf one individual at the expense of another. The commonly identified components of quality oBf life according to Calman (1984) and Frank (2001), includes physical component which e ntIails pain control and symptom management, functional ability that deals with activities Fof daily living; activity, tolerance, family support emotional stability and spirituality, wh icOh means different things to different people. Satisfaction of treatment interventions are neceYssary and should be what the individual wants, future plans, hopes and wishes, cultural beliIeTfs, perception of body image, sexuality and financial concerns. Quality of life mayS be assessed using a variety of measurement tools. The medical quality of life tools tend to Rmeasure the presence or absence of symptoms and side effects from treatment. Disease Especific tools usually measure physical, psychological and social dimensions of a person‟s qIuVality of life (Herth, 1990). Whilst this is very important, it should not be assumed that the abNsence of an unpleasant symptom will mean that the person will perceive their quality of lifeU 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 17 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 attempYts at curative treatment could be harmful, or may provide another few weeks or months of lifeR (though patient may be very ill to enjoy that lease of life) and hope for full recovery gone, Athe hope for quality of life prevails if the ill person is receiving palliation in hospice orB at hRome with loved ones as well as hope for a dignified pain free death (Quality of Life, 2004). I When patients are given the devastating news that they ha vLe a terminal illness, the question that comes to mind is whether they would suffer, and thisN often becomes the elephant in the room. The patient may not want to ask question because ofA their fear that no one will be able to answer “No” with any level of assurance. UnfortunAatelDy, this may be true – not because of a lack of care, but because so little is known about tBhe age-old human experience, to prevent and relieve suffering, which are important goals in h eaIlth care (Cassel, 1998; Wright, 2005). Without precision and comprehensiveness, accuratelyF measuring suffering, identifying the most important correlates of suffering, predicting wh oO is at the highest risk of experiencing it, and testing interventions to relieve it, will conYtinue to elude us. Cassel (1998) suggests that these problems can be tied to the reductive mITethods of gaps. There are some common themes among these definitions. Most often lisSted are feelings of isolation, presence of unrelieved symptoms and inability to completelyR capture the experience in everyday language. In the submEission of Barnes, and Nortender (2000), findings from several small studies of terminally ill IpaVtients have demonstrated that the prevalence and severity of suffering tend to be high and N as noted by Kupelomaki (1998), physical symptoms are often present, but what is so dauntiUng 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 18 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 psychologicalY state rather than helplessness in the face of threat. In addition to defining suffering, this deRscription provides an understanding of how factors other than physical symptoms can cAontribute to suffering. Psychological symptoms (e.g depression) and existential distressB (e.gR concerns about death) also are sources of suffering since they too, can be experienced Las Iunpleasant, can occur on a frequent or chronic basis and can be perceived as uncontrollab le (Cassel 1992; Cherny, Coyle & Folye, 1998; Doyle, 2000). N Pain is defined as an unpleasant and emotional expAerience associated with actual or potential tissue damage (International Association forA theD Study of Pain, 2004). The Dorland medical dictionary (2002) defines pain as a sensatBion of discomfort, distress or agony resulting from stimulation of specialised nerve endings. IOut of the various symptoms experienced by patients with terminal illness and end of lifFe, pain is one of the commonest and most feared (Paice 2004). Chronic conditions or te rmOinal diseases that cause severe pain can be difficult to manage both medically and psychoYlogically. These painful diseases cause a reduced quality of life for the patient and familyI mTembers (Halloween, 2008). Pain can interfere with a person‟s ability to do daily activitieSs, and essentially enjoy their lives. Palliative care has shown progress in effectively dealing Rwith these types of pain (Koerein, 2004). In the past, palliative care was used for symptom Eand pain management for the patient; over the last few years, it has grown to be very helpfIuVl with the pain and symptoms management of chronic illness. The programme involves nNurses, physicians and social workers that are all specialised within this field. These profesUsionals 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 19 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. WithYout a thorough and accurate assessment, the physician and medical staff will not be able to prRovide the correct pharmacological relief for the patient. Palliative care helps patients with seAvere pain by utilising different pain medications with varying strengths to achieve a rounRd the clock pain management (Paice, 2003). IB Terminal illness by itself brings about pain to the sufferer; buLt contrary to general or common belief, pain is not an inevitable part of end of life healNth conditions, much suffering undergone by patients with terminal illness can be prevented bAecause there are drugs to provide relief. The final goal is to make the patient pain free whiDle maintaining good quality of life as much as possible. The drugs should provide relief for pAatients and, thus, allow the incurable ill to die with dignity (Akinkoye, 2007). The heal thI Bcare providers are critical members of the palliative care team, particularly in providingF pain management. This begins with assessment and continues through the development of aO care plan and implementation, the team also provides education and counselling to the paYtients and their families, thereby making them responsible for developing institutional policiIesT and monitoring outcomes, to provide optimal pain control, all health care professionals, Smust understand the frequency of pain at the end of life, the barriers that prevent good pain Rmanagement and the treatment used to provide relief. 2.1.1 Barriers toE pain relief: Barriers to good pain relief are numerous and it is due to lack of education, miIscVonceptions or attitudinal issues. These barriers contribute to the large number of patients wNho do not get adequate pain relief (Baker, 2000). A careful examination of these barrieUrs 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 20 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 settingsY lack qualified professionals that have knowledge of pain management. The cost of these drRugs may also be an issue (i.e affordability). At the end of life, patient may need to rely on famAily members or other support person to dispense medication, Paice (2004) discovered thRat there is little concordance between the patients and family members. The interdisciplinIaBry team in palliative care is essential in providing explanation of the meaning of pain, its poLssible barriers and good relief. (Clerridge & Cassey, 1998). N 2.1.2 Pain in children: The definition of pain recogniseDs thAat 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 typBes; Ait can be classified according to duration which may be sudden, persistent, „off‟ and „on‟ , Imay be associated with physical manifestation. All these ultimately affects quality of life, sFocial activity and personal relationship. Pain could also be associated with mood change s Oand depression (Paice, 2004). Children are unable to express themselves as adults wouldY. So the palliative care provider should be able to assess them properly- basic tools for asseIsTsing them include facial expression, body movement and cry. Brown (2007) emphasisedS that the assessment of pain should not be generalised but rather individualized as no twRo persons can be the same and the reaction to pain differs, it should also be borne in mind thEat improper assessment and its management will have negative impact on the patient‟s life. IV WNorld Health Organization (1998) defined pain ladder as a simple effective ladder for escalaUtion 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 21 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 provideYd. In many developing countries like Nigeria, the prevalence of pain at the time of terminRal illness diagnosis is between fifty percent and seventy-five percent. A terminal cancer patAient study in Kenya and UK found that African‟s main concerns was for pain control BandR analgesic drugs while for those in developed country, the major concerns was emotional pIain (Harding, Powell, Downing & Connor, 2008). Uganda is the only third African cou nLtry that made morphine available and affordable to its patients population (Spance, MerrimNan & Binagwaho, 2004). The several challenges facing effective pain relief is similar in oAther developing nations and this includes drugs availability, lack of referral, fears of misuseD, under prescription and lack of public awareness. Cultural and religious beliefs may also BconsAtitute barrier (Soyanwo, 2004). Morphine given in increasing amount is safe for the patien tI‟s in pain and should be administered until the pain is relieved without producing an overdoFse as long as the side effects are tolerable. The ideal dose is the one that relieves the pain. O Non-drug therapies, includiYng cognitive behavioural techniques and physical measures can serve as adjunct to analgIesTics in palliative care setting, though this is not suggesting that when these therapies workS, the pain is of psychological origin. Benzeni (2008) reaffirmed that the patients and caregivRers abilities to participate must be considered when selecting any of these therapies. This incEludes their fatigue level, interest, cognitive and other factors. Cognitive behavioural thIeVrapies include strategies to improve coping and relaxation. Other aspects of non- pharmacoNlogic measure include education, exercise, coaching, coping music, etc. These have been fUound 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). 21 22 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 palliYative care practice, improved communication enhances the patient‟s psychosocial adRjustment, decision-making, adherence to treatment, satisfaction with care improved patient uAnderstanding and trust. For the palliative care giver, good training in effective communicationR would improve clinical skills, reduce the high level of stress reported by professionals, reduIcBe burn out, litigation and improve satisfaction. L Communication is an essential element in all areas of lifeN and is more important while dealing with sick people. There is a great need for effective cAommunication while caring from the terminally-ill patient, the family members and caregivDers. Good communication in terminal care is believed to enhance the quality of remainiBng Alife of a terminally-ill patient and his/her family (Ajayi, 2007). The work of palliative ca reI is based on a relationship with patients, their families, professional team and others. PoFor communication on the other hand, makes life difficult for a patient and his family /Ocaregivers. It creates a sense of rejection, confusion, misunderstanding and despair. Y There is quite a numbeIr Tof published literatures on the emotional and psychosocial needs of the dying patient, andS the importance of communication as a major component of the palliative care deliveryR (Doyle & Hanks, 1988; Kaplan, Greenfield & Ware, 2001). On the other hand, there is lesEs literature on practical assistance for the palliative care practitioner in improving hisI oVr her communication skills (Maguire, 1985). It is evident that in our society, any conversatiNon about death and dying is awkward and different. More so, between the health practiUtioner 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 23 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. Y 2.1.4 Touching: Touch may be helpful during communication, especially if a nonA- thRreatening area is touched e.g hand or forearm. This makes the patient feel comfortableR 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 uncomLfoIrtBable, the health care professional should stop (Older, 1984). Before commencing communication, the palliative care Nprofessional should introduce himself/herself to the patient and let him/her know his/her Aprofession and intention. During dialogue, the health care provider should be attentive andD show the patient he is listening and attentive. The listening skills and techniques include oApen questions (How are you? facilitating pausing or silence when patient speaks, noddin gI, Bsmiling or telling the patient to tell me more about that”) clarifying and handling time andF interruptions. 2.1.5 Empathic Response: The natu rOe of palliative care and the outcome of terminal illness calls for empathy in which case theY palliative care givers have to be knowledgeable in handling this type of situation. In empatIhTic response, the health care giver does not have to feel sad at the same time that the patientS feels sad. This should simply be a technique of acknowledgement, showing the patient thaRt you have observed the emotion he is experiencing. The objective of the empathic response Eis to demonstrate that the palliative care givers acknowledge what the patient is experiencinIgV. If this is not acknowledged, it renders the rest of the interaction useless (Brooks & Heath, N1985). UThe 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 24 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 Ynot a new phenomenon, rituals and practices marked the change from savagery to barbRarism as humans began to illustrate a concern for the dead (Payne 2000). Gender, age and cuAlture can all have different effects on how an individual copes with grief (Jacob 1993; PeRnson, 2002). By considering these factors and developing an increased knowledge aInBd understanding of bereavement, healthcare professionals can identify individuals who m ayL be at risk of developing complications at an early stage. N Palliative care philosophy has emphasised support Dfor Athe bereaved as not less important than its other contributions to healthcare in pain andA symptom management, home care and family support (Parkes, 1993). Most palliative care teams allocate specific resources of bereavement risk assessment, early intervent ioInB, and continued monitoring of individuals exposed to loss of loved ones through termiFnal illness. Palliative Care Australia has established the maintenance of a bereavement serv icOe as a core component of comprehensive palliative care (Palliative Care Australia, 1999). InY contemporary society, bereavement, most commonly, refers to the death of a significant pIerTson. Bereavement can be expressed in culturally various acts of mourning, for example; fSuneral ceremonies, or ritualised withdrawal from public activities. „Grieving‟ refers to thRe psychological component of bereavement, the feelings evoked by a significant loss, esEpecially the suffering entailed when a loved person dies. Sigmund Freud, (1982) viewedI Vgrieving and mourning as the processes whereby the bereaved person adjusts to the realityN of their loss, enabling them to disengage from the deceased and reinvest in new relatioUnship (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 25 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-sYocial transitions required after bereavement. These depend upon the role the deceased hadA in tRhe life of the bereaved (Parkes, 1993). Kubler-Ross (1969) models of grief and coming to terms with dReath have also predominated. She suggests five distinct phases: denial and isolaLtionI,B 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 pNhases sequentially. Potentially, a person could get „stuck‟ at any stage, impeding their moveAment to the next stage and, thus, obstructing „resolution‟ of their grieving process. D Caring for individuals and their families prior Ato and following the death of relatives or friends can be very stressful for healthcare pro feIsBsionals and can cause them to question their beliefs and attitudes. The importance of reFlationships and attachment in understanding how individuals experience bereavement wa sO further developed by Bowlby (1980) who proposed that attachments are formed early in lifYe between the child and the parents in order to feel safe and secure, and to survive. HowevIeTr, if this attachment is threatened, it can lead to intense anxiety, despair and emotional detaSchment e.g. children who had lost something special might cry, shout and have tantrums soR that it is brought back. Bowlby claimed that in adult life the same mechanism are useEd to attempt to bring back their loss (Payne, Horn & Relf, 2000). His four- phase model IoVf grief includes: shock and numbness, yearning and searching, disorganization, despair anNd reorganization. Bowlby firmly believed that if the phases of grief were worked througUh, 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 26 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 meetY with a trained facilitator to share their experiences and feelings. Members of the group find sRupport in these encounters through mutual understanding (Mckissock, 1994). MaintainingR conAtact 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 bereavIemBent worker. Parkes (1980). Regular anniversary remembrances (such as a card or phon e Lcall) from the team are considered helpful by many, gently breaking in on the difficultAy orN loneliness. The opportunity to attend memorial service, some months after the death has oDccurred, offers a focus to the hope for healing process. It is important to recognise that, along with the Asadness, anger, bewilderment and anxiety that can accompany loss, natural healing process eIs Bare often also at work to facilitate adjustment and adaptation. Separation from people andF environments that are important to an individual, occurs repeatedly throughout life. Th e Oensuing sequence of events often entails disbelief or denial, followed by intense physicaYl reactions of weeping and yearning. This may be succeeded by a time of extreme lonelinesIs Tand disturbed thought, with repeated replaying of the sad events. Only after a longer periodS will a sense of reintegration and readjustment allow the bereaved person to take up life Ragain with confidence. But there is no set or certain sequence to follow, and emotions mayE fluctuate wildly, while sometimes flaring up with an intensity of emotional pain may elonIgVate the initially promised adjustment period. (Parkes, 1980) ThNe grieving process may be complicated for certain vulnerable individuals or for any personU 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 27 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 adolesYcents and children, which requires a sensitive recognition of their special needs (HenshelwooRd, 1997; Stokes, 1999). Many palliative care workers who are experienced in bereavemAent care are concerned at the lack of bereavement support available in major healthcare insRtitutions such as teaching hospitals. In such environments, sudden death, traumatic death anIdB death in unfamiliar and isolated circumstances creates, more likely, the risk of compl icLated grief for those left behind. This deficiency is being particularly addressed in palliativeN care (Williams, 2000). Grieving is a normal response to loss, and not everyoneA needs expert intervention to help manage grief. Assessment by palliative care services Acan Dhelp determine who needs assistance and recommend appropriate responses. If consideBred appropriate, intervention should begin at the time of referral and continue through termi naIl care into the time after death. That means a focused and structured program within the dFay-to-day work of the palliative care team, calling for resources that have not always bee nO easy to access or maintain. (Aranda, 2000). Grief is an emotional state which has physicaYl and psychological dimensions, and is associated with the awareness of either imminent IoTr actual loss of a significant person (Udoh, 2000). The grief that occurs before death is geneSrally referred to as anticipatory grief. This is well demonstrated in the significant relative (sRon or daughter) of a patient with terminal illness whose death was prolonged for two Eto three years. During these periods, the son has experienced grief and had actually workIedV through his grief during the period of the patient‟s agony while awaiting the inevitableN end, so the son‟s feelings of guilt and anger had been reduced by the unrelented care he offUered 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 28 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 relationYships with others. R A 2.2 Psychological support and palliative care R Psychological support is all forms of activities carried out toI Breduce the distress associated with burden of terminal illness, including the emotional as pLect of care related to the illness. This type of support relates to the mind and involves soNme degree of mental activity which can be classified as an intellectual process (Farlex ClipaArt Collection, 2003). The National Council for hospice and specialist palliative care servicAe (1D997) 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 th e IilBlness and its consequences, communication, social functioning and relationship. The couFncil explained that psychosocial care addresses the psychological experiences of loss and fOacing deaths for the patient and their impact on those close to them. It involves spiritual Ybeliefs, culture and values of those concerned and the social factors that influence the experIieTnce. Psychological suppSort is the process of meeting a person‟s emotional, mental and spiritual needs, which Rare the essential elements of positive human development. Psychosocial support is needed bEy all in order to promote their psychological and emotional well-being as well as physical anIdV mental development (Health link Worldwide, 2006). Psychological support helps to build reNsiliency in both adult and children faced with life threatening/life limiting conditions. It supUports 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 29 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 serviceY. The interventions should include a variety of approaches such as counselling, family Rtherapy, memory work and succession planning (Isabelle, 2009). A Psychological support at the end of life is a difficult time for patienBts anRd their relations and carers. It is important that psychological care be provided to palliative Icare patients and their families in various ways through a range of medical nursing and allied Lhealth care professionals. Psychosocial support is needed for patients with terminal illness rNequiring palliative care. These illnesses include advanced cancer, end stage kidney diseDaseAs, heart failure, complicated lung disease and progressive neurological disorder (muAltiple sclerosis). WHO (2002) defines palliative care as the active total care of patient Bwhose disease is not responsive to curative treatment control of pain and other symptoms, b eI it psychological, social and spiritual. The goal of palliative care, thus, includes: F  Relief from pain and other dist reOssing symptoms.  Affirms life and regard dyinYg as a normal process.  Neither hastens nor poIstTpone death.  Integrates the psycShological and spiritual aspect of patient‟s care.  Offers a suEppoRrt system to help the family cope during the patient‟s illness and in their own beVreavement.  Uses Ia team approach to address the needs of patients and their families, including the UbeNreavement 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 30 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 combinYation with physical symptoms (Miller & Walsh, 1996; Kasser, Malt & Hagen, 1998). AmoRng many possible psychological and psychiatric complications, the most common are anxieAty disorders, depressive disorders and cognitive disorders which can be major sources of suffRering for patients and can pose significant management problems both at home and in instLitutIioBnal settings. The recognition of anxiety in the person with terminal ill ness can be challenging. Individuals who are anxious may present with a variety ofA syNmptoms, including subjective feelings of tension, apprehension and worry as well as oveDrt signs of restlessness, hyperactivity, hypervigilance, sleeplessness, tingling and numbness physical manifestations of anxiety often which overshadow psychological or cognitive onesB in Apatients with terminal or advanced illness (Holland, 1998). Anxiety can also arise from m eIdical complications of illness or uncontrolled pain. In the dying patient, anxiety also mFay reflect impending heart attack or respiratory dysfunction or dehydration. Anxiety Oin terminal illness commonly results from medical complications, other considerationsY include the contribution of anxiety to non-compliance with medical care, family and staff IreTactions to the patient‟s distress and the balance between the risk and benefits of treatment. TShe management of anxiety in terminal illness also involves the use of appropriate medicationRs (Holland & Massive, 1989). The health Ecare team relies on the presence of cognitive symptoms which includes feelings of wIoVrthlessness and hopelessness, excessive guilt and suicidal thoughts. For the professionNal to interpret feelings of hopelessness in the terminally-ill which may become an issue when Uthere 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 31 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 supYport, psychotherapy, behavioural cognitive therapies and educational therapies. The psycRhological therapies are used increasingly in palliative care, such as cognitive and behavRiourAal therapies, adapted from the terminally-ill suffering from anxiety, depression or streBss. These therapies explore the existing coping strategies and facilitate the developmenLt oIf new and effective strategies so that the patient can regain a sense of control. Guided/Im agery is another technique used to aid relaxation (Heaney, 1992), while others have used Npatient narrative to encourage reminiscence and to encourage a holistic approach by gaininAg insight into the patient‟s world. The specialist social workers in palliative care are invAolveDd in a range of intervention measures involving patients, families, carers and the local community. Ashby (2007) explained that it is helpful toI Bdifferentiate between therapies which patients believe might cure them and those that help Fthem to live comfortably with their disease. Positive thinking strategies which obstruct ap prOopriate care delivery may also need to be addressed skillfully. Psychosocial and PalliaYtive Care Program Options Moffitt Centre is committed to providing patient with comprIeThensive palliative care from the time of diagnosis of terminal illness, throughout courseS of illness to the end, the diversional support and palliative care programme consists ofR a multidisciplinary team comprising neurologists, neuropsychologists and social workers thatE can provide pain management, individual and family counselling consultation and advocacyI sVervices. The neuropsychologist conducts comprehensive evaluation of cognitive and behavNioural function using standardized tests and procedures. Regnard & Kindlen (2001) explaiUned 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 32 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 withiYn the group. Hospitalization and treatment of some terminal illness as highlighted in the submRission of Sheldon (1997) may require follow up care at home or in a rehabilitation setting likAe hospice for optimal recovery. Some form of treatment may also be given at home to reduRce the length of hospital admission. A clinical social worker and case manager work togethIeBr to ensure the plans of care throughout the treatment period with proper coordination w ithL the medical team. The social worker also helps to make arrangement for lodging in caseN the patient and family do not have an accommodation within the treatment area. ADll tAhese coordinated efforts of the multidisciplinary team will enhance diversional supporAt strategies for the terminally-ill. 2.4 Counselling services and palliative car e IB Counselling is a health advice and oFpinion. It is more than a solution to an immediate problem. Suggestions are essential f eaOtures in effective palliative care management of the terminally-ill. This actually shouldY be an integral part of care in order to help the patient and family to have up-to-date infoIrTmation about the illness and the best way to forge ahead in the face of uncertainty (BabaloSla, 2007). Counselling plays a vital role in palliative care practice as it is a confidential discRussion between the patient and their care provider. The terminally-ill requires counsellinEg on every step of his mode of management to be able to make informed choices and dIecVision related to his health. The significant family member could only be involved if the paNtient requests for such or if the person is very ill, nearing death or unable to commUunicate. 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 33 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 hYealth workers involved in the care only on a “need to know” basis. All medical records AandR registers are kept secured. Babalola (2007) explained the uniqueness of counselling during terminRal illness that it should centre around giving psychological support for the client, and shoIuBld provide culturally sensitive interventions. It requires paying attention to psychological re aLctions of client and lastly open discussion about death could be necessitated especially if thNe client is nearing end of life. The social-cultural context need to be borne in mind during cAounselling as they need to realize that culture and tradition have great impact on people‟s aDttitude, ideas about illness and death. The counsellor therefore needs to be sensitive to cuAltural differences and respect them. The following are common features to all types of coIuBnselling: the time should be appropriate and adequate for effective transfer of informatioFn and behaviour modification, counselling session should not be rushed or unnecessarily pOrolonged, but should allow for good rapport and trust. The accessibility of care should beY convenient both for the terminally -ill and other care givers. Arrangement can also be madIe Tfor home visit if such is indicated and the counsellor should be available (even through phSone numbers) the health care team should appreciate the stress caused by fear of being diaRgnosed with terminal illness, should the patient become hostile and aggressive, the careE provider should accept the consequent emotions and reactions of clients and that of their reIlaVtions. Trust is an essential element of counsellor-client relationship which is built on the undNerstanding that whatever is discussed remains confidential between them. U 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 34 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 1Y998). Attending to the social needs of the terminally-ill and those of their family is an integrRal part of caring in accordance with palliative care approach. Social care/support is specificalAly concerned with the mental and emotional well-being of the patient and their family carersR including issues of self esteem, self efficacy, insight into and adaption to the illness aInBd its consequences, communication social functioning and relationship (Dix & Glickma n,L 2002). The Council for hospice and Specialist Palliative Care (2000) emphasised the Nimportance of social care in palliative care and reported that “The social fabric of their lAives is central to how they make sense of their illness experience, the meaning they draAw uDpon to understand these and the range of resource they can call upon to help them manBage them”. In practice, the social aspects of palliative care are often limited to a focus u pIon the patient‟s family ignoring community influences. The terminally-ill may feel a senFse of loss of control, fear or anger. Their relatives too may be experiencing these emotion sO and the sad consequence is that these often cause a gap between them. Y Clark (2002) stated thaIt Tthe challenge facing palliative care is how to reconcile the high expectations of technical Sexpertise which calls for a humanistic and ethical orientation to the care. There is a concerRn to understand what best practice is, and what the experience is like for the patient, the caErer and professional. Psychosocial aspects of palliative care have to be the concern of alIl Vthe team because all the elements, comprising total pain require attention if suffering Nis to be relieved and quality of life improved. In psychosocial assessments, the health care pUrofessional 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 35 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 lossY and change, family dynamics counselling and knowledge of social policy and resource. R It is important for the social needs of the patient and carers to be assesAsed, so that appropriate levels of support and treatment can be offered. A social approBachR is a patient and family-centered approach, and is vitally important as it represents a mechaInism for retaining the holistic approach of modern palliative care. Social care can restore m Lany of the original value and vision of palliative care to a specialty threatened by incrAeasiNng medical technology. Clark (2002) opined that modern palliative care has persuaded doDctors 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 BcauAse of death, can be resisted, postponed or avoided. Advocacy is an important attribute of s oIcial support. Providers of this support serve as advocates by motivating and empoweringF recipients to act on their behalf. Reassurance, reinforcement, affirmation and encour aOgement are common advocative strategies that can be employed in an atmosphere of uncoYnditional positive regard and caring (Tichon & Sapiro 2003). The initial social support giveInT to the terminally-ill will help to improve his/her wellbeing; it boosts the immune system Sas well, thus, helps in preventing psychological depression (as a result of terminal illness). ARccording to Weber (1998), the kind of social support can be further classified into muEltiple types, namely, informational support, emotional support, appraisal support and iInVstrumental support – informing an individual of the typical course of illness provides Nsupport through information given, expressing care and affections for someone providUes 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 36 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 integraYtion. Functional support looks at the specific functions that members in this social netwRork can provide. The different types of social support have different correlations with heRalth Aand personal relationship (Cantor-Grace 2007). Bolen (1999) and Canto-Grace (2007) explained further that socIiaBl support can come from a variety of source including (though not limited) family, frien dL, romantic partner, pets, community ties and co-workers. Source of support can be natural (Ni.e. family and friends) formal (mental health specialist or community organizations DsuppAort from a romantic partner is associated with health benefit, particularly for man)A. Early familial social support has been shown to be important in children‟s ability to deveBlop social competencies and support parental relationship. I F 2.6 Spirituality and palliative car e O Spirituality is culled from Ylatin word “spiritualitas”. It can be defined as whomever or whatever gives one a transcIeTndent meaning in life. It is often expressed as religion or relationship with God, butS can also refer to other things, nature energy, force, belief in the good of all, belief in the impRortance of family and community. The spirit is the essence of the person (Puchaiski, 1999).E The spiritual part of each person can bring wholeness to the emotional, physical and IinVtellectual parts of life. One‟s beliefs and values can profoundly affect how a person coNpes with illness and with the management of illness. Hence, spirituality is important duringU 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 37  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. Y  One‟s relationship to his/her supreme being. R  May be religious or philosophical expressed or unexpressed. A  Individualised, personal, experiential and dynamic. BR  Spirituality is free and open. LI  Religion and spirituality are not the same, but are overlapping concepts.  Some people who see themselves as spiritual do not foArmaNlly endorse a religion.  Some people who are religious are not spiritual. D In palliative care, the carer should ask himself Awhat gives meaning to life. This could be friends, carer, family, nature, ant animals, mus icI, Ba higher power. Ask the patient what gives meaning to his life and also recognise whaFt gives meaning to their lives. All these meanings should be included in the plan of care. IOn illness, a lot of questions come to mind which include why is this happening to me? HowY wi ll 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 exIprTession of patient grief. Saunders (1967), thSe founder of the hospice movement describes the intense suffering by dying patients and EtheiRr family members as “total pain”, including physical, social, psychological and spiritual pIaVin (all are interactive). Spiritual pain, thus includes, loss of meaning, loss of hope, loss of idNentity due to lost roles, lost activity and lost independence, anger of God, sense of betrayUal, 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 38 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 andY this entails referring to the hospital chaplain, the hospice chaplain, the patient‟s parisRh priest, minister, Rabbi or Imam (Weissman, 2007). A Religion and spirituality are among the most important cultural factors thRat give structure and meaning to human values, behaviour and experiences (Lukoff, Lu L& TIuBrners, 1995 as cited by Mueller Plevak & Rummans, 2001 ). For patients at end of li fe, spiritual and religious concerns may be stirred, or made stronger, they may questionA theNir faith or examine it more in depth. Puchaiski (2007) opined that spirituality is importanDt during all phases of one‟s health and illness, but spiritual and religious factors play an especAially 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 th eI pBatient matters, innocence is lost, vulnerability becomes inevitable and the person is no lonFger who he was before the onset of illness and will never be the same”. According to Amb uOel (2001), during times of illness and crisis, people may find that their spiritual needs increYase, the terminally-ill patients and their families get strength and hope from spirituality, wIhTich is an ongoing issue – a part of the patient‟s journey not, something to be addressedS at the last minute. Paying attention to spiritual needs can contribute to an increased quality ofR life (Bolen, 1996). Reviewing the aspect of religion, its features were as follows: E  ReligIioVn derived from the word “religion” meaning to bind together.  MNore structured belief system that addresses universal spiritual questions. U 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 39 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 lauYndry, paying bills etc). The illness may render the patient unable to perform previous sociAal rRoles 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 whoB expRerience terminal illness. Hope is intimately bound with loss and suffering. As Marcel (199I8) observed, “hope is situated within the framework of the trial”. It is the paradox that man iLfests itself so fully at the end of life. In the view of Ersek and Cotter (1999) the critical AroleN that hope plays in human life takes on special meaning as death nears. The ability to Dhope 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 experienceB mAultiple losses as they continue an illness trajectory that is marked by increasing disability aInd pain. Even when hope appears to be strong within the dying person, it can be probleFmatic. Hopefulness is perceived to be based on unrealistic ideas about the future. Impo rtOant issues may be left unresolved as individuals continue to deny the reality of impending Ydeath. Hope is an important concept for many disciplines including philosophy, theologIyT, psychology nursing and medicine (Farran, Herth & Popovich 1995). S Dufault (2001)R also theorised that hope has two interrelated spheres, particularized and generalized. ParticEularized hope is centred and depended on specific, valued goals or hope objects. An eIxaVmple is the hope of a terminally-ill patient to live long enough to celebrate a particular Nevent. In contrast, generalized hope is a broader, non-specific sense of a more positive futureU 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 40 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 reliYgious beliefs and rituals but extend to broader conceptualization of spirituality that encompassR meaning and purpose in life. Serious illness and suffering can challenge one‟s belief anAd trust in a benevolent deity or be viewed as punishment from God, either interpretatBion Rof suffering can result in hopelessness. Relationships with significant others is another imIportant dimension of hope. Hope levels are positively associated with social support (Johnso nL & Harris, 2001; Ebright, 2002) reported that the HIV peer-counselling relationship inspiNred hope, despite being vital sources of hope, others can threaten the terminally-ill byD disAtancing themselves from him/her showing disrespect, regarding the patient‟s experieAnce, disclosing negative information or withholding information. The cognitive dimension of hope enco mIpBass many intellectual strategies particularly those involving specific goals that require plFanning and effort to attain. If one repeatedly fails to attain valued goals, hopelessness and pOassivity can result. The behavioural hope is strongly associated with coping. Hope hasY been identified as a foundation or mediator for successful coping. Activities that foster hIoTpe are similar to the problem focused coping strategies originally described by Lazarus and Sfolkman (1984). Strategies to maintain hope include problem-focused coping method (e.g setRting goals actively and getting one‟s affairs in order) and emotion focused strategies i.e usinEg distraction techniques, appraising the illness in non-threatening ways. Contextual dimIVensions of hope, however, are life circumstances and abilities that influence hope. This incluNdes physical health, financial stability, functional and cognitive abilities. Common threatU 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 41 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 controlY of a situation, and were less concerned about assessing how realistic their particular hopesR were. In contrast, adults actively assessed the realities of the present and possibilities foAr the future. Artinian (1984) explored hope in older children, aged 10 to 20 years, who Runderwent bone marrow transplantation. The finding suggested that ways to reduce stress aInBd instil hope among younger patient and their parents include managing physical discomf oLrts, making children and parents feel cared for, being non-judgemental when children aAnd Nparents vent anger, preventing boredom, and assisting with making and altering plans. AD programme of research by Hinds and colloquies (1999) elucidated the experience of hoping iAn adolescent. Hinds defined adolescent hopefulness as Bpossessing a comforting or life-sustaining, reality-based belief that a positive future exists f oIr self and others. Interestingly, the inclusion of the phrase “and others” arose from the sampFle of adolescent cancer patients. He found that only in this sample did adolescent express a cOoncern and articulate their hopes for others. Examples of this attribute included such hopes aYs “My parent will be O.K if I die,” and “There will be a cure soon so patient „X‟ will not dIieT”. This ability to go beyond oneself and hope for others may be influenced by the adolescSents‟ sense of mortality that accompanies the diagnosis of terminal illness. Despite the streRss of life-threatening illness, many adolescents are able to remain hopeful. Ritchie (2010) exaEmined hopefulness and self-esteem in 45 adolescents with cancer. She found that the averaIgVe hopefulness and self-esteem scores for her sample were as high as those for healthy aNdolescents. Moreover, high self-esteem was an important predictor of hopefulness. TheseU 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 42 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 dimYinish hope, the dying process does not inevitably bring despair. The human spirit, manifResting its creativity and resiliency, can forge new and deeper hopes at the roles in supportingA patient and families by providing expert physical and spiritual care. Fostering hope is a prRimary means by which palliative care givers accompany patients and families on the jLourInBey through terminal illness (Ebright & Lyon, 2002). N 2.7 Rehabilitative support and palliative care A Rehabilitative service provide complete patient rehDabilitation following an illness, injury or surgery with the aim of helping patients and their caArers achieve maximum potentials through a multidisciplinary therapy approach. This, esse nItiBally, is all about restoration to normal life or near to normal in the event of a terminal ilFlness that have affected the normal functioning of body parts of the sufferer (Oxford Ad vOanced Learner‟s Dictionary 2000). Patients are usually referred to the rehabilitative sectiYon of the health care facility to benefit from the various activities that are made avaiIlaTble for these vulnerable clients. A multidisciplinary team of medical, nursing, social Sworker, occupational therapy, physiotherapy, speech therapist, pharmacy, pastoral carRe, dietetics, clinical and neuropsychologist all work together to ensure the best outcomes for Eall patients. There is a health directorate on aged care and rehabilitative care; these servicesI iVnclude prevention assessment, diagnosis, treatment support and rehabilitation for older peopNle (Mueller 2001). UPsychosocial 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 43 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 exeYrcise regimes, lifestyle programs, financial counselling, attendant care, home support and aRccessing accommodation service, (Australian Government Journal on Veteran‟s Affairs, 2010A). According to Okikiolu (2003), rehabilitation services are provided in aRs normalized an environment as possible emphasis is on the here and now rather than on pIroBblem from the past, work is central to the rehabilitation process. Emphasis is on social rath eLr than medical model, all people have underused capacities that they can develop; all peopNle can be equipped with skills centered on clients‟ strengths rather than on pathologies. The rAehabilitation service department of every health care facility involved in palliative careA deDlivery for the terminally-ill offers in patient and outpatient service which includes physBical therapy, occupation therapy and speech therapy (Oshin, 1999). Specialized treatment is pIrovided on a one-on-one basis. Individualized treatments are designed by therapist to adFdress each individual‟s specific needs and goals. Akinpelu, (2000) explained that physic aOl therapy is designed to restore and maximize functional independence, relieve pain and promYote quality of life. Patient and family education is always an important part of every treatmIenTt plan. Physical therapy is carried out with the assistance of the physiotherapist, their funcStion is to restore strength and function back to body parts that the illness has affected e.gR weakness of the limb. Assisted exercises are done to restore some, if not total function back Eto the body part affected. This gIoVes on in sessions and particular attention is paid to the general condition of the patient soN as to determine the extent of physical therapy, the health status can cope with. OccupUational 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 44 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 theYrapy or non-directive therapy is a form of treatment in which the client understands his or heRr present health situation and the choice of management (rehabilitative therapy available) Aand therapy decides what the goal of treatment would be. Family member‟s involvemenRt becomes very paramount with that of the health team. This sort of rehabilitative servicLe pIroBvides a comfortable and supportive atmosphere for the patient and gives him another lease of life. In rehabilitative service, controlling reinforcement caAn beN used. This is a technique in which the patient is given a reward for cooperative behaDviour 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,B if sAuch action is ignored, they will be able to recover from the emotional outburst faster, aInd can have a reward for acting maturely. Desensitization is another rehabilitative techFniques, this is used to help the patient overcome fear and anxiety, by gradually learning toO cope with increasingly stressful situations. Thus, anger can be expressed gradually to theY person offering rehabilitative service, then to a friend and gradually to the persons that IarTe not nice to the patient. Modeling is a technique in which the patient learns to handle a Sgiven situation by observing how someone else would respond to a similar situation. This Ris usually for the better and turns out to help the patient have some degree of health restoratioEn, and should the inevitable happen, he would exit with a reassuring frame of mind. Group IthVerapy is also helpful in rehabilitation. It involves those patients who are focusing on specifiNc life events, usually conducted in a relaxed atmosphere. Individual participants can share Uand 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 45 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 impYrove emotional state (Jcaho, 2011). The visitations provide support to the patients. Long terRm caring for the terminally-ill can be a chronic stressor that can be associated with anxietyA, depression, alteration in the immune system and increased mortality. However, providing suRpport has health benefits as well as instrumental supports to friends, relations and neighbourIs.B However, emotional support to spouses has been linked to a si gLnificant decrease in early mortality. According to Heltz (2000), dying persons have the neeNd to feel valued and accepted, maintain confidence and self-esteem, have their feelings knDownA, be assured of being remembered and also participate in decision-making activities. The Ahospice 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 counselli nIg Btheir families. This concept is carried out in a home like atmosphere for the terminally-ill. TFhough this can be arranged in the person‟s home if the facility for that is available. People cOan visit such ill patients as they like without restriction. So, the final days of the terminally-Yill are made to be as meaningful and pleasant as possible. IT 2.9 Family integrationS in palliative care Recognising thRe importance of a family necessitates clearly the definition of what is meant by “family.”E Most often, families in palliative care do consist of patients, their spouses, and their childIrVen. But in today‟s world of divorce and remarriage, step-relatives must also enter into the faNmily portrait. In other instances, people unrelated by blood or marriage may function as famUily (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 46 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 memYbers perceive their experience, how the relationships fit together, and that a multitude oRf factors combine to make families what they are. However, only recently has research gAone beyond focusing on the needs of dying patients for comfort and palliation, to addressinRg issues relevant to other family members. Much of research has focused on the family‟Is Bperceptions of their needs, (Martin, Berwich & Fyles, 2008), experiences and challeng eLs faced, adaptation and coping skills required for home care, the supportiveness of nuNrsing behaviours or physician behaviours and satisfaction with care. Most research has focAused on families of patients with cancer and other terminal illness, (Rhodes, Mitchel & MilleDr, 2007). WHO (2000) defined palliative care as an Aessential component of comprehensive package of care for people with terminal illness, iIt iBs an important aspect of care that uses a team approach to address the needs of the paFtients and their families including bereavement counselling if indicated. The recognitio nO of the family as the unit of care and their support and education are vital. (Tanchel, 2003)Y affirms that it is important to give time to family members to talk as individuals as well as IinT a group. There is a close connection between the family, the patient and the disease. InS palliative care, the creation of a safe place for families to talk is important. CommunicRation becomes constricted as members try to protect one another from painful feelings, faEmilies, thus, need help as the patient either withdraws or wants constant attention. ParkIeVs (2002) highlighted three major issues that can emerge even in well-functioning families wNhich are: acquiring information, concealing feelings and coping with helplessness. TanchUell (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 47 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 theirY own needs for information, emotional support, and assistance with care (Rhodes & MitchRel 2008). Much of the research that purports to address the impact of terminal illness Ron tAhe family is based on the perceptions of individuals either the patient or adult family mBembers (usually the spouse). Many of the studies were conducted retrospectively, that is, afteLr thIe 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 palliativeN experience of the family unit has been rare. Davies (1995) identified the basis for ofDferinAg optimal support to families in palliative care, and the research findings that prospecAtively 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, mos t ItrBansitions actually begin with endings. This is true for families living with serious illneFss in a loved one. A transmission that families themselves labeled as “fading away.” T hOe transition of fading away for families facing terminal illness began with the ending of Ylife as they knew it. They came to realise that the family member was no longer living IwTith terminal illness, but was now dying from the illness. Despite the fact that family membSers had been told about the seriousness of the prognosis, and had experienced the usualR ups and downs associated with the illness trajectory, for many, the realisation that thEe patient‟s death was inevitable, thus becomes evident. A patient once commented: NI V U 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 48 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 dementiaY care stressed significantly more, the need for forming support groups for families, offerinRg respite care, educating families, and trying to relieve families‟ feeling of guilt. In the canceAr-care group, staff assigned greater importance to being available to listen, creating a seBnseR of security, and supporting the family after death (Albinson & Strang 2003). FurthermoLre,I 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 andA huNmanely be supported in their caregiving work. Baker and Teno (2000) explained that supportinAg pDatients and other family members with redefining requires that health care providers appreBciate how difficult it is for family members to relinquish familiar perceptions of themselves a ndI adopt unfamiliar, unwelcome, and unasked - changes to their self-perceptions. DisengageFment from former perceptions and the adoption of new orientations occur over time. Nurs eOs and other care providers are challenged to help family members anticipate and prepare fYor what lies ahead, while not pushing them at a pace that threatens their sense of integIrTity. Each family member redefines at his or her own pace; interventions must be tailoSred according to the individual needs. At the same time, health care providers must supporRt the family as a unit by reassuring family members that their varying coping responses aEnd strategies are to be expected. OpporItuVnities should be provided for patients to talk about the losses incurred due to the illness, thNe enforced changes, the adaptations they have made, and their feelings associated with these Uchanges, 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 49 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 opportuYnities for spouses to discuss how they may reorganise priorities in order to be with andA carRe for the patient to the degree they desire. Considering resources that enable the spousRe to do this, the assistance of volunteers, home support services, or additional nursinBg services is most appropriate as postulated by Bridges (1999). I Caregiving techniques can be taught if the spouse shows inter eLst. With the children, the degree to which they want to be open or private about their parAent‟Ns 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 AfamDily life. Palliative care team members must realise that not all families communicate Bopenly or work easily together in solving problems. Nurses, in particular, can support pati enIts and family members to contend with change by creating an environment in which famiFlies explore and manage their own concerns and feelings according to their particular coOping style. Providing information so that families can explore various alternatives helps tYhem to determine what adjustments they can make. They can make information available nIoTt only verbally but also in writing. or, tape-record informative discussions so that familiesS can revisit what they have been told (Davies & Seele 2000). Rituals can be hRelpful during periods of terminal illness. A family ritual is a behaviour or action that reflectsE some symbolic meaning for all members of the family and is part of their collective expIeVrience. A ritual does not have to be religious in nature. Rituals may already exist, or they caNn be newly created to assist the family in contending with change. For example, the writinUg 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 50 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 alleviYation programmes and possibly grants. Some philanthropist organization could even be cAonsRulted 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 resulRt in a number of financial consequences, some of which are related to the inability to perIfoBrm social roles (e.g unemployment or having to pay for someone else to look after the ch ilLdren/dependent relative). Other bills might become higher as a result of prolonged stay at hNome, some patients and family care giver may come to find out that their accommodationA is not suitable for their altered physical needs, necessitating moving house or adaptatiAon Dto living environment or moving from upstairs to downstairs. The terminally-ill and theirB family may need to be involved in planning for the future such as taking steps to make a will aInd making decisions about who looks after the dependent children. F Those who have a short life Oexpectancy face loss at every level, physical health independence, career, normal famYily life predictability and future illness. Loss with its antecedent financial involvemIenTt represent more than simply a crisis for patients and families, they also present a remarkaSble opportunity for self awareness, change and growth (Smith 1990). Practical help cRan be arranged by the health team attached to the health facility to enable access to financialE benefits or legal advice, Liason with local and national statutory agencies, organising pacIkVage of care at home or negotiating placement and securing funding for residential nursing hoNme care. This social care involves identification and mobilization of resource that will help tUhe 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 51 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 Ybasic self care (Mitchell, 2000). Those with inadequate support are believed to be at mucAh hiRgher risk of death from variety of life-limiting diseases like cancer, cardiovascular diseRases and kidney problems. Various studies have shown that increased physical and social support have increased likelihood for longer survival. IB Ogunboye (2010) claimed that the important part of promoti ngL physical care is proper grooming. Good grooming consists of practices that keep theN body healthy; this helps in psychological satisfaction for the ill patient. Activities of dDailyA living in self care includes taking care of the skin which has to be washed daily, if the pAatient is weak to do this on his own, the carer can help to do this, using soap, towel and wateBr. The soap would break down oil on the skin and remove dirts that may clog pores on the ski n,I the skin should be wiped dry with clean towel after bathing, after which talcum powder cFan be rubbed on pressure points to improve blood circulation to those areas and, thus, pr evOent breakage of the skin. If the patient is very weak to ambulate, the team involved shoulYd turn the patient frequently to relieve pressure on the bony surfaces of the body. IT Furthermore, the haSir needs attention too. If need be, arrangement can be made for a hair cut with approval froRm the patient and significant family members involved in his care. If female, the hair canE be done neatly and kept tidy, all these activities are part of good grooming. Any dirty cloIthVes should be changed and beddings kept dry to prevent air borne infections and, thus, creaNte psychosocial stability for the patient. Combs and brushes should be appropriately used aUs 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 52 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 groupsY and pastoral care. Psychosocial care, thus, encompasses psychological approaches, wRhich are concerned with enabling patient and those close to them express thoughts, feelingsA and concern relating to illness; it also embraces psychological interventions to improBve Rthe mental and emotional wellbeing of the patient‟s families and carers. I L 2.12 Lifestyle modification and palliative care N This involves a shift from “what used to be” to “wDhat Ais now.” It demands adjustment in how individuals see themselves and each other. PatieAnts maintained their usual patterns for as long as possible, and then begin to implement feasBible alternatives once they realized that their capacities were seriously changing. Patients who Iwere unable to redefine themselves in this way attempted to maintain their regular patterns Fdespite the obvious changes in their capacity to do so. They ended up frustrated, angry, an dO feeling worthless. These reactions distanced them from others, resulting in the patients feelYing alone and, sometimes, abandoned (Mehta & Ezer, 2003). For the most part, spouses toIoTk the patient‟s physical changes in stride, they attributed the changes to the disease, notS to the patient personally, and as a result, they were able to empathise with the patient. PatienRts‟ redefining focused on themselves, the changes in their physical status and intrapersonal aEspects; spouses‟ redefining centered on their relationship with the patient. Spouses did thIeVir best to “continue on as normal,” primarily for the sake of the patient. In doing so, they coNnsidered alternatives and reorganized their priorities (Andershed, 2004). USherman (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 53 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 caregiYver‟s ability to cope. Indeed, the ill person was not simply a passive recipient of care but hAad aRn impact on the experience of the care giving spouse. Temo and Cassey (2004) reported that adult children also redefineRd the ill family member; they redefined their ill parent from someone who was strong and cIoBmpetent to someone who was increasingly frail. Children felt vulnerable in ways they had n oLt previously experienced. Most often, children perceived that the changes in their ill parent Nwere the result of disease and not intentional: “It‟s not my father doing this consciouslyA.” Younger adult children were particularly sensitive to keeping the situation private, cAlaimDing they wanted to protect the dignity of the patient, but seemed to want to protect theiBr own sense of propriety. For example, one young woman in her early twenties was “deva sItated” when her father‟s urinary bag dragged behind him as he left the living room where Fshe and her friends were visiting. It was difficult for some young adults to accept such m Oanifestations of their parents‟ illness. Adolescents in particular had a difficult time redefiYning the situation. They preferred to continue on as if nothing was wrong and to shield themIsTelves against any information that would force them to see the situation realistically (DaviSes, 2000). Burdening: Feeling aRs if they are a burden for their family is common among patients. If patients see themseElves as purposeless, dependent, and immobile, they have a greater sense of burdening theIiVr loved ones. The more realistically patients redefined themselves as their capacitiesN diminished the more accurate they were in their perceptions of burdening. They acknoUwledged 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 54 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 cYould manage one more minute. But also claims if he had to do it over again, he would noAt heRsitate. He had no regrets for what he has been doing (Brazil & Lohfield, 2009). Andershed (2004) further commented that children, too, experienced buRrdening, but the source stemmed from the extra responsibilities involved in helping to caIreB for a dying parent, superimposed on their work responsibilities, career development, and Ltheir own families. As a result, adult children of all ages felt a mixture of satisfaction aNnd exhaustion. Their sense of burdening was also influenced by the ill parent‟s redefining ifA the ill parent acknowledged their efforts, they were more likely to feel satisfaction (GoAy &D Carter, 2007). However, children‟s sense of burdening was also influenced by the staBte of health of the well parent. If that parent also was ill or debilitated, the burden on child rIen was compounded. If children were able to prioritise their responsibilities they would paFy attention to their own needs as well as help their parents, they feel less burdened. Ch iOldren seemed to perceive caregiving as a task they themselves would do. Of course, thYey did not have the life experience of a long-term relationship that motivated the spouses tIo Tcare for their partners, (Davies, 2000). Other palliative care professionals can help paStients find ways to relieve their sense of burden, and can provide patients with opportuniRties to talk about their fears and concerns and to consider with whom they want to share their Eworries. In this way, patients may alleviate their concern for putting excessive demands on fIamVily members. The importance of a break for family members, and suggest that patients aNccept assistance from a volunteer or home-support services at those times to relieve familyU 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 55 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 wantiYng to believe they will survive and knowing that they will not. On “good days,” patients felt oRptimistic about the outcome; on other days, they succumbed to the inevitability of their Aapproaching demise. Often, patients did not want to “give up” but at the same time were “tiRred of fighting.” They wanted to “continue on” for the sake of their families but also wLantIedB “it to end soon” so their families could “get on with their lives.” Patients coped by hopin g for miracles, fighting for the sake of their families, and focusing on the good days (Field, N1997; Davies 2000). Children struggled with hanging on and letting go to a greater exteDnt tAhan their parents. They wanted to spend time with their ill parent and also to “get on withA 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 B& Cassel 1997). F I 2.13 Re-allocation of roles and pall iaOtive care Those facing terminal illnesYs in a family member experience changes in every realm of daily life-relationships, roles, sIoTcialization, and work patterns. The focus of the changes differed among family members. PSatients faced changes in their relationships with everyone they knew. They realised that the Rgreatest change of their life was underway, and that life as they knew it would soon be gonEe. They tended to break down tasks into manageable pieces, and increasingly, they focused IinVward. The greatest change that spouses faced was in their relationship with the patient (DNavies, 2000). They coped by attempting to keep everything as normal as possible. ChildUren 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 56 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 oYf the experience, however, often focused on future consequences of the pain. The meaning aRttributed to the patient‟s experience also influenced spousal bereavement. (Martin, BarwiAch & Fyles, 2008). For example, spouses who witnessed the patient die a painful death, aRnd who believed that physician‟s negligence was the cause of the pain, experienced elevIaBted anger and much distress after the death (Carr ,2003). L Traditionally, palliative care practice and discussions haveN focused on families of cancer patients. At the same time, care of the patient with cardiac DdiseAase, 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 Bhas,A until recently, not been a well- discussed issue in the treatment of the patient with heart d isIease. For most patients with heart disease, and particularly for those with heart failure, the dFecline in functional status is slower than for patients diagnosed with cancer. Barnes (2006) Oreported that if palliative care is considered only after disease-related care fails or becomYes too burdensome, the opportunity for patients to achieve symptom relief, and for patienItTs and family members to engage in the process of fading away, may be lost. Consequently,S following a model of care wherein issues of treatment and end-of-life care are discussed eaRrly and throughout the illness trajectory facilitates patient and family coping, and enablesE nurses to optimally support families. NI V 2.14 Centre for palliative care Nigeria UPalliative 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 57 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. Y Soyannmo (2004) envisaged palliative care as a helpful approach in the managRement of HIV/AIDS epidemic in Nigeria; she added that the template upon which palliative cAare and pain management was successfully implemented among women with terminal diseaRse for breast and cervical cancers could also be used to manage the pain associated with LHIVIB/AIDS and other life limiting diseases. Centre for palliative care Nigeria (CPCN) is a not-for-proNfit organization which was set up to champion the cause of palliative care in Nigeria. PalliatiAve care involves treatment of pain and distressing symptom associated with life limitDing illness and providing support (psychological, social and spiritual) for patient. SuBch aAll encompassing (holistic) type of care is hitherto not available in Nigeria despite million sI of patients and families that can benefit from such care. F Since 1996, members of CPCN hOave been at the forefront in a bid to making strong pain medication (opioids, including oralY morphine) available in Nigeria, and also to developing pain management and palliative caIreT education and services in the country. Through special training courses and workshops, Sover 200 health professionals (doctors, nurses, social workers, pharmacists, and physiRotherapists) have been trained by the organisation. Its collaboration with the University ColElege Hospital, Ibadan has led to the establishment of the first palliative care service in NiIgeVria which include providing care for in-patients, running a special outpatient clinic, dayN care hospice and home-based care for those patients and families with challenging end oUf 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 58 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, traYining of allied health workers, care givers and volunteers on the concept of holistic care, trRaining of team members and also assisting and monitoring other organisation in Nigeria Ato establish palliative care training and service. The University of Nigeria Teaching HospRital, Enugu and Federal Medical Centre, Abeokuta also have Palliative Care Units. B LI 2.15 Empirical studies N Some relevant empirical studies referred to as the rAecord of direct observations and experiences of previous work on palliative care are hereby Dhighlighted. The volume of research in palliative careB hasA grown dramatically in the last decade. George (2002) found one thousand articles on eInd-of-life issues of which four hundred were empirical studies. However, there remainsF important areas that are yet to be adequately addressed (Penrod, Morrison 2004). UOnder researched arrears include barriers to assessing palliative care, supportive services,Y psychosocial and spiritual issues. World Health Organization (2004) highlighted the importIaTnce of palliative care of older people and those from different cultures. S st Onyeka‟s (2013R) work on 21 century palliative care: A tale of four nations provides a focused review on Ethe progress of palliative care practice in four developing nations (i.e Nigeria, Georgia, EthiIoVpia and Tanzania) Onyeka and colleagues highlighted the specific challenges unique toN each nation and proposed steps needed for the growth of palliative care services in these Ufour 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 59 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 IbYadan, Nigeria. The study was carried out by reviewing the case notes of all patients with Radvanced cervical and breast cancer that received palliative care in the newly established Ahospice and palliative care unit of UCH within a period of thirty months (2008-2010). PalRliative measures applied include medications, assessment of response to care, assessmenLt oIfB level of satisfaction to care provided. Out of 178 patients, reviewed 80 had cervical can cers, while 98 had breast cancers. N About ninety three percent of these patients presentedA with pain, most commonly used drug was oral morphine. Approximately fifty eight of tAhesDe patients were not resident in Ibadan, financial constraint was the most reported psychoBsocial issue 24.1percent, 36.5 percent have gone back to where they were referred from. 5 7I.3percent were reported dead while 6.2percent were still receiving care from the palliative cFare team. The study concluded that pain was a major symptom at presentation for majority ofO the patients used for the study. The percentage of the patients resident outside Ibadan waYs high in comparison with those resident in Ibadan. Indicating additional travel cost to receivIeT treatment. Literature has idenStified that palliative care of the terminally-ill and those with life limiting illness, thoughR on expanding field, funding is limited and has been largely contingent on the pharmaceuticalE industry in pursuit of approval for analgesics and other agents to address symptoms coInVcerned (Ferrel, 2004). Worryingly, there is lack of funding by foundations and governmeNnt agencies. Only a small share of cancer research funding is devoted to palliative care in theU 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 59 60 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 vaYrious aspects of research programme. The model of dignity in the terminally ill forms the bRasis of a novel intervention called dignity therapy. This individualised, brief psychotheraApy has been designed specifically to maintain the dignity of dying patients and their familiesR. This study also informs the understanding of how notions of personhood are important tLo aIckBnowledge in pursuit of dignity conserving care. Morgan, Massaro and McMillan (2000) examined the aAsseNssment 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 assessmentA anDd 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 the reI wBas little evidence to suggest the impact of specialist palliative care on patients‟ quality oFf life. Godwin (2003) measured the eOffectiveness of palliative day care in improving pain, symptom control and quality of lifYe, he made use of prospective comprehensive study, Mcgill quality of life (MQOL) and PIalTliative care Outcome Scale (POS), Result was that the day care group has better pain contrSol at the first assessment and symptom control at the second interview than the comparison gRroup within the day care group. The palliative care outcome scale item „symptom control wEas significantly worse by the final interview. Both groups maintained overall quality of life IdVuring the three months of the study. ThNe hospital quality of life index (HQLI) administered within 48 hours of admission and three Uweeks 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). 60 61 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 Ytests performed was greatest in the palliative care unit as compared to home care. R Lee (2006) in her study examined controlling involvement to promote cAonfidence in palliative care decision-making (made use of grounded theory), she exploreBd thRe perspective of patients with advanced illness, their experiences and making care deIcisions. The findings indicate that partnerships between conditions for decision-making in pLalliative care provide the most favourable conditions for decision-making in palliative caAre wNhere patients can comfortably communicate their decision needs. However, her finDdings contradict models of patient participation which favour patients being independent decision makers, though the content and process of communication with patients and the imBpoArtance of identifying the needs of family members as separate to the needs of patients in c aIre decision-making. Herth (2000 & 2001) tested a Hope FIntervention Programme (HIP) which she evaluated in the sample of people with recurrent cOonditions of life limiting illness (cancer). Based on her empirically derived theory of hopeY, the intervention consisted of eight sessions delivered in a nurse facilitated group settingI; Tsix sessions focused on strategies that specifically address the four hope processes: expeSriential, relational, spiritual and rational thought. During the final session, participants dReveloped an individual plan with strategies to maintain and foster hope, when Herth testedE this intervention, she found significantly increased hope levels in the treatment grouIpV compared with two control groups. This significant difference persisted at three, six and niNne month follow-up measurement. UCantrell 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 62 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 creativeY and diverse approaches that palliative health care providers can use to support and pAromRote hope among patients and families facing life threatening illnesses. One of the goals of palliative care is to provide psychosocial supBporRt to patient and families facing terminal illness. Psychosocial care has been defined asI concerned with the psychological and emotional well-being of the patient and their family /cLarers including issues of self esteem, insight into an adaption to illness and its consequNences, communication social functioning and relationship (Macleod, 2008). The earliesDt syAstematic reviews of interventions for family carers of palliative care patients were conducted by Harding and Higginson (2003). Key data basis were searched for reported interventBionA. Their review identified twenty-two cases related to interventions, five interventions wer e Ievaluated via randomised controlled trials. A range of intervention approaches was ideFntified including home care, respite care, social networks and activities, problem solvi nOg and education, one on one therapy and group work. They concluded that there was onYly a small body of evidence regarding the effectiveness of interventions for carers of cancIeTr and palliative care patients; the bulk of the evidence came from a small number of studies tShat were graded as moderate to weak in terms of rigour. Furthermore, evaluating the status oRf supportive interventions for carers was acknowledged as one of the priorities for the intEernational palliative care family care research. Two oIthVer studies conducted by Duggleby (2007) via qualitative data method reported that carerNs perceived psychosocial support intervention as beneficial. They conducted a pre- test/poUst-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 63 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 mYodel (Evans, Store & Elewyn, 2003). This conclusion was reached mainly because of the mRodels in rural areas. It was then deemed better to think of hospice palliative care as a philosAophy of care rather than as a site of care. Further evidence must, thus, be focused on furtherinRg understanding of how best to meet the palliative care needs of rural dwellers, theiIr Bcaregivers and the professionals who serve the rural community. L Qualitative study carried out by Conley and Barman (1997N) on the informational needs of primary care giver of terminal patients who receive home cAare while in a rural setting. The subjects were interviewed over a period of twelve moDnths of the family members‟ death. Average percentage of respondents recorded oveBrallA satisfaction with information available during care provision stress and exhaustion we rIe reported. The identified specific needs were information about patient‟s disease progressFion, symptoms, side effects and treatment options with expectation. Available supports th rOough health care and other agencies. Hospice and home care specialist need to function Yeffectively to assist caregivers, focus more on addressing caregiver stress and coping. FIinTally, community resources must be continually reassessed and work should be geared towSards filling the gaps. Passik (2002), Rin his pilot study of oncology staff perceptions of palliative care in rural and community seEttings, explored perceptions on difficulty in managing symptoms and side effects associaItVed with managing cancer symptoms and availability of hospice care and barrier to obtaining Nservices. Results show less than optimal delivery of palliative care in rural settings, confuUsion 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 64 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 resYident in the area. R Oyebola (2007) looked at the role of palliative care in the era of AntiretroAviral therapy (ART) and vice-versa, solely on clients with HIV/AIDS, he discovered the neeRd to address the ethical issues surrounding the disease epidemic, stressed the need fLor IeBqual distribution of appropriate drugs and that palliative care must be accessible and affor dable, as such should be a fundamental right of every HIV positive client. N Akeredolu (2008), however, reviewed gender issues in Apalliative care. She, as the founder and President, Breast Cancer Association of Nigeria A(BRDECAN), highlighted the existence of gender issue for women with terminal illness. ThBe cultural and community expectation of the roles women play as the family carer, concerns tIhat women do not come out to the open early enough, thereby fail to receive adequate incoFme and concern about who to take care of children as a result of disease progression. Th eO essence of appropriate health education was thereby highlighted to assist them out of ignYorance. IT 2.16 Theoretical frameSwork The relevant thReoretical framework for this study is; the sociological theories of illness and health care, whEich are structural functionalism theory and symbolic interactionism theory. Structural fuInVctionalism theory - StNructural functionalism began with Herbert Spencer (an English Sociologist) known for Ucoining 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 65 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 patientY, this study will attempt to determine the efficacy of other „collective means‟/socialA inRstitutions (psychosocial support and family integration) as determinants of a social subsRystem (palliative care) in terminally-ill patients at the University College Hospital, Ibadan, BNigeria. At a micro level, the structural functionalism slant of this study is founded uLponI the orientation that psychosocial support and family integration are critical to the qualit y, scope and depth of the palliative care provided to terminally-ill patients at the UnAiverNsity College Hospital (UCH) Ibadan, Nigeria There are a number of key assumptions in StrAuctuDral Functionalism theory. One of the . assumption is that institutions are distinct and shoBuld be studied individually Many Structural Functionalists look at institutions individual lyI as though they are divorced from other institutions. This is a mistake, as institutionFs are interlinked in society and those employing a structural functionalist approach should Otake into consideration the network of relationships that exist between these institutions. (DYavis & Moore, 1984). The palliative care of terminally ill patients cannot be looked at inI Tisolation given their interconnectedness to psychosocial support and family integration. S Structural FunRctionalism views society as constantly striving to be at a state of equilibrium, whEich suggests there is an inherent drive within human societies to cohere or stick togetherI. VThis is known as the cohesion issue (Hark & Durk, 2007). Societies strive towards eNquilibrium, not through dictatorial mandate by the leaders of society but rather because the soUcial 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 66 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 Yparts (i.e. its constituent actors, human subjects). R Structural Functionalism also has an anthropological basis in the work of thAeorists such as Radcliffe-Brown (2004). It is in Brown's specific usage that the prefix 'struRctural' emerged. Radcliffe-Brown believed that society constitutes a separate "level" of realIitBy, distinct from both biological and inorganic matter. Individuals are, therefore, merely Ltranscient occupants of comparatively stable social roles. The predictability of psycNhosocial support and family integration in palliative care of the terminally-ill is an exampAle of stable social roles given the need for humanity to live in harmonious adjustment to one Danother. Herbert Spencer, a British philosopher famoBus fAor applying the theory of natural selection to society was in many ways the first true sociol ogIical functionalist (Cuff & Payne, 1998). While Durkheim is widely considered the most imFportant functionalist among positivist theorists, it is well-known that much of his analys isO was culled from reading Spencer's work, especially his Principles of Sociology SpenceYr compares society to the human body. Just as the structural parts of the human body - IthTe skeleton, muscles, and various internal organs - function independently to help the Sentire organism survive, social structures work together to preserve society (Cuff & Payne,R 1998). Spencer coEncluded that society is constantly facing selection pressures (internal and external) thatI fVorce it to adapt its internal structure through differentiation. Every solution, however, Ncauses a new set of selection pressures that threaten society's viability. It should be noted Uthat 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 67 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. Y Durkheim proposed that most stateless, "primitive" societies, lacking stronAg ceRntralised institutions, are based on an association of corporate-descent groups (Nolan & Lenski, 2004). Durkheim was concerned with the question of how certain societies maintain Rinternal stability and survive over time. He proposed that such societies tend to be segmeInBted, with equivalent parts held together by shared values and common symbols. Durkheim uLsed the term "mechanical solidarity" to refer to these types of "social bonds based on coAmmNon sentiments & shared moral values, which are strong among members of pre-industriaDl societies (Parson & Shills, 1999). In modern, complicated societies, members perform very different tasks, resulting in a strong interdependence. Durkheim argued that comBplicAated societies are held together by organic solidarity. The central concern of stru cItural functionalism is a continuation of the Durkheimian task of explaining the apparenFt stability and internal cohesion needed by societies to endure over time. Societies are s eeOn as coherent, bounded and fundamentally relational constructs that function like organiYsms, with their various parts (or social institutions) working together in an unconscious,I Tquasi-automatic fashion toward achieving an overall social equilibrium. All social andS cultural phenomena are therefore seen as functional in the sense of working together, andR are effectively deemed to have "lives" of their own. They are primarily analysed in terms oEf this function. The individual is significant not in and of himself, but rather in terms of hiIs Vstatus, his position in patterns of social relations, and the behaviours associated with his sNtatus. Therefore, the social structure is a network of statuses connected by associated roles. U 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 68 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 cannYot be taken lightly. Psychosocial support and family integration must individually andA coRllectively constitute a seamless piece of the puzzle. The whole is more than the sum of its iRndividual parts. Symbolic Interactionism Theory The term „„symbolic interactionism‟‟ was invented by BlumLer I(B1999) to describe sociological and social psychological ideas he presented as emana ting directly from Mead, „„Symbolic interaction theory‟‟ is a term that is related to thosAe idNeas, though not necessarily in the specific forms presented by Blumer or Mead. Its theoretical proposition considers the self to reDflect society and organises behaviour that addresses the nature of human interaction, and Athe relationship between society and the person. Its imagery begins with a vision of s ocIiBety as a web of communication: Society is interaction, the reciprocal influence of personFs who, as they relate, take into account each other‟s characteristics and actions, and inte raOction is communication. Interaction is „„symbolic,‟‟ meaning it is conducted in termYs of the meanings people develop in the course of their interdependent conduct. The IeTnvironment of human action and interaction is symbolically defined: It is the environmSent as it is interpreted that is the context, shaper, and object of action and interaction. PersonRs act with reference to one another in terms of symbols developed through interaction and act Ethrough the communication of those symbols. Society is a label aggregating and summarisIinVg such interaction. Society does not „„exist‟‟; it is created and continuously re- created asN persons interact. Social reality is a flow of events joining two or more persons. PalliaUtive 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 69 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 invYolve more than reflected appraisals of others in the immediate situation of interaction; selveRs involve persons as subjects responding to themselves as objects. Thinking takes place aAs an internal conversation that uses symbols that develop in the social process. Mind arRises in both the evolutionary and individual senses in response to problems (interrupItioBns in the flow of activities) and involves formulating and selecting from symbolically d eLfined alternative courses of action to resolve those problems. Choice is an omnipresent realiNty in the human condition, and the content of choices is contained in the subjective expDerienAce of persons as that experience develops in and through the social process. Following this imagery is a view of humanB beiAngs, both collectively and individually, as active and creative rather than simply resp oInsive to environmental stimuli. Since the environment of human action and interactiFon is symbolic; because the symbols attached to persons (including oneself), things, and Oideas are the products of interaction and reflexivity and can be altered and manipulated inY the course of that interaction; since thought can be used to anticipate the effectiveness ofI aTlternative courses of action in resolving problems; and because choice among alternativesS is an integral feature of social conduct, one arrives at an image of social interaction as litRerally constructed, although not necessarily anew in each instance and in the course of interaEction. This could result in an indeterminate human behaviour in the sense that the course anIdV outcome of social interaction cannot, as a matter of principle, be completely predicted Nfrom conditions and factors existing before that interaction. Palliative care services do not eUxist 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 70 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 palliativeY care depending on the depth of the empathy demonstrated by the various actors involved. AtR the most rudimentary level, empathy is not about listening to another in order to generate Ra resAponse 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: IB 1. preparatory stage - meaningless imitation by the infant. L 2. play stage - actual playing of roles occurs, but no unified coNnception of self develops. 3. game stage - this is the completion stage of self-deDvelAopment; 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 sitAuations because he/she acts in accordance with a generalized set of expectations an dI dBefinitions he/she has internalized. The self consists of two parts, the I aFnd the Me. The I is the impulsive tendency of the individual and the spontaneous, un orOganized aspect of human existence. The Me is the incorporated other within the indYividual. The incorporated or generalized other supplies an organised set of attitudes and IdTefinitions, understandings and expectations) that are common to the group to which the indiSvidual belongs According to MRead (2004) presentation of the „I‟ and the „Me‟ action begins in the form of the I and ends inE the form of the „Me‟ the „I‟ gives propulsion while the Me gives direction. Additionally, IthVe I, being creative and spontaneous, provides for change in society. The Me, being regNulatory, works to maintain society. Thus, the concept of self is a powerful and comprUehensive 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 71 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 interpretatioYns or meanings). The mind is also the component of the individual that interrupts responsAes toR 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 caBrriesR on an internal conversation. I The basic assumptions of symbolic interactionism, according tLo Herman and Reynolds (1994), are: humans live in a symbolic world of learned meaAningNs, symbols arise in the social process and are shared, symbols have motivational significance; meaning and symbols allow individuals to carry out distinctively human action anAd iDnteraction. The mind is a functional, volitional, teleological entity serving the interests Bof the individual; humans, unlike the lower animals, are endowed with the capacity for thou gIht; the capacity for thought is shaped by social interaction, the self is a social construct; jusFt as individuals are born mindless, so too, are they born selfless. Our selves arise in social iOnteraction with others, society is a linguistic or symbolic construct arising out of the social pYrocess; it consists of individuals interacting and sympathetic introspection is a mandatory mIoTde of inquiry. RSE NI V U 71 72 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 Y Satisfaction counselling analgesics)  Positive self coRncept  Hopeful A S ocial support  Prevention of  Companionship  AcceptRs prognosis suffering (family  Spirituality  EnIdB of life  Rehabilitative involvement in care) support L  Multidisciplinary  Regular visitation approach to care N F amily Integration A Home based care  Financial assistance D  Life style  H ospice care A modification B  Re-allocation of roles I F O AdaptedY fro m Macmillan & Mahon (2004) In this framework, struIcTtural functionalism is a function of different part of the system working cohesively togethSer to produce a state of equilibrium. The above framework explains the three different indeRpendent variables with the component of each as they significantly lead to palliative care procEess in order to ensure good quality of life. Given the fact that society needs to solve problemIsV and coordinate the regulatory environment within which palliative care process functions,N this must be such that the well-being of the terminally-ill is regarded as most imporUtant. 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 73 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 increYasing proportion of the elderly among us. In addition, there is increasing urbaRnization, industrialization, and westernization of dietary and other socio behavioural attituAdes in most developing countries. In Africa alone, it is estimated that about 2.5 millionB peoRple die annually from HIV/AIDS, while more than 0.5 million die from cancer and otherL deIbilitating diseases. As a result of this, one is overwhelmed by the large number of patients nee ding palliative care. This critique aims to appraise the need for focused researchA, in Norder 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 Dthat value the practical and ethical challenges of palliative care research as unique andB inAsurmountable. These two perspectives are argued from a null hypothesis that evidence-b asIed research needs not violate the physician‟s duty of care to his or her patients and maFy take place with the express intent of achieving symptomatic relief for both the prese nOt subject and future patients. The subjective nature of effective palliation is at the crux ofY the discussion; the text stresses recurrent themes in patient‟s view on palliative care. For inIsTtance, many dying patients value autonomy, spiritual guidance, psychosocial support, and Ssymptom relief, as well as the involvement of, and support for, their families. R 2.17.2 Late PresenEtation and Late Diagnosis: In practice patient present late when disease is already compIliVcated and degenerated thus leading to late diagnosis. In many development countries,N patients often present with incurable condition at diagnosis. This is due to belief that the diUsease 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 74 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 develoYping nations and include drug availability, lack of referrals, fears of misuses of potent narcotiRcs/under- prescribing, lack of public awareness (healthcare workers, policymakers/adminAistrators, the public), cultural and religious beliefs. Shortage of financial resources, limiBtatioRns of healthcare delivery systems and personnel, absence of national policies on pain reliLef aInd palliative care and legal restrictions on the use and availability of opioid analgesics. 2.17.4 Applied theories: Structural functionalism by HerberAt SpNencer and Emile Durkhelm in th19 century, delves on the understanding of society that viDews 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 insBtitutAions as being interlinked in society and thereby take into consideration the network of r elIationship that exists between these institutions. Society is also viewed as constantly striving Fto be at a state of equilibrium. The palliative care of terminally ill patients cannot be looked aOt in isolation, given their interconnectedness to psycho- social support and family integratioYn. Society is compared toI Tthe human body, just as the structural parts of the human body function independently to Shelp the entire organism survive, social structures work together to preserve society. ThuRs, the regulatory environment within which palliative function must be such that the well-bEeing of the terminally-ill must be of paramount importance at all times; hence psycho-socialI sVupport and family integration provide the yardstick within which the variables of palliative Ncare process are measured. USymbolic 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 75 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. Y AR LIB R N AD A B OF I SI TY ER NI V U 75 76 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. Y 3.2 Population of the study R The population of the study was 587 and were in three categories and coAmprised 202 terminally-ill patients from wards and clinics as well as 202 family caregivers Rrepresenting one family caregiver for one patient while the third category were the healthI Bworkers made up of doctors, nurses social workers and physiotherapists selected also f roLm the same wards and clinics totalling 183 health workers. Total respondents for the AstudNy were 587. 3.3 Sample and sampling technique D The study adopted proportionate, stratified BandA purposive sampling procedures to ensure actual representation of respondents from the t hrIee categories. i.e Health workers, patients and family caregivers. The health workers wereF stratified into four strata based on their professions (doctors, nurses, physiotherapists and sOocial worker). Sixty percent of the total population of health workers‟ category were cYhosen from each stratum because they constituted a good representation in the health woIrTkers category. From the chosen eSight wards and three out-patients clinics, 202 terminally-ill patients were chosen excludinRg the unconscious patients in each of the chosen wards. The same applies to their family caEre-givers selected at the ratio of one family caregiver to one patient (202 respondents eIaVch from the two categories). UN 76 77 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 Y31 Medical Out Patient MOP 6 8 2 3 17 30 R 30 West West One WW1 4 7 2 3 13 20A 20 South West Four SW4 4 6 2 3 15 R10 10 South East Two SE2 5 7 3 2 16I B 13 13 West Three W3 3 5 2 2 L12 12 12 West West Two WW2 4 6 2 A2N 10 12 12 East Two E2 4 5 2 East One E1 3 7 2A D 2 12 10 10 2 12 10 10 Total IB 183 202 202 3.4 Instrumentation F The data for this study was coll eOcted using three separate instruments for patients, health workers and family care giveTrs. YThe instruments were psychosocial support scale for the terminally ill, family integratioIn scale for the family care givers and palliative care services scale for the health workers. SThese were complemented with In-depth. Interview (IDI), using subthemes of psycholRogical support, social support and family integration for all the three categories of reVspoEndents. I PsychUosoNcial 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 78 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. Y Family Integration Scale R This was an 18 item instrument that utilises family integration in palliativRe cAare (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 draIwBn on a 4 point scale of Strongly Agree, Agree, Disagree and Strongly Disagree, each carry inLg the weight of 4,3,2 and 1 respectively. N Three instruments have been previously used in DvalidAating the family disruption from illness. The concurrent validity of the previously usedA instrument was generally good. Thus, it emphasises its ability to measure the family involvement in palliative care. The correlation co-efficient of the pre vIioBus studies were reliable. However, family disruption from illness correlated significaFntly in the expected direction, thus ensuring its reliability. Hence 0.65 was obtained for rOeliability co-efficient. Y Palliative Care Services ScalIe T This comprises of 1S5 item instrument on health care as perceived by the health workers in palliative care (HWPPRCQ). It was adapted from palliative care evaluation tool kit by Weissman (1999). The items Ewere drawn on a four point scale of: Strongly agree, Agree, Disagree and Strongly disagIrVee. Each carried the weight of: 4, 3, 2, and 1, respectively. ThNe palliative care tool kit relied solely on existing literature which was also selected from tUhe 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 79 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 taYking. The in-depth-interview guide is in appendix 1. R A Table 3.1: List of IDI Sessions Conducted for the Study R Ward/Clinic Designation of No of sessions Date conducteId B No of Respondents L Respondents Radiotherapy ward Physiotherapist 1 8/10/2N013 1 Radiotherapy Clinic Patient 1 8/10/2013 1 Family 1 8/A10/2013 1 Caregiver Surgical Out patient Patient 1 AD15/11/2013 1 (SOP) Family 1 B 15/11/2013 1 Caregiver South West Two Doctor 1 I 27/9/2013 1 East One Nurse 1 19/12/2013 1 East Two Social Worker O1 F 19/9/2013 1 Medical Outpatient Doctor 1 5/11/2013 1 West West One Nurse Y 1 14/12/2013 1 IT 10 10 S Sub Themes of IDI 1. Perception oEf thRe three categories of respondents on palliative care 2. PsycholVogical support and palliative care 3. SocialI Support and palliative care 4. UFaNmily 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 80 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 (IDYI) for the three categories of respondents. The participants for the IDI were selected from Rthe three categories of respondents, each professional in health worker category was represAented. Same number of patients and family caregiver were interviewed. BR I 3.8 Method of Data Analysis L The data collected were analysed using descriptive statistNics of simple percentages and bar charts for the demographic data while multiple regressionAs and Pearson‟s product moment correlation was used for research Objectives and hypoAthesDes. Content analysis was used for the In-depth-interview. Findings in IDI were documBented and used to support literature in the discussion of findings. I F 3.9 Ethical Consideration O Due to the nature of this reYsearch, the life threatening disease condition s require some moral restraint in order not to IvTiolate individuals‟ rights. Thus, ethical approval was sought from relevant institutional authSorities i.e UI/UCH ethical committee which was approved. Informed consent was also obtaiRned from the participants in the study. VE I N U 80 81 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 hypothesesY and two research questions were presented in tabular forms followed by detailed discussioRn in part “B”. These were complemented with report from the qualitative data obtaineRd froAm in-depth-interview. PART A: LI B This part of chapter four presents the demographic characteNristics of the respondents such as the respondents‟ age, marital status, gender, and religionD. A 4.1 Demographic characteristics of the respIonBde Ants: 250 F 195 200 O ITY 148 150 S 132 100 ER86 V 50 NI26 U Health workers0 Family Cargivers Age 10-20 Age 21-30 Age 31-40 Age 41-50 Age 50+ Patients 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 82 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. Y R 400 375 RA 350 LIB300 250 N SingleA Married200 D Divorced154 150 A Widowed IB Separated100 50 F 37 0 1O5 6 Single Married YDivorced Widowed Separated Figures 4.2: Bar chart shSowiIng T the distribution of the respondents by marital status Figure 4.2 aEbovRe shows the bar chart of the distribution of the respondents‟ marital status (health workeIrsV, family caregivers and patients). This revealed that majority of the participants were marNried 375 (63.8%), 154 (26.2%) were single; 37 (6.3%) were widowed and 6 (1.2%) were sUeparated. 82 83 400 369 350 300 250 200 Male 150 137 Female Health Workers Y 100 Family Caregiver Patients AR50 0 R Male Female IB Figure 4.3: Bar chart showing the distribution of the respondents b yL gender N Figure 4.3 above shows the bar chart of the distribution ofA the respondents‟ gender (health workers, family caregivers and patients). The figure shoAwsD that 218 or 37.1% respondents were male while 369 or 62.8% of the total respondents wBere female. It can also be seen from figure 3 above that the majority of the respondents use d Ifor this study were females that is the health workers, family caregivers and even the paFtients. The female health workers and family care givers constituted the majority respond enOts. ITY RS VE NIU 83 84 400 371 350 300 250 212 Christianity 200 Islam 150 Others 100 Health Workers Y Family Caregiver 50 R 4 Patients 0 Christianity Islam Others BR A Figure 4.4: Bar Chart showing the distributions of the Respondent s LbyI Religion. Figure 4.4 above shows the bar chart of the distributiAon Nof the respondents by religion (health workers, family caregivers and patients). The Dfigure shows that the adherents of Christianity used for this study were 371 or 63.2% whilAe Muslims were 212 or 36.1%. The figure further shows that the adherents of other rel igIioBns were 4 or 0.6%. The majority of the respondents used for this study were the aFdherents 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 thYe he a Olth workers, family caregivers and the patients used for this study. SI T VE R NIU 84 85 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 prediYction of psychological support was presented in appendix iv. R RA LI B N AD A F I B Y O IT RS IV E UN 85 86 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 Y (A) The Terminally ills: R Table 4.1a: Mean scores of the perception of terminally ill patients (psychRosoAcial 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 I8B5 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 L 96 89 3.35 .65 sorrows. 1.5% 7.9 % 47.5% 44.1% 3 My family really tries to help me. 2 N7 112 81 3.35 .60 1.0% 3.5% 55.4% 40.1% 4 I find peace in my place of worship. 9 A 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. D2 11 120 69 3.27 .60 BA 1.0% 5.4% 59.4% 34.2% 6 I can talk about my problems with my family. I 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 Oof comFfort 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 Y 3.5% 7.9% 62.9% 25.7% 10 I am happy about my relationship Twith other family members. 11 24 111 56 3.05 .78 I 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 S 4.0% 11.9% 62.9% 21.3% 12 I have understanding Rof my present condition. 9 42 102 49 2.95 .70 4.5% 20.8% 50.5% 21.3% 13 I have informatioEn that helps me overcome my difficulties. 12 54 109 27 2.75 .76 5.9% 26.7% 54.0% 13.4% 14 I can faceI mVy problems. 10 74 93 25 2.66 .76 5.0% 36.6% 46.0% 12.4% 15 I havNe 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 UI 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 87 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 Yshare my joy and sorrows” (Mean =3.35), “My family really tires to help me (Mean = 3.35R). “I find peace in my place of worship” (Mean =3.33). “I get the emotional help and supportA I need from my family” (Mean =3. 27). “I can talk about my problems with my family” (RMean = 3.25) “I have a special person who is a real source of comfort to me” (Mean = 3.2I4)B. “There is a special person in my life who cares about my feelings” (Mean = 3.24). “I h aLve support in what I do” (Mean = 3. 11), “I am happy about my relationship with other faNmily members” (Mean =3.05), “My family is willing to help me make decisions” (Mean 3.A01). “I have understanding of my present condition” (Mean =2.95). “I have information thaDt helps me overcome my difficulties” (Mean = 2.75). I can face up to my problems (M AIeBan = 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” (FMean = 2.54). “My friends really try to help me” (Mean 2.53). “I can count on my frien dOs when things go wrong” (Mean 2.45) and lastly by “I feel I am a burden to my friends” (MYean 2.34) respectively weighted mean assumed for 3.14. It must be noted that oInlTy the 202 terminally ill patients‟ respondents used for this study responded to various quesStion statements asked. The mean (X) scores were determined and the weighted average meaRn was calculated. In the table 4.1 above, all the 20 items listed obtained high mean scores oEf between 2.34 and 3.39 out of a maximum score of 4.00. These X scores are high signifyinIgV that the respondents (patients) have positive opinions about the psychosocial supports aNnd family integrations. The weighted X score of 3.14 also attested to the fact that psychUosocial 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 88 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, palliativeY care requires a multidisciplinary approach to be effective. Such approaches include pAsycRhological and social supports as well as family integration in order to achieve effectivRe palliative care services for the terminally- ill persons. In the same vein, Tanchel (2003) staIteBd that, the family of the terminally- ill patient is at the centre of the unit of care and their s uLpports and education are vital because losses suffered by the patients will be experienced Nby the family. Hence, Davies and Steele (1995) argued that, it is important to give family Amembers opportunities to talk as individuals as well as in groups, regarding the palliative Dcare services provided to their loved ones. A The above findings also support the liteIraBture that palliative care is an approach that improves the quality of life of patients facing p roblems associated with life threatening illness and their families through prevention andO relFief. To further buttress the influence of psychosocial support and family integration on Ypall iative care, this study revealed a weighted mean and 3.4 out of maximum mean (X) of 4T.0. this implies that the perceptions of the total respondents were high over the influence of SpsyIchosocial support and family integration. This finding was in line with the submission ofR Morrow (2011). “PalliEative care with supports are activities that aim to enVhance the quality of life of patients and their families who aIre faced with serious debilitating illness, it also focuses on Nclear communication, advance planning and coordination of care” U 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 89 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, doYctors, nurses, social workers, physiotherapists and spiritualist have a stake in their Reffective management to relieve suffering, and improve psychological effect that illness Awould have caused them. This is in line with the submission of Isabelle (2009) that psychBoloRgical support for the terminally- ill should be part of comprehensive programming, and not Ia stand alone service, the interventions should include a variety of approaches such as couns eLlling, family therapy and succession planning. N Perception of palliative care by the terminally ill patieAnts used for this study attested to the fact that opportunity to involve significant others Ain thDeir management relieves them of the burden of feeling dejected and improves their quality of life. IB OF ITY S ER NI V U 89 90 (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 RMeYan 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 A 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% R35.1% 4 The care positively influences His/Her well-being. 15 23 119 B 45 2.96 .80 7.9% 11.4% 58.9%I 22.3% 5 I am really prepared to take care of Him/Her. 10 32 118 42 2.95 .75 5.0% 15.8% N58 L.4% 20.8% 6 His/Her Illness has caused financial constraints. 4 54 95 49 2.94 .77 2.0% 26A.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 AD56 90 36 2.70 .88 9.9% 27.7% 44.6% 17.8% 9 I have sleep pattern disturbance. B34 55 81 32 2.55 .95 I 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. F 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 /HOer. 21 84 82 15 2.45 0.78 10.4% 41.6% 40.6% 7.4% 13 Caring for Him/Her has been convenieYnt. 29 87 73 13 2.35 .80 T 14.4% 43.1% 36.1% 6.4% 14 His/Her illness has caused me a Ifeeling of resentment. 26 91 73 12 2.35 .78 12.9% 45.0% 36.1% 5.9% 15 Palliative care is meant for Sthose nearing end of life. 52 63 56 31 2.33 1.02 R 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 familyV memEbers have dumped His/Her care to me. 43 84 62 13 2.22 .86 21.3% 41.6% 30.7% 6.4% 18 My financIial resources are adequate to pay hospital bill. 36 107 47 12 2.17 .79 N 17.8% 53.0% 23.3% 5.9% UWeighted x = 3.10 90 91 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 performYance (Mean = 3.00). “The care positively influences His/Her wellbeing” (Mean =2.96), “I aRm really prepared to take care of Him/Her” (Mean =2.95), “His/Her illness has RcausAed financial constraints” (Mean =2.94), “I prefer to care for Him/Her in the hospital” (MBean =2.89), “Caring for Him/Her is restrictive” (Mean =2.70), “I have sleep pattern disLturIbance” (Mean 2.55), “He/She exhibits altered behavioural pattern” (Mean =2.51), “I hav e heard of palliative care before” (Mean =2.47), “I get easily tired as a result of cariAng Nfor Him/Her” (Mean = 2.45), “Caring for Him/Her has been convenient for me” (Mean =D2.35), “His/Her illness has caused me a feeling of resentment” (Mean =2.35), “Palliative carAe is meant for those nearing end of life” (Mean =2.33), “I prefer to care for my patient at hBome” (Mean =2.25), “other family members have dumped His/Her care to me” (Mean =2. 2I2) and lastly, by “My financial resources are adequate to pay hospital bill” (Mean =2.17). F Table 4.1b above further show sO the respondents‟ degrees of opinions on the research question two above. It must be mYentioned that 202 family care givers used for this study responded to all the 18-items IquTestion statements raised. The X scores were determined and the weighted average X was caSlculated. In the table, all the 18 items listed obtained high X scores of between 3.09 and 2.17R out of a maximum score of 4.00. These X scores are high, implying that all the respondenEts (family caregivers) perceived caring for their terminally ill relations differently. FoIrV example while 169 respondents agreed that caring for terminally-ill patients have caused thNem emotional disturbance, only 33 respondents disagreed. Again, while 143 responUdents (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 92 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 problemYatic. In connection with the above, Monroe (1999) warns that the caring and diagnosis oAf teRrminally- ill persons is traumatic for everyone, hence the knowledge and understandingR of the crisis are important as the patients‟ realities change within seconds. In the same maInBner, Baker and Teno (2000) stressed that supporting patients and other family members withL redefining requires that health care providers appreciate how difficult it is for familyN m embers to care for their terminally-ill loved ones. In this sense of reality, Kissan & KAenzie (2003) advised that: “when former patterns are no longer feasible, health workers shoDuld help them to consider adjustments or alternatives”. A Again, the nature of palliative care is to eInBsure 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 helpF in health promotion, improves quality of life and ensures dignity (Jeffery, 2003). But T aOnchel (2003) argued that after the supports have been provided by all concerned, evenT if Ythe inevitable (death) happens, the good memory of how the loved one has been takenS caIre of them will help the family member cope better in their bereavement. To buttress the above findings, another family caregiver said that: EEverR since my mother‟s illness started, I had to leave Lagos to Vcome and assist in her care. I never knew what she described I to me as a “lime sized boil” could result into her having a N major operation done. She was counselled and I saw that she had a strong will and was quite positive that all would be well U 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 93 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 mustR be gYiven opportunities to talk as individuals as well as in groups regarding the palliative carAe(s) for their loved ones. To show how important the efforts of the family members are aRt enhancing the palliative care for the ill patients, WHO (2002) stressed that palliative caIreB is an approach that improves the quality of life of patients and their families facing the proLblem associated with life threatening illness. Again, Soyanwo (2004) opined that palliative Ncare is the active holistic care of patients with advanced progressive illness, management ofA pain, provision of psychological, social, spiritual and moral supports. In summary, BolenD (1999) and Canto-Grace (2007) in separate studies made us realise that supports can Acome from varieties of sources for the terminally-ills such as: the family, friends, romIaBntic partner, pets, community ties and co- workers. F Out of the 18-item questionnairOe for the family caregivers, item 4 and 5 carried the highest percentage of 58.9% and 5Y4.4 %, respectively, in response to the statements “ the care positively influences her well-IbTeing and “ I am really prepared to take care of him” followed by item 1 that states “Her aiSlment has caused some emotional disturbance” 56.4%. These are in keeping with the positRive influence of the family. In palliative care, quite a significant number were really prepareEd to take care of their terminally-ill relatives, they are emotionally attached. David & SteeIleV (2000) expressed that wisdom being passed on to their loved ones, helps family members Nto communicate what they might not be able to verbalise to their loved ones (AndeUrshed 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 94 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? Y Table 4.1c: Mean scores of the perception of Health workers on the palliatRive care for the terminally ill patients. A S/N Palliative Care Services SD D A SAR 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% IB64.9% terminal illness. L 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 N91 92 3.32 .70 terminally-ill patients. 2.0% 7.4%A 45.0% 45.5% 4 Patients should be maintained in a pain free state. 13 D13 87 89 3.25 .83 6.4% A 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 B 30 95 71 3.13 .77 degree of psychosocial intervention. F 3I.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 tOerminal 5.9% 14.4% 51.0% 28.7% condition. 8 Addiction to oral morphine is not aY serious issue 17 45 94 46 2.81 .87 given that terminally-ill patieTnts have a short 8.4% 22.3% 46.5% 22.8% time to live. 9 Opening discussions of eSnd oIf 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 aRvailable. 10 Pain at the end of life is an inevitable part of the 44 61 65 32 2.42 .99 dying process. E 21.8% 30.2% 32.2% 15.8% 11 As a rule, tVerminally-ill patients prefer not to talk 34 91 66 11 2.28 .80 about deaIth and dying. 16.8% 45.0% 32.7% 5.4% 12 I doN 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 UThe 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 95 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). “PaYtients should be maintained in a pain free state” (Mean=3.25). “Patients should have theR right to determine their own degree of medical intervention” (Mean=3.13), “Complete paAin relief is a reasonable goal even when the pain is not caused by a terminal conditionR” (Mean=3.01), “Addiction to oral morphine is not a serious issue given that terminally-ilIl pBatients have a short time to live” (Mean=2.81), Opening discussions of end of life care sho uLld be deferred until there is no further effective curative treatment available (Mean=2.61),N “Pain at the end of life is an inevitable part of the dying process” (Mean=2.42) “As a ruDle, tAerminally-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 enAd of life decisions is the patients‟ primary care provider” (Mean=2.25), “Estimation of pai n IbBy a health worker is a more valid measure of pain than patient self report” (Mean=2.0F1), and lastly that “a patient should experience discomfort prior to receiving the next d oOse of pain medications” (Mean=1.92). Table 4.1c above similarly Yshows the respondents degrees of opinions on the research question one. It must be emIphTasised that only the health workers (medical doctors, nurses, physiotherapists and sociaSl workers) responded to various question statements raised. The X scores were determinRed and the weighted average was calculated. All the 15 items listed obtained high XV scEores of between 3.61 and 2.01 out of the maximum score of 4.00. Only item no 15 recordeId X score of 1.9 which is less than average. These X scores are high implying that the healthN workers have positive perceptions about the palliative care provided for the terminUally-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 95 96 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 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‟ Ypain estimation is more valid than patient‟s report. The patient is the most importaAnt Rentity in palliative care and his feelings and worries need to be taken care of. As loRng as he is not unconscious, the ability to express discomfort is a more reliable report thaInB any health workers‟ evaluation. L It could be deduced from these perceptions that palliatiNve care services are essential components of comprehensive package of care for people wiAth terminal illness. World Health Organization (2000) buttressed this that, palliative care isD an important aspect of care that uses team approach to address the needs of the patieBnts Aand their family, including bereavement counselling, if indicated. On the care for the ter mIinally-ill by the health workers, Davies (2000) argued that palliative care professionals doF help patients find ways, to relieve their sense of burden and to provide patients with op pOortunities to talk about their fears and concerns and to consider with whom they want to sYhare worries. It can be summed-up that, the major role of the health workers is to provideI pTsychosocial supports to patients and families facing terminal illness. S Furtherance to Rthis, in-depth interview with a doctor reveals that: VEI The central goal of palliative care is relief of suffering. With advanced illnesses that are life threatening, pain is N imminent for the sufferer (i.e the patient). So relief of U 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. 96 97 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, 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. RY In the same vein, a Nurse reported that: A Patient‟s quality of life has improved tremendously since the advent of palliative care in this health institution. TRhe terminally ill is not to be regarded as an individual LwaIitiBng 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 inNformation about his health, the right to be treated with dignAity the right to relief him of suffering, prevent him fromD agony of pain and accessibility to the different health pArofessionals involved in the patient‟s care. All these would hBelp improve the psychological, social and spiritual well-being Iof the patient and family. The above findings also lay credence Fto the argument of Kearney (2000) that the potential for healings in the face of progressive d iOsease is a potential rooted in the special relationship and positive perception between the Yhealer(s) and the sufferers (patients). Brazil, Howell and Bednard (2005) buttressed thIatT the essence of skilled palliative caregivers is to facilitate the caring process through aS combination of science, presence, positive perception, openness, compassion, mindful aRttention to detail and team work. Palliative cEare is designed to provide the best quality of life for terminally-ills and their family. HenceI, VSoyanwo (2004) argued that: UN “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 97 98 terminally-ill and their families facing the problem associated with life threatening illness, 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 knowY and usually traumatic if the thought haunts after the patient dies, but if the terminally-Aill Rpatient is under the care of a skilled palliative care personnel, the mere fact that both thRe patient and the family care giver are struggling to live in the face of progressive debilitaItiBng disease, the skill and knowledge of the health worker would make him/her care and sup pLort the patients and their family care giver appropriately, thus find meaning and peace in theN face of death. The finding of this study reveals that, palliative carDe reAquires more than prescriptions and ingestion of drugs. It can, however, be said that effectAive palliative care requires that caregivers work cohesively and in collaboration to ensure the physical, social, psychological and spiritual wellbeing of the terminally-ill patients. IB From the responses of the three cateFgories of respondents used for this study, it can be deduced that each category has difYfere n Ot perception of palliative care while the health workers were concerned about the relieTf of symptoms for the terminally ill, management of pain, and giving adequate informatiSon Iabout expectations as well as possible outcome of illness, their quality of life thus becRomes paramount, and this helps to make life bearable for as long as they live. The family caEregiver, however, is seen at the centre of care for their ill family member, the extent to whicIhV the patient can help himself/herself is limited. So the family caregiver does the running aNround 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 healthU 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 98 99 himself/herself at the centre of care, and losses suffered by the patient is experienced in parallel 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 variYables on the dependent variables and it is anchored on research question one (RQ2) whicAh stRates that: To what extent does psychosocial support and family integration improve palliaRtive care service of the terminally ill patients in UCH? The data collected from the respoBndents on this were subjected to multiple regression while the results obtained were presen teLd iIn tables 4.2a and 4.2b followed by detailed discussion. AN Table 4.2a: Joint prediction of psychosocial support aDnd family integration on palliative care of terminally ill patients. BA Model Sum of squares DFF I Mean F Sig. square Regression 311.661 O12 25.972 25.245 .000 Residual 194.438 ITY 189 1.029 Total 506.0S99 201 R= .785 R 2 R = .616 2 VE Adj R = .591I UN 99 100 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 .000Y Family Integration -.303 .104 - . 755 -2.914 AR.004. R Interpretation and discussion IB It was shown in the table 4.2a above that the joint effect oLf the three independent variables of psychological support, social support and faAmilyN integration was significant 2 2(F(12.189)=25.245 ; R=.785 R = .616; Adj. R =.591; p< D0.5). 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 tIhBat p Aalliative care process in UCH, to a large extent, is being determined by the combinatio n of the three independent variables. Also, the result of table 4.2b shows the relative contribFution of each of the three independent variables on the palliative care of terminally-ill p aOtients as follows: social support (β= .966, p< .05); psychological support (β= .376, p