The Psychosocial and Economic Effects of Caring for Terminally Ill Patients: The Case of Hospice Africa Uganda
DOI:
https://doi.org/10.17140/PMHCOJ-7-142Keywords:
Psychosocial, Economic effects, Caregivers, Terminally-ill, PatientsAbstract
Introduction
Giving care to a patient at the end-of-life can be a challenging experience. The responsibilities of caregiving may include executing complex physical and mental tasks, financial planning, patient care, decision-making, emotional support and coordination of care. This mixed-methods observational study aims to identify the psychosocial and economic effects of caregiving for terminally-ill patients by carers on the Hospice Africa Uganda Kampala program. It used both quantitative and qualitative data of caregivers caring for terminally-ill patients attending Hospice Africa Uganda Kampala. Simple random sampling was conducted to select caregivers who were invited to participate in the study.
Results
Results indicate that the majority of patients who were receiving palliative care (60.9%, 103) had been diagnosed with cancer. Most participants (62%, n=105) had spent less than one year caring for their patients, while (18%, n=31) were cared for between 1-5 years. Our results show that the responsibility of caregiving has significant effects on the psychosocial well-being of caretakers. In particular, it reduced the amount of time they spent attending social gatherings and caring for their children, their religious commitment (p<0.05), as well as their level of fatigue and exhaustion (p<0.05), and negatively impacted job finding activities.
Conclusion
Terminal caregiving has significant effects on the psychosocial well-being and incomes of caretakers, and their ability to find a job alongside caring for the patient. Based on these findings, it is therefore recommended that caregivers be given ongoing sup-port to help them provide care to their own family members and patients with life limiting illnesses early in the disease trajectory.
References
He Leow MQ, Chan SWC. Factors affecting caregiver burden of terminally ill adults in the home setting - A systematic review. JBI Libr Syst Rev. 2011; 9(45): 1883-1916. doi: 10.11124/01938924- 201109450-00001
Stajduhar K, Funk L, Toye C, Grande G, Aoun S, Todd C. Part 1: Home-based family caregiving at the end of life: A comprehensive review of published quantitative research (1998-2008). Palliat Med. 2010; 24(6): 573-593. doi: 10.1177/0269216310371412
Payne S, Smith P, Dean S. Identifying the concerns of infor-mal carers in palliative care. Palliat Med. 1999; 13(1): 37-44. doi: 10.1191/026921699673763725
Ssengonzi, R. The plight of older persons as caregivers to people infected/affected by HIV/AIDS: Evidence from Uganda. J Cross Cult Gerontol. 2007; 22: 339-353. doi: 10.1007/s10823-007-9043-5
van Deventer C, Wright A. The psychosocial impact of caregiv-ing on the family caregivers of chronically ill AIDS and/or HIV patients in home-based care: A qualitative study in Zimbabwe. S Afr J HIV Med. 2010; 18(1): a718. doi: 10.4102/sajhivmed.v18i1.718
Emanuel EJ, Fairclough DL, Slutsman J, Alpert H, Baldwin D, Emanuel LL. Assistance from family members, friends, paid care-givers, and volunteers in the care of terminally ill patients. N Engl J Med. 1999; 341(13): 956-963. doi: 10.1056/NEJM199909233411306
Aoun SM, Kristjanson LJ, Hudson PL, Currow DC, Rosen-berg JP. The experience of supporting a dying relative: Reflections of caregivers. Progress in Palliative Care. 2005; 13(6): 319-325. doi: 10.1179/096992605X75930
Harding R, Higginson I. Working with ambivalence: Informal caregivers of patients at the end of life. Support Care Cancer. 2001; 9: 642-645. doi: 10.1007/s005200100286
Funk L, Stajduhar K, Toye C, Aoun S. Home-based family care-giving at the end of life: A comprehensive review of published quantitative research (1998–2008). Palliat Med. 2010; 24(6): 594- 607. doi: 10.1177/0269216310371411
Schulz R, Mendelsohn AB, Haley WE, Mahoney D, Allen RS, Zhang S, et al. End of life care and the effects of bereavement on family caregivers of persons with dementia. N Engl J Med. 2004; Original Research | Volume 7 | Number 1| Buyinza N 349(20): 1936-1942. doi: 10.1056/NEJMsa035373
Candy B, Jones L, Williams R, Tookman A, King M. Interven-tions for supporting informal caregivers of patients in the terminal phase of a disease (Protocol). Cochrane Database Syst Rev. 2011; (6): CD007617. doi: 10.1002/14651858.CD007617.pub2
Macleod R. Setting the context: What do we mean by psycho-social care in palliative care? In: Lloyd-Williams M, ed. Psychosocial Issues in Palliative Care. New York, USA: Oxford University Press; 2008.
Olivia D, Myer G. Feeling Better: Psychosocial Care in Specialist Pal-liative Care. London, UK: National Council for Hospice and Spe-cialist Palliative Care Services (NCHSPCS); 1997.
Andershed B. Relatives in end-of-life care -- part 1: A system-atic review of the literature the five last years, January 1999-Febru-ary 2004. J Clin Nurs. 2006; 15(9): 1158-1169. doi: 10.1111/j.1365- 2702.2006.01473.x
Diwan S, Hougham GW, Sachs GA. Strain experienced by caregivers of dementia patients receiving palliative care: Find-ings from the Palliative Excellence in Alzheimer Care Efforts (PEACE) Program. J Palliat Med. 2004; 7(6): 797-807. doi: 10.1089/ jpm.2004.7.797
Cho E. A proposed theoretical framework addressing the ef-fects of informal caregivers on health-related outcomes of elderly recipients in home healthcare. Asian Nurs Res (Korean Soc Nurs Sci). 2007; 1(1): 23-34. doi: 10.1016/S1976-1317(08)60006-7
Merriman A. Audacity to Love: The Story of Hospice Africa. Dublin, Ireland: Irish Hospice Foundation; 2010: doi: 10.1002/PON.2024
Stajduhar K, Cohen R. Family caregiving in the home. In: Fam-ily Carers and Palliative Care. In: Hudson P, Payne S, ed. Oxford, United Kingdom: Oxford University Press; 2009.
Yabroff KR, Davis WW, Lamont EB, Fahey A, Topor M, Brown ML, et al. Patient time costs associated with cancer care. J Natl Cancer Inst. 2007; 99(1): 14-23. doi: 10.1093/jnci/djk001
Weitzner MA, Mcmillan SC, Jacobsen PB. Family caregiver quality of life: Differences between curative and palliative cancer treatment settings. J Pain Symptom Manage. 1999; 17(6): 418-428. doi: 10.1016/s0885-3924(99)00014-7
Stenberg U, Ruland CM, Miaskowski C. Review of the litera-ture on the effects of caring for a patient with cancer. Psycho-oncolo-gy. 2010; 19: 1013-1025. doi: 10.1002/pon.1670
Fisher D, Briggs H, Carers Association of Australia. Warning: Caring is a health hazard: Results of the 1999 national survey of carer health and wellbeing. Australia: Carers Association of Aus-tralia; 2000.
Schofield HL, Herrman HE, Bloch S. A profile of Australian family caregivers: Diversity of roles and circumstances. Aust N Z J Public Health. 1997; 21: 59-66.
Northouse LL, Katapodi MC, Song L, Zhang L, Mood DW. In-terventions with family caregivers of cancer patients: Meta-analysis of randomized trials. CA Cancer J Clin. 2010; 60(5): 317-339. doi: 10.3322/caac.20081
Taylor EJ. Nurses caring for the spirit: Patients with cancer and family caregiver expectations. Oncol Nurs Forum. 2003; 30 (4): 585- 590. doi: 10.1188/03.ONF.585-590
Fast J. Caregiving for Older Adults with Disabilities: Present Submit your article to this journal | https://openventio.org/submit-manuscript/ Costs, Future Challenges. IRPP Study. 2015. Web site. https:// irpp.org/wp-content/uploads/2015/12/study-no58.pdf. Ac-cessed on June 15, 2021.
Armstrong P, Clow B, Grant K, Haworth-Brockman M, Jack-son B, Pederson A, et al. Thinking Women and Health Care Reform in Canada. Toronto, Canada: Women’s Press: 2007;
Research on Aging, Policies and Practice. Employment conse-quences of family/friend caregiving in Canada. Web site. https:// rapp.ualberta.ca/wp-content/uploads/sites/49/2018/04/2011E mploymentConsequencesFFCaregiving.pdf. 2011.
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