Stressors and resources of caregivers of patients with incurable progressive illness in sub-saharan africa

Qualitative Health Research

Volumn 24, Issue 3, 2014, Pages 317-328

  Streid, Jocelyn ^a   Harding, Richard ^a   Agupio, Godfrey ^b   Dinat, Natalya ^c   Downing, Julia ^d   Gwyther, Liz ^e   Ikin, Barbara ^f   Mashao, Thandi ^g   Mmoledi, Keletso ^c   Moll, Anthony P ^h   Sebuyira, Lydia Mpanga ^b   Higginson, Irene J ^a   Selman, Lucy ^a  

^a KING'S COLLEGE LONDON   (United Kingdom)

^b Hospice Africa Uganda   (Uganda)

^c UNIVERSITY OF THE WITWATERSRAND   (South Africa)

^d AFRICAN PALLIATIVE CARE ASSOCIATION   (Uganda)

^e Hospice Palliative Care Association of South Africa   (South Africa)

^f South Coast Hospice   (South Africa)

^g UNIVERSITY OF CAPE TOWN   (South Africa)

^h Philanjalo Hospice ^*  (South Africa)

Author keywords

Africa, South; Africa, sub Saharan; caregivers caregiving; coping and adaptation; end of life issues; families, caregiving; illness and disease, life threatening terminal; palliative care; psychosocial issues; quality of life; relationships; research, qualitative

Indexed keywords

ADAPTIVE BEHAVIOR; ADULT; AGED; CAREGIVER; CLINICAL TRIAL; DISEASE COURSE; FEMALE; HUMAN; INTERVIEW; MALE; MENTAL STRESS; MIDDLE AGED; MULTICENTER STUDY; PALLIATIVE THERAPY; PSYCHOLOGY; QUALITATIVE RESEARCH; SOUTH AFRICA; UGANDA;

ADAPTATION, PSYCHOLOGICAL; ADULT; AGED; CAREGIVERS; DISEASE PROGRESSION; FEMALE; HUMANS; INTERVIEWS AS TOPIC; MALE; MIDDLE AGED; PALLIATIVE CARE; QUALITATIVE RESEARCH; SOUTH AFRICA; STRESS, PSYCHOLOGICAL; UGANDA;

EID: 84896762984     PISSN: 10497323     EISSN: 15527557     Source Type: Journal    
DOI: 10.1177/1049732314523682     Document Type: Article

References (33)

1. Bainbridge D., Krueger P., Lohfeld L., Brazil K.. Stress processes in caring for an end-of-life family member: Application of a theoretical model. Aging andamp; Mental Health. 2009 ; 13: 537-545
2. Braithwaite V.. Caregiving burden: Making the concept scientifically useful and policy relevant. Research on Aging. 1992 ; 14: 3-27
3. Brouwer C. N. M., Lok C. L., Wolffers I., Sebagalls S.. Psychosocial and economic aspects of HIV/AIDS and counselling of caretakers of HIV-infected children in Uganda. AIDS Care. 2000 ; 12: 535-540
4. Emanuel R. H., Emanuel G. A., Reitschuler E. B., Lee A. J., Kikule E., Merriman A., Emanuel L. L.. Challenges faced by informal caregivers of hospice patients in Uganda. Journal of Palliative Medicine. 2008 ; 11: 746-753
5. Funk L., Stajduhar K. I., Toye C., Aoun S., Grande G. E., Todd C. J.. Part 2: Home-based family caregiving at the end of life: A comprehensive review of published qualitative research (1998-2008). Palliative Medicine. 2010 ; 24: 594-607
6. Grant L., Downing J., Namukwaya E., Leng M., Murray S.. Palliative care in Africa since 2005: Good progress, but much further to go. British Medical Journal Supportive andamp; Palliative Care. 2011 ; 1: 118-122
7. GrbichC.MaddocksI.ParkerD. (2000). Communication and information needs of caregivers of adult family members at diagnosis and during treatment of terminal cancer. Progress in Palliative Care, 8, 345-350. Retrieved from http://espace.library.uq.edu.au/view/UQ:253279
8. Gysels M., Pell C., Straus L., Pool R.. End of life care in sub-Saharan Africa: A systematic review of the qualitative literature. BMC Palliative Care. 2011 ; 10: 6-15
9. Harding R., Higginson I., Selman L., Powell R. A., Namisango E., Downing J.,... Gwyther L.. Research into palliative care in sub-Saharan Africa. Lancet Oncology. 2013 ; 14: 183-188
10. Harding R., Powell R. A., Kiyange F., Downing J., Mwangi-Powell F.. Provision of pain- and symptom-relieving drugs for HIV/AIDS in sub-Saharan Africa. Journal of Pain and Symptom Management. 2010 ; 40: 405-415
11. Hauser J. M., Kramer B. J.. Family caregivers in palliative care. Clinics in Geriatric Medicine. 2004 ; 20: 671-688
12. Hebert R., Arnold R., Schulz R.. Improving well-being in caregivers of terminally ill patients. Making the case for patient suffering as a focus for intervention research. Journal of Pain and Symptom Management. 2007 ; 34: 539-546
13. Hosegood V., Preston-Whyte E., Busza J., Moitse S., Timaeus I. M.. Revealing the full extent of households' experiences of HIV and AIDS in rural South Africa. Social Science andamp; Medicine. 2007 ; 65: 1249-1259
14. Joint United Nations Program on HIV/AIDS. (2008) Report on the global AIDS epidemic. Geneva: World Health Organisation. Retrieved from www.unaids.org/en/media/unaids/contentassets/dataimport/pub/globalreport/2008/ jc1510-2008globalreport-en.pdf
15. Kikule E.. A good death in Uganda: Survey of needs for palliative care for terminally ill people in urban areas. British Medical Journal. 2003 ; 327 (7408). 192-194
16. Lazarus R. S., Cohen J. B. Human behavior and environment. Altman I. Wohlwill J. F., ed. New York: Plenum ; 1977: 89-127.
17. Moore A. R., Henry D.. Experiences of older informal caregivers to people with HIV/AIDS in Lome, Togo. Ageing International. 2005 ; 30: 147-166
18. Murray S., Grant E., Grant A., Kendall M.. Dying from cancer in developed and developing countries: Lessons from two qualitative interview studies of patients and their carers. British Medical Journal. 2003 ; 326 (7385). 368-371
19. Onyango R. O.. Home-based care: Are women caregivers at risk? A study of Busia and Teso districts in western Kenya. Education for Health. 2009 ; 22: 294
20. Osse B. H., Vernooij-Dassen M. J., Schade E., Grol R. P.. Problems experienced by the informal caregivers of cancer patients and their needs for support. Cancer Nursing. 2006 ; 29: 378-388
21. Pearlin L. I., Mullan J. T., Semple S. J., Skaff M. M.. Caregiving and the stress process: An overview of concepts and their measures. Gerontologist. 1990 ; 30: 583-594
22. Powell R.. Improving palliative care in Africa. British Medical Journal. 2008 ; 337: 1123-1124
23. Powell R. A., Hunt J.. Family care giving in the context of HIV/AIDS in Africa. Progress in Palliative Care. 2012 ; 21: 12-21
24. Proot I. M., Abu-Saad H. H., Crebolder H. F., Goldsteen M., Luker K. A., Widdershoven G. A.. Vulnerability of family caregivers in terminal palliative care at home: Balancing between burden and capacity. Scandinavian Journal of Caring Sciences. 2003 ; 17: 113-121
25. QSR International Pty Ltd. (2010). NVivo qualitative data analysis software (Version 9) [Computer software]. Retrieved from www.qsrinternational. com
26. SelmanL.HardingR.AgupioG.FoxP.GalimakaD.MmolediK.HigginsonI. (2010). Spiritual care recommendations for people receiving palliative care in sub-Saharan Africa. Cicely Saunders International. King's College London. Retrieved from www.csi.kcl.ac.uk/files/ Spiritual%20care%20recommendations%20for%20palliative%20care%20in%20Africa.pdf
27. Skovdal M., Ogutu V. O., Aoro C., Campbell C.. Young caregivers as social actors: Coping strategies of children caring for ailing or ageing guardians in western Kenya. Social Science andamp; Medicine. 2009 ; 69: 587-595
28. Tsigaroppoulos T., Mazaris E., Chatzidarellis E., Skolarikos A., Varkarakis I., Deliveliotis C.. Problems faced by relatives caring for cancer patients at home. International Journal of Nursing Practice. 2009 ; 15: 1-6
29. World Bank. (2011). The growing danger of non-communicable diseases; Acting now to reverse course. Retrieved from http://siteresources.worldbank.org/ HEALTHNUTRITIONANDPOPULATION/Resources/Peer-Reviewed-Publications/ WBDeepeningCrisis.pdf
30. World Health Organization. (2005). A community health approach to palliative care for HIV/AIDS and cancer patients in sub-Saharan Africa. Geneva: Author. Retrieved from www.who.int/cancer/publications/community-health- approach/en/.
31. World Health Organization. (2006a). WHO definition of palliative care. Geneva: Author. Retrieved from www.who.int/cancer/palliative/definition/en/
32. World Health Organization. (2006b). World health report. Geneva: Author. Retrieved from www.who.int/cancer/publications/community-health-approach/en/
33. World Health Organization. (2011). Progress report 2011: Global HIV/AIDS response. Geneva: Author. Retrieved from www.who.int/hiv/pub/progress- report2011/en/