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Hospice Care Needs Assessment

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Hospice Care Needs Assessment
Assessing the Need for Hospice Care and Hospice Facilities for Terminally Ill AIDS Patients in Namibia

By:

Karin Nasheya

ACKNOWLEDGEMENTS

The researcher would like to express gratitude and appreciation to:

Individuals (and their families) who participated in the study and who gave so generously of their time and thoughts about their experience of caring for terminally ill AIDS patients, given the sensitivity of the subject.

Research assistants (data collectors) who worked under challenging conditions to find individuals who are willing take part in the study and complete the questionnaires.

Support received from family and friends during this challenging period.

ABSTRACT

This study aimed at assessing whether there was a need for hospice are and hospice facilities for terminally ill AIDS patients in Namibia. The study was conducted in the Khomas region of Namibia. A total of 100 people were successfully interviewed from key informants, namely, individuals who have directly taken care of or participated in taking care of at least one terminally ill AIDS patient. This study group was selected because they posses the knowledge and experience of taking care of a terminally ill patient. The subjects responded to various questions related to the needs of terminally AIDS patients such as whether they received training, external support, remuneration, patient’s problems, major challenges encountered, tasks performed, pressing needs, and preferred facility for taking care of terminally ill AIDS patients. The study concludes that cares are overwhelmed by the burden of taking care of terminally ill AIDS patients without sufficient training, assistance, and as well as availability of specialized services or facilities to assist them. The majority indicated they would welcome the introduction of hospice services and hospice facilities to take care of or assist in the taking care of terminally ill AIDS patients.

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References: 1. Christakis, N.A. & Escarce, J.J. (1996). Survival of Medicare patients after enrollment in hospice programs. The New England Journal of Medicine, 335, 172-202. 2. Cohen, s. r. et. al. (2001). Changes in quality of life following admission to palliative care units. McGill University. Canada 3 6. Diana Fund. Palliative Care Initiative. The Diana, Princess of Wales, Memorial Fund Promotional Information, 2001. 9. Finlay, I. G. et. al. (2002). Palliative Care in hospital, hospice, at home: results from a systemic review. University of Wales College of Medicine. UK 10 11. Gilks, C. et al. (1998). Sexual health and health care: Care and support for people with HIV/AIDS in resource-poor settings. Department of International Development (DFID), London. 12. Healthlink (formally AHRTAG) AIDS Action 41, June-August, 1998 13 14. Kikule, E. (2003). A good death in Uganda: survey of needs for palliative care for terminally ill people in urban areas. British Medical Journal 2003; 327:192-194. 15. Kraus. P, at. al. (2002). HIV infection and its implications for palliative care in South Africa. Progress in Palliative Care 2002; 10(4):168-171. 16. Loke, A. Y. et. al. (2003). The Difficulties Faced by Informal Caregivers of Patients With Terminal Cancer in Hong Kong and the Available Social Support. MEDLINE Abstracts: Family Caregivers in Palliative Care. Cancer Nurse. 2003; 26:276-283 17 18. Merriman A. (May-June 2002) Hospice Uganda - A model palliative care initiative in Africa: an interview with Dr. Anne Merriman. Palliative Care for People Living with HIV/AIDS, a special edition of Innovations in End-of-Life Care 4(3). 19. Ministry of Health and Social Services (2000). Epidemiological Report on HIV/AIDS for the 2000. Namibia 20 21. Ministry of Health and Social Services (2000). Draft Policies and Guidelines for HIV/AIDS Prevention and Control. Namibia 22 23. Ministry of Health and Social Services (1999). The National Strategic Plan on HIV/AIDS (Medium Term Plan). Namibia 24 25. National Hospice Organization (1996). You matter to the last moment of your life. 1901 N. Moore Street, Suite 901, Arlington, VA 22209. 26. Ngalula, J. at. al. (2002). Health service use and household expenditure during terminal illness due to AIDS in rural Tanzania. Tropical Medicine and International Health 2002; 7(10):873-877. 27. Newton, M. et. al (2002). Concerns of Hospice Patient Caregiver. MEDLINE Abstracts: Family Caregivers in Palliative Care. ABNF J. 2002; 13:140-144 28 29. Quin, S. et.al (2005) Report on a Research Study of the Palliative Care Needs of Children in Ireland. University College, Dublin 30 31. Scimeca, L. & Buggs, R. (1996). Therapeutic recreation for the terminally ill: Interventions and illness specific recommendations. American Therapeutic Recreation Association Annual Conference, San Francisco. CA. 32. SNAP (1998) Needs Assessment in Primary Care: A rough Guide. Scottish Needs Assessment Programme 33 34. Stevens, et al (1997). Health Care Needs Assessment: the epidemiologically based needs assessment reviews. Radcliffe Medical Press. Oxford and New York 35 36. Thielemann, P. (2000). Educational needs of home caregivers of terminally ill patients: Literature review. July/August 2000; pages 253-257 37 38. Weiss & Thurn, (1990). Perceived effects of a training program to enhance family member 's ability to facilitate reminiscing with older disoriented residents. Therapeutic Recreation Journal, 24, 18-31. 41. World Health Organization. (1990) Cancer Pain Relief and Palliative Care. Geneva: WHO. 44. World Health Organization (2002c) National Cancer Control Programmes: Policies and Material Guidelines. 2nd Edition. WHO, Geneva APPENDIX 1
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