Confidentiality or continuity? Family caregivers' experiences with care for HIV/AIDS patients in home-based care in Lesotho.
In the context of poor access to antiretroviral therapies in sub-Saharan Africa, the minimum treatment package intended to treat opportunistic infections common with HIV infection is inadequate but appealing, since it presumes universal coverage of medical care for patients living with HIV and AIDS. The overall objective of this study was to analyse the challenges which family caregivers encountered in home-based care when they tried to access medical treatment for home-based AIDS patients in the context of confidentiality and limited medical care. A qualitative study using in-depth interviews with a sample of 21 family caregivers -16 females and 5 males aged between 23 and 85 years was conducted with the assistance of health personnel in two hospitals in Lesotho. Using the concept of continuity of care, this article discusses the experiences of family caregivers about home care, including their experiences of adherence to confidentiality by health care professionals and non-disclosure of AIDS as the context of illness, the circumstances under which the caregivers initiated caregiving and sought medical care, and how these factors could be stressors in caregiving. There was continuity of care where the caregivers obtained hospital support. However, when confidentiality was adhered to the caregivers were frustrated by lack of information, disrupted treatment, exclusion of their perspectives in medical care, failure to secure hospitalisation, ambiguous goals and non-responsiveness, so that continuity of care was jeopardised. Thus it can be concluded that professional-assisted disclosure benefited the patients because it facilitated continuity of care through the caregivers.
Makoae
Mokhantso G
MG
Child, Youth, Family and Social Development programme of the Human Sciences Research Council. mmakoae@hsrc.ac.za
Jubber
Ken
K
D017088:AIDS-Related Opportunistic Infections / Q000188:drug therapy / Q000523:psychology; D000328:Adult; D000368:Aged; D000369:Aged, 80 and over; D019380:Anti-HIV Agents / Q000600:supply & distribution; D017028:Caregivers / Q000941:ethics* / Q000523:psychology / Q000706:statistics & numerical data; D003219:Confidentiality / Q000941:ethics* / Q000523:psychology; D003266:Continuity of Patient Care / Q000941:ethics*; D005195:Family Relations; D005260:Female; D015658:HIV Infections / Q000523:psychology / Q000628:therapy*; D015276:Health Care Rationing / Q000941:ethics; D006701:Home Nursing / Q000941:ethics* / Q000523:psychology / Q000706:statistics & numerical data; D006760:Hospitalization; D006801:Humans; D007927:Lesotho; D008297:Male; D008875:Middle Aged; D010342:Patient Acceptance of Health Care / Q000523:psychology* / Q000706:statistics & numerical data; D010817:Physician-Patient Relations / Q000941:ethics; D011287:Prejudice; D014342:Truth Disclosure / Q000941:ethics*
D019380:Anti-HIV Agents