Ambiguous diagnosis, futile treatments and temporary recovery: meanings of medical treatment among HIV/AIDS family caregivers providing care without ARVs

Abstract

The capacity of countries with high HIV and AIDS prevalence to provide antiretroviral treatment and care for all people who need support remains a public health challenge. In Lesotho, there are improvements in this area but the high proportion of people who need ART yet they do not receive treatment suggests that many HIV-infected people continue to depend on medicines that treat opportunistic infections. The objective of the article is to explore caregivers' experiences with diagnostic procedures and outcomes, prescriptions and treatment outcomes when ARVs were unavailable. A phenomenological design using in-depth face-to-face interviews was used to obtain the experiences of 21 family caregivers about caregiving, including access to and use of medical treatments. Caregivers' experiences indicate that most of the consulted health professionals provided vague and inconsistent diagnoses while the medication they prescribed failed to treat most of the symptoms. Unavailability of medicines that control pain and symptoms effectively continues to be a prominent feature of HIV and AIDS home-based caregiving in Lesotho. It is recommended that health professionals should facilitate disclosure of HIV diagnosis to family caregivers to assist them to understand unstable treatment outcomes; and policy makers should strengthen home-based care by developing policies that integrate palliative care into HIV and AIDS care.