Patients and family care givers' experiences around highly active antiretroviral therapy (HAART)

Abstract

Even with advances in the medical management of HIV/AIDS, it remains an important cause of morbidity and mortality. Network members are a source of support and may be designated as the patient's surrogate therapeutic decision maker. However, little is known about the role of caregivers regarding highly active antiretroviral therapy (HAART) and adherence to medication, especially among low income and medically underserved HIV-infected individuals. The objective of this analysis was to explore patients and their caregivers' understanding, insight, and perceptions of HAART. This was a qualitative study conducted in an urban teaching hospital in the Bronx, NY, consisting of 144 adults with advanced HIV/AIDS and their informal/familial caregivers. Patients and caregivers completed in-depth interviews and brief questionnaires. The data were analyzed using standard qualitative techniques. Themes related to HAART efficacy, side effects, and adherence were identified in the discussions with both patients and their care providers. Looking for consistencies and discordant reports of patients–caregivers dyadic experience with HAART and their association with healthcare sentiment, it was found that the accounts of both members of the dyad were more likely to reflect positive feelings about the patient's healthcare experience when they shared perceptions about the treatment, and were more likely to have a negative viewpoint when the dyad was discordant about treatment. These findings support the importance for HIV healthcare providers to include both patients and their caregivers in discussions about HAART, in order to improve their understanding of and satisfaction with the medication, and, to ultimately contribute to patients' adherence. The study also suggests that healthcare teams may enhance dialog with patients and caregivers to create therapeutic decisions to accommodate the priorities and values of the patient and their family. Clinical, educational, and evaluating tools need to be further developed and evaluation to facilitate this process.

Keywords:

• HIV
• AIDS
• end of life
• qualitative research
• HAART

Acknowledgements

This study was funded by a Grant from the National Institute of Nursing Research PI: VH Raveis (RO1-NR008343).