Balancing disfigurement and fear of disease progression: Patient perceptions of HIV body fat redistribution.

TitleBalancing disfigurement and fear of disease progression: Patient perceptions of HIV body fat redistribution.
Publication TypeJournal Article
Year of Publication2006
AuthorsReynolds NR, Neidig JL, Wu AW, Gifford AL, Holmes WC
JournalAIDS Care
Date Published2006 Oct
KeywordsAdipose Tissue, Adult, Aged, Antiretroviral Therapy, Highly Active, Body Image, Disease Progression, Fear, Female, Focus Groups, HIV Infections, HIV-Associated Lipodystrophy Syndrome, Humans, Male, Middle Aged, Self Concept, Stress, Psychological, United States

This study was conducted to identify and describe the perceived morphologic changes of body fat redistribution and related distress among persons taking combination antiretroviral therapy. Six focus group interviews were conducted in four different US cities with men and women (n = 58) who reported antiretroviral-related symptoms of body fat loss and/or gain. Interview data were audiotaped, transcribed verbatim and systematically analysed using inductive techniques. Physical discomfort and impairment and psychological and social distress were reported across sex, sexual orientation and geographic subgroups. While participants acknowledged that antiretroviral drugs were keeping them alive, there was tension between the desire for life-sustaining treatment and optimal quality of life. Some participants engaged in harmful heath behaviours in an attempt to control bodily changes (e.g. non-adherence to antiretroviral regimen). Participants feared that fat loss represented disease progression and worried that visible changes would lead to unintentional disclosure of their HIV status. Although a potential source of support, healthcare providers were commonly perceived as ignoring and, in so doing, discrediting patient distress. Participants recognised the limitations of current lipodystrophy treatment options, yet a cure for the syndrome seemed less important to them in the short term than simply being listened to and the powerful, but oblique sources of distress addressed.

Alternate JournalAIDS Care
PubMed ID16971273
Grant ListAI01482 / AI / NIAID NIH HHS / United States
AI027670 / AI / NIAID NIH HHS / United States
AI038868 / AI / NIAID NIH HHS / United States
AI25924 / AI / NIAID NIH HHS / United States
RR-00035 / RR / NCRR NIH HHS / United States
U01 AI27668 / AI / NIAID NIH HHS / United States