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

• Published in: AIDS care Vol. 18; no. 7; pp. 663 - 673
• Main Authors: Reynolds, N. R., Neidig, J. L., Wu, A. W., Gifford, A. L., Holmes, W. C.
• Format: Journal Article
• Language: English
• Published: Abingdon Taylor & Francis Group 01-10-2006; Taylor & Francis; Taylor & Francis Ltd
• Subjects: Adipose Tissue - pathology; Adult; Aged; AIDS/HIV; Antibiotics. Antiinfectious agents. Antiparasitic agents; Antiretroviral drugs; Antiretroviral therapy; Antiretroviral Therapy, Highly Active - psychology; Antiviral agents; Biological and medical sciences; Body; Body fat; Body Image; Dermatology; Disease Progression; Diseases; Drug therapy; Emotional disorders; Fear; Female; Focus Groups; Fundamental and applied biological sciences. Psychology; HIV; HIV Infections - drug therapy; HIV Infections - psychology; HIV-Associated Lipodystrophy Syndrome - drug therapy; HIV-Associated Lipodystrophy Syndrome - pathology; HIV-Associated Lipodystrophy Syndrome - psychology; Human body; Human immunodeficiency virus; Humans; Illness and personality; Illness, stress and coping; Interviews; Male; Medical sciences; Medical treatment; Middle Aged; Oils & fats; Patients; Perception; Perceptions; Pharmacology. Drug treatments; Psychological effects; Psychology and medicine; Psychology. Psychoanalysis. Psychiatry; Psychology. Psychophysiology; Self Concept; Skin involvement in other diseases. Miscellaneous. General aspects; Stress, Psychological - etiology; U.S.A; United States - epidemiology; United States; North America; America; Disease development; Social environment; Affect affectivity; Skin disease; Antiretroviral agent; Toxicity; Mental health; Antiviral; Public health; Human; Immunopathology; Body perception; Drug combination; AIDS; Emotion emotionality; Immune deficiency; Infection; Fear; Chemotherapy; Treatment; Psychological distress; Viral disease; Lipodystrophy; Adipose tissue disorders; Focus group
• ISSN: 0954-0121; 1360-0451
• DOI: 10.1080/09540120500287051

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.