TY - JOUR
T1 - Balancing disfigurement and fear of disease progression
T2 - Patient perceptions of HIV body fat redistribution
AU - Reynolds, Nancy R.
AU - Neidig, J. L.
AU - Wu, A. W.
AU - Gifford, A. L.
AU - Holmes, W. C.
PY - 2006/10/1
Y1 - 2006/10/1
N2 - 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 health 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.
AB - 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 health 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.
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U2 - 10.1080/09540120500287051
DO - 10.1080/09540120500287051
M3 - Article
C2 - 16971273
AN - SCOPUS:33748684776
VL - 18
SP - 663
EP - 673
JO - AIDS Care - Psychological and Socio-Medical Aspects of AIDS/HIV
JF - AIDS Care - Psychological and Socio-Medical Aspects of AIDS/HIV
SN - 0954-0121
IS - 7
ER -