This article is part of a series on HIV/AIDS and Disability.

Research

Putting episodic disability into context: a qualitative study exploring factors that influence disability experienced by adults living with HIV/AIDS

Kelly K O'Brien^1,2,7 , Aileen M Davis^1,3 , Carol Strike^4,5 , Nancy L Young^1,6 and Ahmed M Bayoumi^1,2

¹  Department of Health Policy, Management and Evaluation, Faculty of Medicine, University of Toronto, Ontario, Canada

²  Centre for Research on Inner City Health, The Keenan Research Centre in the Li Ka Shing Knowledge Institute, St Michael's Hospital, Toronto, Ontario, Canada

³  Division of Health Care and Outcomes Research and Arthritis and Community Research and Evaluation Unit, Toronto Western Research Institute, Toronto, Ontario, Canada

⁴  Department of Psychiatry, University of Toronto, Toronto, Ontario, Canada

⁵  Centre for Addiction and Mental Health, Toronto, Ontario, Canada

⁶  School of Rural and Northern Health, Laurentian University, Sudbury, Ontario, Canada

⁷  Faculty of Health Sciences, School of Rehabilitation Science, McMaster University, 1400 Main Street West, Room 403, Hamilton, Ontario, Canada

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Journal of the International AIDS Society 2009, 12:30doi:10.1186/1758-2652-12-30

Published:	9 November 2009

Abstract

Background

An increasing number of individuals may be living with the health-related consequences of HIV and its associated treatments, a concept we term disability. However, the context in which disability is experienced from the HIV perspective is not well understood. The purpose of this paper is to describe the contextual factors that influence the experiences of disability from the perspective of adults living with HIV.

Methods

We conducted four focus groups and 15 face-to-face interviews with 38 men and women living with HIV. We asked participants to describe their health-related challenges, the physical, social and psychological areas of their life affected, and the impact of these challenges on their overall health. We also conducted two validity check focus groups with seven returning participants. We analyzed data using grounded theory techniques to develop a conceptual framework of disability for adults living with HIV, called the Episodic Disability Framework.

Results

Contextual factors that influenced disability were integral to participants' experiences and emerged as a key component of the framework. Extrinsic contextual factors included social support (support from friends, family, partners, pets and community, support from health care services and personnel, and programme and policy support) and stigma. Intrinsic contextual factors included living strategies (seeking social interaction with others, maintaining a sense of control over life and the illness, "blocking HIV out of the mind", and adopting attitudes and beliefs to help manage living with HIV) and personal attributes (gender and aging). These factors may exacerbate or alleviate dimensions of HIV disability.

Conclusion

This framework is the first to consider the contextual factors that influence experiences of disability from the perspective of adults living with HIV. Extrinsic factors (level of social support and stigma) and intrinsic factors (living strategies and personal attributes) may exacerbate or alleviate episodes of HIV-related disability. These factors offer a broader understanding of the disability experience and may suggest ways to prevent or reduce disability for adults living with HIV.