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    Website of the HIV Special Interest Group

    -as part of the College of Occupational Therapists Specialist Section - HIV/AIDs, Oncology & Palliative Care

The Episodic Model of Disability is a model that is under development at the University of Toronto.

It is being well received in then UK as the first model specifically designed on an HIV population that helps practitioners and students conceptualise the journey for an individual infected with HIV.

The model is well evolved although is having some final tweaking before it is finally published. A reference for the preliminary version is below.

O’Brien K, Bayoumi A, Davis A, Strike C, Young N. Exploring “Disability” from the Perspective of Adults Living with HIV/AIDS: Development of a Conceptual Framework. 15^th Annual Canadian Conference on HIV/AIDS Research (CAHR).Canadian Journal of Infectious Diseases & Medical Microbiology. Volume 17. Supplement A. May / June 2006. Abstract #422.  

Objective:  To develop a conceptual framework that describes what “disability” means from the perspective of adults living with HIV. 

Methods: We conducted focus groups and interviews with people who experienced an “episode” of illness attributed to 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 health. We used grounded theory techniques to develop a conceptual framework describing the consequences of living with HIV.  

Results:  We recruited 38 participants (21 men, 16 women, 1 transgendered person) for 4 focus groups and 15 face-to-face interviews.  Participants had a median time since HIV diagnosis of 9 years (interquartile range: 5-9); 25 (66%) were taking antiretrovirals and 19 (50%) had a nadir CD4 count <200 cells/mm3.  Participants conceptualized “disability” as episodic in nature, characterized by unpredictable periods of wellness and illness due to HIV and its associated treatments. The conceptual framework included four dimensions: 1) symptoms/impairments, 2) difficulty carrying out day-to-day activities, 3) HIV “weighing on the mind”/worrying about the future (e.g., stress, anxiety and depression, fear, low self-esteem, loneliness and concerns about how “the numbers” including CD4 count and viral load influence their health), and 4) challenges of social inclusion (e.g., engaging in parental roles, work and school, personal relationships, and travel).  The framework also included modifiers that can influence “disability” such as: antiretroviral medications, availability of support, effects of aging, coping strategies, co-morbidities (including opportunistic infections) and stigma.   

Conclusions:  “Disability” experienced by adults living with HIV is episodic and multi-dimensional, including symptoms/impairments, difficulty carrying out day-to-day activities, HIV “weighing on the mind”/worrying about the future and challenges of social inclusion.  These dimensions should be considered by providers in clinical practice and in the future measurement of “disability” experienced by people living with HIV. 

Send mail to will.chegwidden@bartsandthelondon.nhs.uk with questions or comments about this web site.                           
Last modified: 16 May 2007