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    CIHRRC’s Completed Research

    Profiling Episodic Disability, Rehabilitation Services Use, and Living Strategies among People Living with HIV in Canada

    The HIV, Health and Rehabilitation Survey Study was derived from a Canadian Institutes of Health Research (CIHR) Community-Based Research Catalyst Grant entitled:  Profiling Episodic Disability, Rehabilitation Services Use, and Living Strategies among People Living with HIV in Canada.  The purpose of this foundational work was to develop a Canadian survey study to a) explore the prevalence of disability among PHAs and b) examine access to and use of related rehabilitation services from the perspective of PHAs.  

    Phase 1 Methods: 1) We developed a survey instrument called the HIV, Health and Rehabilitation Survey to describe the prevalence of disability among adults living with HIV, their use of rehabilitation services, and other wellness living strategies used to address or manage their disablement.  2) We developed a sampling strategy and data collection methods for the survey across Canada.   3) We pre-tested the survey instrument twice among team members.   The CUHRRC Catalyst Team met face-to-face in March 2011 in Toronto, Ontario Canada to review the survey instrument in preparation for the national pilot phase of the study.  Click here to view video highlights from this Toronto CUHRRC Meeting.

    Phase 2 Methods:  4) We piloted the HIV, Health and Rehabilitation Survey, with a sample of adults living with HIV in Canada using Lime Survey software.  Collaborator organizations emailed potential participants to invite them to complete the online questionnaire. The electronically administered questionnaire was comprised of six components: disability, rehabilitation services use, comorbidities, living strategies use, stigma and social support, demographic and disease characteristics.  We obtained feedback on the survey process and instrument in a structured phone interview with respondents. Participant responses were documented verbatim and analyzed using directed content analysis.

    Results: At least 56 adults living with HIV were invited to participate in the pilot. Of the 30 who accessed the survey link, 24 (80%) initiated and 16 (53%) completed the survey. Seventeen respondents participated in post-survey interviews.  Overall, strengths of implementing an online self-administered survey included ease of software use, ability to complete the questionnaire on one’s own time at one’s own pace, opportunity to obtain geographic variation, and the ability for anonymity.  Considerations for future survey implementation include the burden on collaborator organizations to administer the survey electronically, varying computer skills across participants, respondent fatigue, potential neurocognitive challenges among respondents, challenges assessing capacity to consent, and the importance of providing contact information for participants to follow-up if needed.

    Conclusions: Overall the HIV Health and Rehabilitation Survey pilot provided essential information to inform revisions to the survey instrument and implementation, and provide broader considerations for researchers conducting online survey research with PHAs.  

    Knowledge Translation:

    • O'Brien KK, Solomon P, Worthington C, Ibáñez-Carrasco F, Baxter L, Nixon SA, Baltzer-Turje R, The HIV, Health And Rehabilitation Survey Catalyst Team. Considerations for Conducting Web-Based Survey Research With People Living With Human Immunodeficiency Virus Using a Community-Based Participatory Approach. J Med Internet Res 2014;16(3):e81. URL: http://www.jmir.org/2014/3/e81/   doi: 10.2196/jmir.3064.

    Funding:  This study was funded by the Canadian Institutes of Health Research (CIHR) Institute Community-Based Research (CBR) HIV/AIDS Research Initiative.

    For more information, please contact Kelly O’Brien at kelly.obrien@utoronto.ca.

    HIV and Rehabilitation: Bridging Policy and Practice: A Policy Analysis of Rehabilitation Services Access between Canada and the UK

    Background: With the advent of combination antiretroviral therapy, people with HIV/AIDS are living longer. However, health policies, including those related to eligibility for rehabilitation programs and services differ depending on federal, provincial, or regional differences and may impact the health outcomes of PHAs.

    Purpose: The purpose of this study was to explore policies on HIV and rehabilitation services in Canada.

    Methods: We conducted a scoping review of literature on HIV and rehabilitation in Canada and the UK.  Our search included CINAHL, PubMed, MEDLINE, ERIC, PsycInfo, and Cochrane Library for published policy documents related to rehabilitation service delivery, as well as grey literature on AIDS service organizations, non-governmental organizations, and discipline-specific professional organization websites.  Documents were reviewed by at least one reviewer to determine study inclusion and confirmed by five team members.

    Results:  Our research suggests the need for HIV-specific considerations to be maintained in the provision of rehabilitation services due to the myriad of unique issues faced by men and women living longer with HIV in Canada. Additionally, a need exists for policy consideration toward healthy aging across the lifespan.

    Knowledge Translation:  Results from this scoping study were presented at the Canadian Association for HIV Research (CAHR) Conference in April 2012. 

    Gahagan J, Ross E, Hill-Mann A, Walker S, Lewellen D. and the HIV and Rehabilitation Policy Research Team (2012). HIV, Chronic Disease, and Rehabilitation in Canada: A Scoping Review of HIV Policy Approaches (P201). Can Journal of Infectious Diseases and Microbiology. 23 (Suppl A) Spring 2012. P Canadian Association for HIV Research Conference, Montreal, Quebec. April 19-22, 2012. Pp99A.

    The complete final report can be accessed online:
    Gahagan J, Ross E, Hill-Mann A, & Lewellen D. (2012) A scan of policies related to access to rehabilitation in Canada and the United Kingdom.  Halifax, Nova Scotia: Department of Health Promotion, Dalhousie University. http://www.catie.ca/sites/default/files/HIV-Rehab-Policy-Scoping-Review-REACH-FINAL.pdf

    Funding:  This study was funded by the Research Evidence into Action for Community Health (REACH) Policy Seed Grant.

    For more information contact Jacqueline Gahagan at Jacqueline.Gahagan@dal.ca