期刊
PROGRESS IN COMMUNITY HEALTH PARTNERSHIPS-RESEARCH EDUCATION AND ACTION
卷 8, 期 4, 页码 549-559出版社
JOHNS HOPKINS UNIV PRESS
DOI: 10.1353/cpr.2014.0071
关键词
HIV; questionnaires; self-report; disability evaluation; community-based participatory research
资金
- Michael G. DeGroote Fellowship (McMaster University)
- Canadian Institutes of Health Research (CIHR), HIV/AIDS Research Program and Michael G. DeGroote Postdoctoral Fellowship (McMaster University)
- Canadian Institutes of Health Research/Ontario Ministry of Health and Long-Term Care Applied Chair in Health Services and Policy Research
- Ontario Ministry of Health and Long-Term Care
Background: People with HIV face a variety of health-related challenges from HIV, concurrent health conditions, and side effects of treatment. These health-related challenges may be termed disability. Community involvement in conceptualizing and understanding disability is essential to developing appropriate measurement tools. Objective: To describe a community academic partnership in the development of a new self-administered health status instrument, the HIV Disability Questionnaire (HDQ), using a community-engaged approach. Methods: With a Community Advisory Committee, we used categories from the Episodic Disability Framework, a conceptual framework developed in an earlier stage of research, as a foundation for item generation. Results: The purpose of the 70-item HDQ is to characterize the presence, severity, and episodic nature of disability experienced by adults with HIV. The Community Advisory Committee suggested items beyond those in the Episodic Disability Framework, refined item phrasing, order, response options, and questionnaire instructions to enhance feasibility and relevance of the HDQ to adults with HIV, advised on how to structure the questionnaire to capture the episodic nature of disability, and suggested next steps for testing and implementation. Conclusions: The HDQ is the first HIV-specific questionnaire to describe disability experienced by adults with HIV. Engaging community research partners in the development of the HDQ enhanced the questionnaire's relevance, feasibility, and face and content validities. This approach may be considered by others interested in health status instrument development.
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