Implications of HIV disease as a lifelong and episodic disability.
Int Conf AIDS 2004 Jul 11-16; 15:(abstract no. MoOrD1036)
Ibanez-Carrasco F, Zack E, O'Brien K, Reeve K Canadian Working Group on HIV and Rehabilitation, Toronto, ON, Canada
Although anti-HIV medications have positively changed the clinical outlook for many individuals in developed countries, they show a series of long-term impacts. This study assesses the emerging collective experience of living with HIV and implications for policy, programs, practice and further research. This study was conducted by the Canadian Working Group on HIV and Rehabilitation (CWGHR) guided by a national multi-sector advisory committee of community members, academics and health professionals. It sought to explore current conditions in the lives of people living with HIV. Methods included a literature review and focus group discussions with people living with HIV in 6 locations across Canada. Transcripts were analyzed to identify themes to reflect the emerging meanings and impacts of HIV. Historical comparisons with the previous generation of persons living with HIV were drawn. The literature review evidences an endemic lack of understanding of how HIV+ people currently manage HIV and the impact of the cyclical nature of HIV-related events. The focus groups helped define how people living with HIV redefine the inherent anxiety and unpredictability of HIV disease as 'lifelong' and 'episodic'. Identified themes build on an existing understanding of the complex and comprehensive ways in which living with HIV becomes an 'episodic disability or condition' that impacts one's life in physical, functional, psychological, sexual, social, and vocational areas. Understanding HIV as 'lifelong and episodic' provides a framework for finessing the theory, practice and policy related to disability in the context of HIV. It allows health care practitioners and HIV+ 'consumers' to inform the development of relevant public policy, rehabilitation services and other HIV programs for care, treatment and support, including important implications for income support and employment issues. These findings also support alliances and initiatives with other episodic disability groups to inform policy and program development from a cross-disability perspective.
Keywords: AEGIS, HIV Infections, Acquired Immunodeficiency Syndrome, HIV Seropositivity, Disabled Persons, Mental Disorders, Health Services, Health Personnel, Delivery of Health Care, Focus Groups, Developed Countries, Family Characteristics, Research, Canada, organization & administration
