HIV OVER THE LONG TERM: CONSIDERATIONS AND RECOMMENDATIONS Our recommendations are grounded in the voices of those living with HIV over the long term and the service providers who support them. Understanding HIV over the long term requires that we consider the durational aspects of living with the disease, the historical context that shapes individuals’ experiences with HIV, and the ways in which illness experience changes both over time and across the lifespan. By focusing on the HIV over time, our research participants described HIV with all of the features common to chronic illness experience. In particular, ongoing holistic healthwork and the accumulation of impacts emerged as fundamental aspects of living with HIV over the long term. By understanding HIV as a chronic illness, we may better acknowledge and respond to the burden of care associated with HIV and the way in which its effects accumulate over time. The recommendations emerging from this study are focused on this understanding of HIV. We offer 7 recommendation grouped under 3 categories: programs, services, and systems; research; and policy. PROGRAMS, SERVICES, AND SYSTEMS Our research suggests that understanding the burden of care associated with HIV is fundamental to the development and provision of health and social services that support people living with HIV and their communities. Ensuring that people living with HIV have access to HIV medications is one critical component of adequate treatment. Supporting long-term adherence to these medications in the context of the social determinants of health and individual’s informed choice is perhaps a more significant aspect of HIV treatment. Programming that asks the question, “what do you need to manage you illness?” and asks this question consistently taps into the expertise of people living with HIV and considers the changing experience of illness over the life course. With this in mind, we have four programming-related recommendations: Relationship building for long-term engagement: The potential for long-term relationship building is important in terms of providing or accessing care related to chronic illness. Our focus group participants described the relationships they had developed with service providers and organizations as fundamental to their healthwork. We recommend relationship building be considered an important component of care that can sustain long-term engagement with organizations. Over time, relationships may need to shift or grow in order to accommodate changing roles or levels of engagement. Person-centred care and support: All of our research participants described the importance of tailoring services to individuals. Their feedback highlighted the range and variation of support
Living with HIV Over the Long Term: Community Report
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