Situating the Preferences And Needs for Aging Care among HIV-positive Elderly people in Ontario within the UN Principles for Older Persons

The PANACHE Ontario Project: Preferences And Needs for Aging Care among HIV-positive Elderly people in Ontario (“PANACHE ON”) is a qualitative community-based participatory research(CBPR) study that conducted community consultations with people aging with HIV at nine community-based organizations in Ontario, Canada to ascertain their preferences and needs for aging care.

We are using this information in two ways:

1.To make recommendations to policy makers, healthcare leaders, and organizational decision-makers that prompt change that improves the quality of life of older adults living with HIV, whether by increasing access to existing services or informing the development of new programs.

2.To develop a survey that will be used to gather information regarding the comprehensive healthcare and social support needs and preferences of a
larger group of older people living with HIV across Canada.

“You start to get a little fearful ’cause you’re living alone like what the hell’s going to happen, you know there’s no money to get anybody to come in and do anything…”
_{focus group participant}

Three Universal Experiences Shared by Older Adults Living with HIV
Older adults living with HIV, especially those diagnosed for many years, share in common a triad of experiences – trauma, stigma, and fear and uncertainty – that intersect to undermine the ‘normal’ aging process. In the context of limited external resources, another shared reality for many people living with HIV, it can be challenging to carry these burdens over the life course and into older adulthood

Results
Numerous questions about future health and care, and several factors that detract from present-day well-being, including resource insufficiency, gaps in support, and intersecting forms of stigma, emerged through this research.

Resource Insufficiency
Most participants relied on income support programs and/or pension(s). Many
struggled to afford adequate food, shelter and health-related resources, especially
those living long-term with HIV. Creative strategies for making ends meet were shared.

Gaps in Support
HIV/AIDS-related loss, disclosure-related estrangement, and/or internalized cultural
norms about intimacy were frequently mentioned as experiences having lasting negative impacts on participants’ social networks. While many said they rebuilt or maintained a reliable support network with their local community-based HIV organization playing a central role, some participants described being alone or lonely. About two thirds lived alone and many reported difficulties carrying out day-to-day tasks necessary for independent living.

HIV Stigma, Ageism and Ableism
Participants frequently mentioned experiences of HIV stigma, homophobia, and racism from family members, employers, service providers, and strangers across the life course.

Older people living with HIV described feeling increasingly vulnerable to violence and neglect with age, and invisible to political decision-makers. Many older people living with HIV voiced rejecting HIV stigmatization, but several narratives suggested internalized ageism and ableism continued to affect them.

Read the PANACHE Study Report, Findings and Recommendations

For more information, email: kmurzin@realizecanada.org

To all the PANACHE Ontario Research Team Members, Peer Researchers and Research Participants: we offer our sincerest thanks for your time and willingness to share your experiences and expertise.

PANACHE ONTARIO AT A GLANCE
Community-based participatory research project
9 focus groups ● 7 municipalities ● 73 older people living with HIV
Mean age of participants = 64 years
Median time living with HIV = 23 years (range 2-37 years)

This project was funded by the Ontario HIV Treatment Network.