Researcher Background
Dr. Kristina Kokorelias is a researcher at the University of Toronto. Her work focuses on caregivers, aging, and how people use health and social care services. She studies how families and chosen families support people with serious illness. The research team includes experts in HIV, caregiving, and end-of-life care, along with community partners. This helps make sure the study reflects real-life experiences and needs.
Purpose of this Research Project
This study looks at the experiences of people who care for an older adult living with HIV at the end of life. These caregivers are often chosen family, such as friends, partners, or non-biological family members. Many people living with HIV depend on chosen family for support, but these caregivers are often not fully recognized or supported by the healthcare system.
The goal of this study is to learn what it is like to provide this type of care. We want to understand what caregivers do day-to-day, what challenges they face, and what kind of support they need. We also want to know how caregivers work with doctors, nurses, and other services, and how these systems could work better for them.
Participants will take part in a confidential interview. They will be asked about their caregiving experiences, the healthcare system, and what has helped or made things harder for them. We will also ask what kinds of supports would be most helpful.
The results of this study will help improve services for caregivers and people living with HIV. By sharing caregivers’ experiences, we hope to help healthcare providers and organizations create more caring, fair, and respectful end-of-life care. The findings will also help support policies that recognize chosen family and make sure they are included in care decisions.
How this Research Will Help 2SLGBTQ+ People and Communities
Many people living with HIV and their caregivers are 2SLGBTQ. They often rely on chosen family instead of traditional family. This study will help show what 2SLGBTQ caregivers go through and what support they need. The results will help improve services so they are more respectful, inclusive, and welcoming.
Eligibility & Participation
Adults (18+) in Ontario who provide unpaid care to an older adult living with HIV. This includes family members, friends, partners, or other support people.
Compensation
Participants will receive a $25 gift card for taking part. They can choose to receive it by email or by mail.
Participant Support & Mitigation Measures
Participants may pause, skip questions, or stop the interview at any time. If they become upset, the researcher will pause the interview and provide information about support services.
How to Participate / Recruitment
The study is being promoted using a research recruitment poster that invites caregivers to contact the research team by email to learn more.