HIV, Health and Rehabilitation Survey

Measuring and Modeling Disability and Rehabilitation Services Use among People Living with HIV

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People living with HIV may face a range of health challenges due to HIV, side effects of treatments, or other health conditions. These challenges can include physical symptoms such as pain or fatigue, mental health challenges such as difficulty remembering, along with challenges participating in community life such as work and recreation.

While there are health and community services that can assist people living with HIV with these challenges, we do not know what types of services people living with HIV are using, how often they are using them, and whether they think these services are helping to manage their challenges.

Understanding the range of health conditions that people with HIV are living with, the types of health challenges they experience, and how they deal with them can help people with HIV, AIDS service organizations, health care providers, and community leaders get a better understanding of how to meet the needs of people living with HIV.

What is the Purpose of the HHRS Study?
To establish a comprehensive profile of disability experienced by adults living with HIV in Canada and determine how intrinsic and extrinsic contextual factors such as comorbidities, related rehabilitation services use and living strategies influence the disability experience.

Specific research objectives are:

  1. To determine the profile of (a) disability; (b) comorbidities; (c) rehabilitation service utilization; and (d) living strategies used by adults living with HIV to deal with their health-related challenges;
  2. To characterize the disability experience by determining the relationships between dimensions of disability for adults living with HIV; and
  3. To determine how intrinsic (personal attributes) and extrinsic (social support; stigma) contextual factors influence disability experienced by adults living with HIV.

What is the HHRS?
The HIV, Health and Rehabilitation Survey (HHRS) is a self-administered online survey conducted with adults living with HIV across Canada. The HHRS survey instrument is comprised of questionnaires such as the HIV Disability Questionnaire (HDQ), social support, coping, stigma and living strategy scales, demographic questionnaire (personal attributes including comorbidities, age, gender), and a questionnaire exploring rehabilitation and community-based organization services use from the perspective of PHAs.

Who could participate?
Any adult (18 years or older) living with HIV in Canada able to read and understand English.

How were participants recruited?
Recruitment included a partnership with 28 community-based organizations and clinics across Canada. Organizations sent out a series of emails and e-blasts to their members, supplemented by posters, flyers, penguin video and word of mouth. Participants received a $25 electronic gift card for completing the survey.

Learn more on the community-engaged process of the HIV Health and Rehabilitation Survey.

Main Findings
Of the 1850 individuals who accessed the survey, 1477(80%) initiated and 1171(79%) completed the survey, resulting in 941 completed valid responses. Of the 941 participants the majority were men (79%), median age of 48 years, taking antiretroviral therapy (91%) and living with 2 or more concurrent health conditions (72%).

Uncertainty and worrying about future health was a key dimension of disability experienced by HHRS participants.

Twenty-one percent (21%) of HHRS participants saw a physical therapist, occupational therapist, speech-language pathologist, or physiatrist in the past year. Of those who accessed rehabilitation services, 71% felts that the interventions helped reduce, minimize or prevent their health challenges in the past year.

In the absence of formalized rehabilitation services, adults with HIV are engaging in a variety of daily living strategies to minimize, prevent or reduce health challenges living with HIV.

Analyses of the HHRS data are ongoing.

Implications
Rehabilitation has a role in addressing disability experienced by adults with HIV, specifically mitigating symptoms and impairments, addressing uncertainty, and barriers to social inclusion (e.g. labour force participation).

In the absence of formalized rehabilitation services living strategies offer ways in which to address disability using a self-management framework.

Fact Sheet Summary

Click here to access a summary of the key findings of the HHRS Fact Sheet in English and French.

For more information about the HIV, Health and Rehabilitation Survey or the Fact Sheet Summary, please contact CIHRRC Coordinator, Rachel Aubry at cihrrc@utoronto.ca 

For More Information Contact

HIV Health and Rehabilitation Survey Study Team

Researchers
Kelly O’Brien (University of Toronto), Patty Solomon (McMaster University), Francisco Ibáñez-Carrasco (Ontario HIV Treatment Network), Catherine Worthington (University of Victoria), Jacqueline Gahagan (Dalhousie University), Stephanie Nixon (University of Toronto), Steven Hanna (McMaster University), Brenda Merritt (Dalhousie University).

Knowledge Users
Elisse Zack / Stephen Tattle/ Tammy Yates (Canadian Working Group on HIV and Rehabilitation (CWGHR)), Will Chegwidden (National Hospital for Neurology and Neurosurgery, University College Hospitals), Patriic Gayle (Three Flying Piglets), Larry Baxter (Community Member), Greg Robinson (Community Member), Tara Carnochan/Dawn James/Tammy Reimer (Nine Circles Community Health Centre), Rosalind Baltzer Turje/Patrick McDougall (Dr. Peter AIDS Foundation), Melanie Bisnauth and Nkem Iku (Research Coordinators).

Collaborators
Toronto PWA Foundation (Murray Jose-Boerbridge), Casey House (Soo Chan Carusone), Positive Living Society of British Columbia (Wayne Campbell/Adam Reibin), AIDS Coalition of Nova Scotia (Liz Harrop-Archibald/Laura Toole).

Acknowledgements
This study was funded by a grant from the Canadian Institutes of Health Research (CIHR), HIV/AIDS Research Initiative (FRN #120263). O’Brien and Nixon were supported by CIHR New Investigator Awards. We thank the Knowledge User and Collaborator Organizations and Recruitment Network. We thank the HHRS participants.

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