Measuring and Modeling Disability, Comorbidities and Rehabilitation among People Living with HIV in Canada: The HIV, Health and Rehabilitation Survey
People living with HIV may face a range of health challenges due to HIV, side effects of treatments, or other health conditions. Different services can help people living with HIV deal with these challenges. But we do not know what types of services people living with HIV are using, how often they are using them, and whether they find these services helpful. Knowing the range of health conditions that people living with HIV are living with, the types of health challenges they experience and how they deal with them can help people living 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 was the goal of the HIV Health and Rehabilitation Survey (HHRS)?
The HHRS is a web-based survey with adults living with HIV in Canada done in order to establish a comprehensive profile of the range of health-related challenges (disability) experienced by people living with HIV and the rehabilitation services and living strategies they use to deal with their health-related challenges.
What do we mean by Disability?
We broadly define disability as any physical, cognitive, mental or emotional health symptoms and impairments, difficulties carrying out day-to-day activities, challenges to social inclusion and uncertainty (or worrying about the future) experienced by adults living with HIV.
What do we mean by Rehabilitation?
Rehabilitation services broadly encompass traditional forms of rehabilitation (occupational therapy, physical therapy, speech-language pathology, physiatry), complementary and alternative therapies, as well as services from AIDS Service Organizations and Community-Based Service Organizations.
The HHRS aimed to answer the following research questions …
- What is the profile of disability, comorbidities, rehabilitation services use, and living strategies used by adults living with HIV to deal with their health-related challenges?
- How is disability experienced by adults living with HIV, meaning how do different dimensions of disability relate to each other? and
- How do personal attributes (age, gender, ARV use) and environmental factors (social support, stigma) influence disability experienced by adults living with HIV?
What were the methods of the HHRS Study?
The HIV, Health and Rehabilitation Survey (HHRS) was a self-administered online survey comprised of questionnaires such as the HIV Disability Questionnaire, 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 people living with HIV in Canada. Click here to view the 30-second video that accompanied the original survey (link to Vimeo).
Who participated in the study?
941 individuals, 18 years of age or older living with HIV in Canada completed the HIV, Health and Rehabilitation Survey.
What were some of the key messages learned from the study?
- What concurrent conditions do people living with HIV have?
72% of our HHRS participants were living with 2 or more health conditions in addition to HIV.
- What rehabilitation services do people living with HIV use?
21% of our HHRS participants saw a Physical Therapist (PT), Occupational Therapist (OT), Speech-Language Pathologist (SLP) or Physiatrist in the past year. Of those who accessed rehabilitation services, 71% felt that the interventions helped reduce, minimize or prevent their health challenges in the past year. The majority (46-55%) felt they needed to see their rehabilitation professional more often.
- What health-related challenges do people living with HIV report?
Uncertainty and worrying about future health was a key issue reported by our participants in the HHRS. It also appears to, directly and indirectly, predict mental health symptoms and challenges to social inclusion for adults living with HIV.
- What living strategies do people living with HIV employ?
In the absence of formalized rehabilitation services, HHRS participants were engaging in a variety of daily living strategies to minimize, prevent or reduce health challenges associated with living with HIV. Living strategies included a combination of social and positive attitudinal strategies dealing with HIV (e.g. spending time with friends and family; accepting that health can fluctuate living with HIV; positive outlook). 40% of our HHRS participants who used living strategies felt they helped reduce, minimize or prevent the challenges of living with HIV.
How did the HHRS research team analyze the survey responses?
We used a combination of descriptive statistics and a statistical technique called structural equation modelling to characterize the disability experience and determine the influence of personal and environmental factors on dimensions of disability. This research yielded the first Canadian profile of disability and rehabilitation from the perspective of people living with HIV.
Who conducted this study?
This research study was done by a team of researchers, clinicians, people living with HIV, and community-based organizations in regions across Canada. This research includes a community-academic-clinical partnership among Realize (formerly CWGHR), people living with HIV, university-based researchers (University of Toronto, McMaster University, University of Victoria and Dalhousie University), clinicians (University College Hospitals London NHS Foundation Trust), and community agencies (Ontario HIV Treatment Network, AIDS Coalition of Nova Scotia, Dr. Peter AIDS Foundation, Nine Circles Community Health Centre, Toronto People with AIDS Foundation, Casey House and Positive Living Society of British Columbia.
This study was funded by the Canadian Institutes of Health Research (CIHR) Institute of Infection and Immunity: HIV/AIDS.
What did People living with HIV think about the HHRS?
- “Thank you for the card, but more importantly, having me participate. Thank you for producing this survey; the more knowledge we have, the more we can change.” (Comment from a participant in the second HHRS Pilot Phase)
- “I liked the layout. Some surveys jump all over the place. This one was straightforward and lead in a specific direction. The questions reminded me of what the survey was – straightforward and smooth. Questions were well designed.” (Comment from a participant in the first HHRS Pilot Phase)
How Can I Get a Summary of the Study Results?
Please click here to access both the English and French versions of the HHRS fact sheet. These provide a summary of the key findings of the HHRS to the broader community including people living with HIV, knowledge user and collaborator organizations, clinics and community-based organizations.
Are the results published?
We published on our process and lessons learned conducting web-based surveys using community-engaged approaches as well as the results of the study on profile of disability and living strategies use in the following peer-reviewed publications:
- O’Brien KK, Solomon P, Worthington C, Ibáñez-Carrasco F, Baxter L, Nixon SA, Baltzer-Turje R, The HIV, Health And Rehabilitation Survey Catalyst Team. Considerations for Conducting Web-Based Survey Research With People Living With Human Immunodeficiency Virus Using a Community-Based Participatory Approach. J Med Internet Res 2014;16(3):e81. doi: 10.2196/jmir.3064.
- O’Brien KK, Hanna S, Solomon P, Worthington C, Ibáñez-Carrasco F, Chan Carusone S, Nixon S, Merritt B, Gahagan J, Baxter L, Gayle P, Robinson G, Baltzer Turje R, Tattle S, Yates T. Characterizing the Disability Experience among Adults Living with HIV: A Structural Equation Model Using the HIV Disability Questionnaire (HDQ). BMC Infectious Diseases. 2019; 19:594. https://doi.org/10.1186/s12879-019-4203-0
- O’Brien KK, Dagenais M, Solomon P, Worthington C, Chan Carusone S, Ibáñez-Carrasco F, Hanna S, Gahagan J, Baxter L, Robinson G, Gayle P, James D, Yates T. and the HIV, Health and Rehabilitation Survey (HHRS) Team. Use of Living Strategies among HIV+ persons in Canada: Comparison by age group using data from the HIV, Health and Rehabilitation Survey. Journal of the International Association of Providers of AIDS Care (JIAPAC). 2018; Volume 17; 1-16. http://journals.sagepub.com/doi/full/10.1177/2325958218774041
O’Brien KK, Ibanez-Carrasco F, Carriere C. HIV Health and Rehabilitation Survey (HHRS). Fact sheet four-page summary that provides an overview of the study findings related to disability, comorbidities, rehabilitation services use and living strategies among people living with HIV in Canada. Available online: September 2016.
- Kelly O’Brien, Department of Physical Therapy, University of Toronto
- Patty Solomon, School of Rehabilitation Sciences, McMaster University
- Catherine Worthington, School of Public Health and Social Policy, University of Victoria
- Steven Hanna, Department of Clinical Epidemiology and Biostatistics, McMaster, University.
- Francisco Ibáñez-Carrasco, Universities Without Walls, Ontario HIV Treatment Network
- Jacqueline Gahagan, Faculty of Health Professions, Dalhousie University
- Brenda Merritt, School of Occupational Therapy, Dalhousie University
- Stephanie Nixon, Department of Physical Therapy, University of Toronto
Knowledge Users and Collaborators
- Elisse Zack, Realize (formerly CWGHR)
- Larry Baxter, Community Member, Halifax, Nova Scotia, Canada
- Greg Robinson, Community Member, Toronto, Ontario, Canada
- Will Chegwidden, National Hospital for Neurology and Neurosurgery University College Hospitals London NHS Foundation Trust (London, UK)
- Patriic Gayle, Gay Men’s Health Collective (GMHC), Three Flying Piglets (London, UK)
- Rosalind Baltzer Turje and Patrick McDougall, Dr. Peter AIDS Foundation, Vancouver, British Columbia, Canada
- Tara Carnochan and Katie Kitchen, Nine Circles Community Health Centre, Winnipeg, Manitoba, Canada
- Neil Self, Adam Reibin, Wayne Campbell, Positive Living Society of British Columbia, Vancouver, British Columbia, Canada
- Soo Chan Carusone, Casey House, Toronto, Ontario, Canada
- Murray Jose-Boerbridge, Toronto People with AIDS Foundation, Toronto, Ontario, Canada
- Laura Toole, Liz Harrop-Archibald, AIDS Coalition of Nova Scotia, Canada
- Tammy Yates, Realize, Toronto, Ontario, Canada
- Stephen Tattle, Realize, Toronto, Ontario, Canada
- Ayesha Nayar & Nkem Iku, Research Coordinators, University of Toronto
This study was funded by a grant from the Canadian Institutes of Health Research (CIHR), (FRN #120263). We thank the Knowledge Users, Collaborator Organizations and Recruitment Network. O’Brien and Nixon are supported by a CIHR New Investigator Award. We thank the HHRS participants. We thank Chris Carriere (Ontario HIV Treatment Network) for contributing to the development of the fact sheets.
Special thanks to the following for their collaboration and support of the HHRS Study
Realize (formerly CWGHR), Casey House (Toronto), Toronto People With AIDS Foundation (PWA), AIDS Committee of Durham Region, AIDS Niagara, HIV Care Program Windsor Regional Hospital, AIDS Committee of Toronto (ACT), Prisoners with HIV/AIDS Support Action Network (PASAN), Dr. Kovacs’ Office-Maple Leaf Medical Centre (Toronto), The AIDS Network (Hamilton), AIDS Committee of Ottawa, Teresa Group (Toronto), HIV/AIDS Regional Services (Kingston), AIDS Committee of Windsor, Dr. Peter AIDS Foundation (Vancouver), Positive Living Society of British Columbia, HIV Edmonton, Positive Women’s Network (Vancouver), Pacific AIDS Network, Alberta Community Council on HIV (Edmonton), Nine Circles Community Health Centre (Winnipeg), AIDS Community Care Montreal (ACCM), Northern AIDS Connection Society, AIDS Committee of Newfoundland and Labrador, AIDS Saint John, and AIDS New Brunswick (Fredericton).