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    HIV, Health and Rehabilitation Survey

    HHR Survey

    Measuring and Modeling Disability, Comorbidities and Rehabilitation among People Living with HIV in Canada: The HIV, Health and Rehabilitation Survey

    Background:

    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 ...

    1. 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?
    2. How is disability experienced by adults living with HIV, meaning how do different dimensions of disability relate to each other? and
    3. 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) is 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.     

    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.

    concurrent_conditions

    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.

    rehabilitation_services

    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.

    health-related_challenges

    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.

    living_strategies

    How did the HHRS research team analyze the survey responses?

    We used a combination of descriptive statistics and a statistical technique called structural equation modeling to characterize the disability experience and determine the influence of personal and environmental factors on dimensions of disability. This research has 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 is funded by the Canadian Institutes of Health Research (CIHR) Institute of Infection and Immunity: HIV/AIDS.

    Want to learn more about the HHRS?
    Click Here to watch a video trailer about the HHRS

    What do 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?

    You can access the launch of the HIV, Health and Rehabilitation Survey Fact Sheet!

    What is the aim of the HHRS Fact Sheet?

    The aim of this summary is to highlight 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. 

    Please click here to access both the English and French versions of the HHRS fact sheet. (can we link the two PDF documents for the English and French versions of the fact sheet I attached to this email)

    The fact sheet summary is also available on the realize (formerly CWGHR) website at www.realizecanada.org.

    Are the results being shared in other ways?

    Yes. We are sharing the findings with the community in collaboration with the knowledge user and collaborator organizations who were involved in the study.  We are also presenting the findings at conference such as the Canadian Association for HIV Research (CAHR) conference and results will be written up for publication in peer-reviewed journals.

    For more information about the HIV, Health and Rehabilitation Survey or the Fact Sheet Summary or about this study, please contact Melanie Bisnauth (Research Coordinator) at melanie.bisnauth@utoronto.ca or Kelly O'Brien (Principal Investigator) at kelly.obrien@utoronto.ca

    Researchers

    • Kelly O'Brien (Nominated Principal Applicant)–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 – realize (formerly CWGHR)
    • Greg Robinson - Canadian Working Group on HIV and Rehabilitation (formerly CWGHR)
    • Will Chegwidden – Occupational Therapist, National Hospital for Neurology and Neurosurgery University College Hospitals London NHS Foundation Trust (London, UK)
    • Patriic Gayle –Canada-UK HIV and Rehabilitation Research Collaborative, 3FP Prevention (London, UK)
    • Rosalind Baltzer-Turje; Patrick McDougall – Dr. Peter AIDS Foundation (Vancouver)
    • Tara Carnochan; Katie Kitchen - Nine Circles Community Health Centre (Winnipeg)
    • Positive Living Society of British Columbia (Neil Self)
    • Casey House (Soo Chan Carusone)
    • Toronto People with AIDS Foundation (Murray Jose)
    • AIDS Coalition of Nova Scotia (Laura Toole)
    • Tammy Yates – realize (formerly CWGHR)
    • Stephen Tattle - realize (formerly CWGHR)
    • Dawn James; Katie Kitchen - Nine Circles Community Health Centre (Winnipeg)
    • Tammy Reimer; Katie Kitchen - Nine Circles Community Health Centre (Winnipeg)
    • Ayesha Nayar & Nkem Iku (Research Coordinators, University of Toronto)
    • Positive Living Society of British Columbia (Wayne Campbell)
    • Positive Living Society of British Columbia (Adam Reibin)
    • Toronto People with AIDS Foundation (Murray Jose- Boerbridge) 
    • AIDS Coalition of Nova Scotia (Liz Harrop-Archibald)

    Acknowledgements: 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 also thank Chris Carriere (Ontario HIV Treatment Network) for contributing to the development of this fact sheet.

    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).