Advancing Research and Practice in HIV And Rehabilitation
Advancing Research and Practice in HIV And Rehabilitation
The Framework of Research Priorities in HIV, Disability and Rehabilitation emerged from the perspectives of researchers, clinicians, people living with HIV, representatives from community-based organizations, funders and policy stakeholders in the field of HIV and rehabilitation through the first International Forum on HIV and Rehabilitation Research. Many of the priorities overlap suggesting a given research study may collectively address a number of priorities. This Framework reflects the current and emerging priorities in the field, directly building on the original six research priorities established by CWGHR in the 2008 national scoping study.
Priority 1 (episodic health and disability) replaced the original 'disability and episodic disability' priority in the earlier scoping study. Incorporating health into the priority reflected the transition of HIV into a chronic disease, and the need to adopt a more health-oriented approach and promote self-management strategies. Evidence has explored the experience of episodic disability and relationships between dimensions of disability, however the episodic nature of disability has not been examined longitudinally. Evidence on the barriers and facilitators to employment, and importance of employment as it relates to physical and mental health, has articulated the need for rehabilitation interventions, programs and policies to enhance the ability to recruit and retain people living with HIV in the employment sector. Priorities related to episodic disability may be similarly experienced by individuals living with other chronic and episodic illnesses such as mental health, arthritis, multiple sclerosis, and some forms of cancer. The CWGHR recently launched a business case for retaining and recruiting people with episodic disabilities in the workforce, which highlights the potential for cross-disability research on employment and labor force participation.
Priority 2 (aging with HIV across the life course) and Priority 3 (concurrent health conditions) were originally one collective priority. Given not all comorbidities are associated with older age, we felt it was important to make them distinct in the new Framework. Emerging evidence has provided further understanding of the experience of aging with HIV, particularly highlighting the influence of stigma, and the role of uncertainty among older adults aging with HIV. Uncertainty is a key component of disability, particularly for older adults living with HIV, who may worry about their source of health challenges; health providers' knowledge and skills; financial uncertainty; transition to retirement; appropriate long-term housing and who will care for them. Evidence supports the need to focus on interventions to promote successful aging for older adults with HIV in areas including cognitive, mental and social health, productivity, personal control and life satisfaction. This priority will build on earlier work of resilience, optimism and mastery among older adults to explore elements of strategies for successful aging with HIV. Ongoing updates on evidence-informed recommendations on rehabilitation for older adults with HIV will provide guidance for clinicians working in HIV care.
Neurocognitive health, which may or may not be related to aging, was a focus of research priority 3. Neurocognitive impairment in the context of HIV remains prevalent hence, appropriate screening and treatment are critical. Standards for enhancing overall psychosocial support provide guidelines to enhance mental, cognitive, emotional and behavioral well-being for adults with HIV. However, cognitive rehabilitation comprises a small component of these standards. A paucity of evidence exists on the effect of neurocognitive rehabilitation interventions for people living with HIV. Interventions should be tailored to yield 'real world' benefits targeted towards daily function and quality of life of people with HIV.
Mental health, specifically depression, was another focus of research priority 3. With persistent high rates of depression among people living with HIV, and its associated risk with non-adherence and decreased health-related quality of life, screening, and establishing effective interventions for depression remains critical to future HIV clinical practice and research.
Priorities 2 and 3 may be considered analogous to priorities on HIV and aging established by a working group in the National Institutes of Health Office of AIDS Research. These priorities similarly addressed multi-morbidity and the need to emphasize maintenance of function, and the complexity (or uncertainty) of assessing effects of HIV, treatment, and aging versus concurrent disease. The collective process of aging and the presence of concurrent health conditions are associated with functional status impairment and subsequently a determinant of frailty, a condition becoming increasingly important to consider among adults aging with HIV.
In this Framework, Priority 4 (rehabilitation service provision) and Priority 5 (effectiveness of rehabilitation interventions) are considered distinct; whereas they were grouped together in the earlier iteration of the priorities, highlighting the emerging evidence in these two fields.
While formalized HIV-specialist physical therapy and occupational therapy services exist in within the UK hospital environment, few people living with HIV access formalized rehabilitation services in Canada. With the rising prevalence of chronic diseases, the Canadian Academy of Health Sciences launched a vision where people with chronic conditions should have access to health care services and clinicians who are able to recognize their needs and help address their health challenges accordingly. Rehabilitation is a key component in the care continuum that may be considered situated within the HIV treatment cascade at the stage of linking to appropriate health services and support. However, lack of awareness of the role for rehabilitation and the paucity of evidence on its effectiveness remain barriers to those accessing rehabilitation services. CWGHR continues to coordinate a national Equitable Access to Rehabilitation agenda. With increasing rates of chronic disease among an aging HIV population, managing the complexity of episodic illnesses will make rehabilitation services even more important. Flexible person-centred care to recognize the complex and changing needs of people with HIV and episodic disability is critical for rehabilitation. Future research should explore the development and evaluation of complex integrative rehabilitation care delivery through specialty Day Health Programs, Community Health Centres, Hospitals, and AIDS Service Organizations.
Opportunities exist to explore innovative models in which to deliver rehabilitation care, interventions and support. Self-management has become increasingly important now that HIV is recognized as a chronic illness, associated with improvements in symptom management, anxiety, and medication adherence for PHAs. Self-management interventions in the context of HIV can include self-care, interpersonal skills, technical knowledge, cognitive skills, positive attitudes, planning for the future, and role management. Exercise is one self-management living strategy that may be adopted by adults with HIV to prevent disability and enhance health. Systematic reviews suggest exercise is safe and may lead to benefits in cardiopulmonary fitness, strength, weight and body composition, and psychological status for people with HIV. Despite these known benefits, few PHAs engage in exercise. Authors have described factors that influence adherence to exercise (and other interventions) in people living with HIV. Forum discussion highlighted the importance to consider adherence over the long-term in future intervention research as this is critical for adopting healthy living strategies.
Priority 6 highlights the importance of self-reported health outcomes in measuring the health-related consequences of HIV, aging and comorbidities and effectiveness of interventions. Physical and psychosocial dimensions of disability are associated with self-reported health status and important to consider in HIV care. The Assessment of Motor Performance Scale (AMPS), HIV Disability Questionnaire (HDQ), and measures of frailty were examples of outcomes used in practice and research discussed at the Forum. Consideration of disability outcomes are important to consider in HIV research. Outcomes that assess disability may be considered part of a universal pool of agreed upon measures in HIV, disability and rehabilitation research. The need to utilize well-validated indices in HIV human research has similarly been articulated in the context of HIV and aging.
Knowledge translation is an integral component of the Framework. It is critical researchers consider integrated knowledge transfer and exchange of evidence. Implementation science has become increasingly important to consider methods to promote the integration of research findings into HIV health care policy and practice. Stakeholders should consider mechanisms in which to ensure research evidence is translated to inform practice, program and policy in order to enhance health outcomes of people with HIV. Examples include strategies to increase knowledge about HIV care among rehabilitation professionals through the uptake of an electronic module on HIV rehabilitation or conducting a knowledge synthesis to develop evidence-informed recommendations on rehabilitation for clinicians working in HIV care. Community-based research can also help to enhance knowledge translation and exchange with community members and organizations to ensure research is relevant, and so that it can more effectively move into practice. Finally, the nature of our Forum approach, characterized by international, multi-sectoral and interdisciplinary stakeholder engagement ensured broad translation of research on HIV, disability and rehabilitation. Development of a Knowledge Translation and Exchange (KTE) Library comprised of speaker slides, research evidence panel films, and rapporteur notes further broadened the uptake of the evidence presented at the Forum. Overall, the knowledge translation, methodological considerations, and contextual factor components of the Framework are intended to guide the research process and its translation into programs and policy.
Our approach establishing new and emerging research priorities involved a multi-stakeholder consultation at the International Forum on HIV and Rehabilitation Research. We engaged a broad range of international stakeholders, with expertise in issues related to HIV and rehabilitation. Second, this Framework builds on the foundational work by CWGHR who established the original six priorities in 2008. This enabled stakeholders to reflect and consider changes related to HIV knowledge and treatment, shifts in the demographic profile of populations living with HIV, and changes related to health care systems. The Framework of Research Priorities in HIV, Disability and Rehabilitation reflects the changing tide of the HIV environment as it relates to the increasing complexities of multi-morbidity in HIV and the changing health system environment, influencing access to rehabilitation care. The Framework goes beyond the medical model, focused on virological or immunological outcomes of health, to emphasize the need to consider the consequences of disease (disability) and the role for rehabilitation in addressing disability. Third, the priorities in the Framework are evidence-based, building on the foundational research that was presented at the Forum. The priorities propose further critical inquiry and examination in order to promote timely and effective rehabilitation interventions and impact policy and practice. Fourth, these priorities emerged from five different mechanisms of consultation with various stakeholders involved in the Forum. Finally, the process in which the priorities were derived involved multiple perspectives and was refined with the research priority Forum working group.
Our approach was not without limitations. Although Forum participants were asked to broadly consider new and emerging issues related to HIV and rehabilitation, discussion and feedback was framed by the panel sessions which were based on the original six research priorities developed by CWGHR. Given we built on the original priorities, we did not conduct a second scoping study of HIV and rehabilitation research. However, the vast expertise in HIV and rehabilitation among participants at the Forum which focused on knowledge translation increased the likelihood that any newly published evidence since the original scoping study were likely discussed at the Forum. The research priorities were derived largely from the Canadian and UK perspective. Hence, the applicability of the Framework to other countries including the developing context is unknown. Future International Forums may consider expanding representation from other countries where the role for rehabilitation is emerging. Lastly, the Framework provides recommendations for broad content areas in which to pursue in HIV, disability and rehabilitation research. Next steps will be for researchers and clinicians to develop specific research questions and methodologies derived from these key priorities.
Discussion
The Framework of Research Priorities in HIV, Disability and Rehabilitation emerged from the perspectives of researchers, clinicians, people living with HIV, representatives from community-based organizations, funders and policy stakeholders in the field of HIV and rehabilitation through the first International Forum on HIV and Rehabilitation Research. Many of the priorities overlap suggesting a given research study may collectively address a number of priorities. This Framework reflects the current and emerging priorities in the field, directly building on the original six research priorities established by CWGHR in the 2008 national scoping study.
Priority 1 (episodic health and disability) replaced the original 'disability and episodic disability' priority in the earlier scoping study. Incorporating health into the priority reflected the transition of HIV into a chronic disease, and the need to adopt a more health-oriented approach and promote self-management strategies. Evidence has explored the experience of episodic disability and relationships between dimensions of disability, however the episodic nature of disability has not been examined longitudinally. Evidence on the barriers and facilitators to employment, and importance of employment as it relates to physical and mental health, has articulated the need for rehabilitation interventions, programs and policies to enhance the ability to recruit and retain people living with HIV in the employment sector. Priorities related to episodic disability may be similarly experienced by individuals living with other chronic and episodic illnesses such as mental health, arthritis, multiple sclerosis, and some forms of cancer. The CWGHR recently launched a business case for retaining and recruiting people with episodic disabilities in the workforce, which highlights the potential for cross-disability research on employment and labor force participation.
Priority 2 (aging with HIV across the life course) and Priority 3 (concurrent health conditions) were originally one collective priority. Given not all comorbidities are associated with older age, we felt it was important to make them distinct in the new Framework. Emerging evidence has provided further understanding of the experience of aging with HIV, particularly highlighting the influence of stigma, and the role of uncertainty among older adults aging with HIV. Uncertainty is a key component of disability, particularly for older adults living with HIV, who may worry about their source of health challenges; health providers' knowledge and skills; financial uncertainty; transition to retirement; appropriate long-term housing and who will care for them. Evidence supports the need to focus on interventions to promote successful aging for older adults with HIV in areas including cognitive, mental and social health, productivity, personal control and life satisfaction. This priority will build on earlier work of resilience, optimism and mastery among older adults to explore elements of strategies for successful aging with HIV. Ongoing updates on evidence-informed recommendations on rehabilitation for older adults with HIV will provide guidance for clinicians working in HIV care.
Neurocognitive health, which may or may not be related to aging, was a focus of research priority 3. Neurocognitive impairment in the context of HIV remains prevalent hence, appropriate screening and treatment are critical. Standards for enhancing overall psychosocial support provide guidelines to enhance mental, cognitive, emotional and behavioral well-being for adults with HIV. However, cognitive rehabilitation comprises a small component of these standards. A paucity of evidence exists on the effect of neurocognitive rehabilitation interventions for people living with HIV. Interventions should be tailored to yield 'real world' benefits targeted towards daily function and quality of life of people with HIV.
Mental health, specifically depression, was another focus of research priority 3. With persistent high rates of depression among people living with HIV, and its associated risk with non-adherence and decreased health-related quality of life, screening, and establishing effective interventions for depression remains critical to future HIV clinical practice and research.
Priorities 2 and 3 may be considered analogous to priorities on HIV and aging established by a working group in the National Institutes of Health Office of AIDS Research. These priorities similarly addressed multi-morbidity and the need to emphasize maintenance of function, and the complexity (or uncertainty) of assessing effects of HIV, treatment, and aging versus concurrent disease. The collective process of aging and the presence of concurrent health conditions are associated with functional status impairment and subsequently a determinant of frailty, a condition becoming increasingly important to consider among adults aging with HIV.
In this Framework, Priority 4 (rehabilitation service provision) and Priority 5 (effectiveness of rehabilitation interventions) are considered distinct; whereas they were grouped together in the earlier iteration of the priorities, highlighting the emerging evidence in these two fields.
While formalized HIV-specialist physical therapy and occupational therapy services exist in within the UK hospital environment, few people living with HIV access formalized rehabilitation services in Canada. With the rising prevalence of chronic diseases, the Canadian Academy of Health Sciences launched a vision where people with chronic conditions should have access to health care services and clinicians who are able to recognize their needs and help address their health challenges accordingly. Rehabilitation is a key component in the care continuum that may be considered situated within the HIV treatment cascade at the stage of linking to appropriate health services and support. However, lack of awareness of the role for rehabilitation and the paucity of evidence on its effectiveness remain barriers to those accessing rehabilitation services. CWGHR continues to coordinate a national Equitable Access to Rehabilitation agenda. With increasing rates of chronic disease among an aging HIV population, managing the complexity of episodic illnesses will make rehabilitation services even more important. Flexible person-centred care to recognize the complex and changing needs of people with HIV and episodic disability is critical for rehabilitation. Future research should explore the development and evaluation of complex integrative rehabilitation care delivery through specialty Day Health Programs, Community Health Centres, Hospitals, and AIDS Service Organizations.
Opportunities exist to explore innovative models in which to deliver rehabilitation care, interventions and support. Self-management has become increasingly important now that HIV is recognized as a chronic illness, associated with improvements in symptom management, anxiety, and medication adherence for PHAs. Self-management interventions in the context of HIV can include self-care, interpersonal skills, technical knowledge, cognitive skills, positive attitudes, planning for the future, and role management. Exercise is one self-management living strategy that may be adopted by adults with HIV to prevent disability and enhance health. Systematic reviews suggest exercise is safe and may lead to benefits in cardiopulmonary fitness, strength, weight and body composition, and psychological status for people with HIV. Despite these known benefits, few PHAs engage in exercise. Authors have described factors that influence adherence to exercise (and other interventions) in people living with HIV. Forum discussion highlighted the importance to consider adherence over the long-term in future intervention research as this is critical for adopting healthy living strategies.
Priority 6 highlights the importance of self-reported health outcomes in measuring the health-related consequences of HIV, aging and comorbidities and effectiveness of interventions. Physical and psychosocial dimensions of disability are associated with self-reported health status and important to consider in HIV care. The Assessment of Motor Performance Scale (AMPS), HIV Disability Questionnaire (HDQ), and measures of frailty were examples of outcomes used in practice and research discussed at the Forum. Consideration of disability outcomes are important to consider in HIV research. Outcomes that assess disability may be considered part of a universal pool of agreed upon measures in HIV, disability and rehabilitation research. The need to utilize well-validated indices in HIV human research has similarly been articulated in the context of HIV and aging.
Knowledge translation is an integral component of the Framework. It is critical researchers consider integrated knowledge transfer and exchange of evidence. Implementation science has become increasingly important to consider methods to promote the integration of research findings into HIV health care policy and practice. Stakeholders should consider mechanisms in which to ensure research evidence is translated to inform practice, program and policy in order to enhance health outcomes of people with HIV. Examples include strategies to increase knowledge about HIV care among rehabilitation professionals through the uptake of an electronic module on HIV rehabilitation or conducting a knowledge synthesis to develop evidence-informed recommendations on rehabilitation for clinicians working in HIV care. Community-based research can also help to enhance knowledge translation and exchange with community members and organizations to ensure research is relevant, and so that it can more effectively move into practice. Finally, the nature of our Forum approach, characterized by international, multi-sectoral and interdisciplinary stakeholder engagement ensured broad translation of research on HIV, disability and rehabilitation. Development of a Knowledge Translation and Exchange (KTE) Library comprised of speaker slides, research evidence panel films, and rapporteur notes further broadened the uptake of the evidence presented at the Forum. Overall, the knowledge translation, methodological considerations, and contextual factor components of the Framework are intended to guide the research process and its translation into programs and policy.
Strengths and Limitations
Our approach establishing new and emerging research priorities involved a multi-stakeholder consultation at the International Forum on HIV and Rehabilitation Research. We engaged a broad range of international stakeholders, with expertise in issues related to HIV and rehabilitation. Second, this Framework builds on the foundational work by CWGHR who established the original six priorities in 2008. This enabled stakeholders to reflect and consider changes related to HIV knowledge and treatment, shifts in the demographic profile of populations living with HIV, and changes related to health care systems. The Framework of Research Priorities in HIV, Disability and Rehabilitation reflects the changing tide of the HIV environment as it relates to the increasing complexities of multi-morbidity in HIV and the changing health system environment, influencing access to rehabilitation care. The Framework goes beyond the medical model, focused on virological or immunological outcomes of health, to emphasize the need to consider the consequences of disease (disability) and the role for rehabilitation in addressing disability. Third, the priorities in the Framework are evidence-based, building on the foundational research that was presented at the Forum. The priorities propose further critical inquiry and examination in order to promote timely and effective rehabilitation interventions and impact policy and practice. Fourth, these priorities emerged from five different mechanisms of consultation with various stakeholders involved in the Forum. Finally, the process in which the priorities were derived involved multiple perspectives and was refined with the research priority Forum working group.
Our approach was not without limitations. Although Forum participants were asked to broadly consider new and emerging issues related to HIV and rehabilitation, discussion and feedback was framed by the panel sessions which were based on the original six research priorities developed by CWGHR. Given we built on the original priorities, we did not conduct a second scoping study of HIV and rehabilitation research. However, the vast expertise in HIV and rehabilitation among participants at the Forum which focused on knowledge translation increased the likelihood that any newly published evidence since the original scoping study were likely discussed at the Forum. The research priorities were derived largely from the Canadian and UK perspective. Hence, the applicability of the Framework to other countries including the developing context is unknown. Future International Forums may consider expanding representation from other countries where the role for rehabilitation is emerging. Lastly, the Framework provides recommendations for broad content areas in which to pursue in HIV, disability and rehabilitation research. Next steps will be for researchers and clinicians to develop specific research questions and methodologies derived from these key priorities.
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