Introduction

As of June 2007, an estimated 63,000 people were living with HIV in Canada (Public Health Agency of Canada 2007a). Canada is one of the many industrialized nations where there has been an improvement in health and life expectancy for those who have access to, and can tolerate, combination antiretroviral therapy (Palella et al. 1998). As a result, more individuals are living with a range of health-related consequences of HIV, its associated conditions or treatments. A remarkably high prevalence of disablement exists among people living with HIV in Canada. A survey of adults living with HIV in British Columbia indicated that at least 80% of respondents experienced a minimum of one impairment, activity limitation or participation restriction in the past month (Rusch et al. 2004a). Impairments are defined as any problems at the level of the body part, structure or function (e.g., pain, weakness), activity limitations include any difficulties carrying out a task or action (e.g., walking, using stairs) and participation restrictions include any difficulties experienced in a life situation (e.g., employment; World Health Organization 2001). The ways in which disablement manifests may be unpredictable and episodic in nature (O’Brien et al. 2008a). As a result, there is a need for health care communities to respond to the changing needs of people living with HIV and specifically the increasing role for rehabilitation (Worthington et al. 2005).

Rehabilitation may be broadly defined as any services and activities that address or prevent impairments, activity limitations and participations restrictions experienced by an individual (Worthington et al. 2005). Rehabilitation professionals can assist people living with HIV in managing disablement such as adverse effects of medications, fatigue, pain, neuropathy, cognitive problems as well as income and vocational support. Traditionally, however, rehabilitation professionals have not been actively involved in HIV clinical practice and research. Only a minority of physical therapists, occupational therapists and speech-language pathologists work with HIV clients (Worthington et al. 2008). Furthermore, with the exception of the small amount of evidence that documents physical disablement (O’Connell and Levinson 1991; O’Dell 1993; Rusch et al. 2004a) and limitations in role function (Crystal et al. 2000; Levinson and O’Connell 1991; Rusch et al. 2004a), relatively little research focuses on rehabilitation in HIV care. This field is still emerging. Understanding the research priorities in rehabilitation and HIV is an initial step to building research evidence that will improve care, treatment and support.

The purpose of this project was to identify key research priorities in HIV and rehabilitation that will advance policy and practice for people living with HIV.

Methods

We conducted a scoping study to examine the field of HIV and rehabilitation. Scoping studies aim to map key concepts underpinning a research area and the main sources and types of evidence available. They include a literature review and consultation phase that may be used to (a) examine the extent, range and nature of research activity, (b) determine the value of undertaking a full systematic review, (c) summarize and disseminate research findings, or (d) identify research gaps in the existing literature (Arksey and O’Malley 2005).

This scoping study included two major phases: a literature review followed by a series of focus groups and key informant interviews. This initiative was conducted in tandem with another study that identified guiding principles and themes for the development of best practice guidelines for HIV and rehabilitation (O’Brien et al. 2008c). We obtained ethics approval from McMaster University, Hamilton, ON. All elements of this research were guided by the Canadian Working Group on HIV and Rehabilitation (CWGHR), Research, Education and Practice Advisory Committee (REPAC). An overview of the scoping study methodology is provided in Fig. 1.

Fig. 1
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Overview of scoping study methodology

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Phase 1: Literature Review

We conducted a literature review of published (e.g., peer reviewed journal articles) and grey literature (e.g., technical reports, position papers) to explore what is known about HIV and rehabilitation. We specifically sought to identify strengths and gaps in HIV and rehabilitation research. The review was comprised of the following phases:

  1. 1.

    We searched electronic databases including MEDLINE, CINAHL, EMBASE, PsychINFO, reference lists, existing networks, reports and position papers from relevant organizations and conferences published from 1980 to January 2007. The search strategy yielded 4724 abstracts, of which 1260 from MEDLINE were comprehensively reviewed. While the other databases may have contributed relevant information to this review, we felt that the MEDLINE search provided an adequate picture of the literature on HIV and rehabilitation allowing us to inform the consultation phase. Abstracts from the other databases (n = 3,464), and those relating to drug rehabilitation, developing countries and pharmacological interventions, including complementary or alternative medications, were deferred for future consideration.

  2. 2.

    Two authors (KO and AW) reviewed abstracts to determine which studies addressed the research question. We identified 615 relevant abstracts and coded their content according to the Episodic Disability Framework which considers dimensions, contextual factors, and triggers of disability (O’Brien et al. 2008a). Of these, 146 articles identified to ‘best fit’ the HIV and rehabilitation question were pulled for full review, and classified as addressing: disablement needs, effectiveness of interventions or roles of rehabilitation professionals.

  3. 3.

    We extracted data from the 146 included articles and entered these onto a data charting form using Microsoft Excel. Data extracted included author, year, study location, intervention type and comparator if any, duration of the intervention, study populations, aims of the study, methodology, outcome measures, important results, and important considerations for future research.

  4. 4.

    We summarized the extracted data and reported on the strengths and gaps of HIV and rehabilitation research.

Phase 2: Key Informant Consultation

Building on the literature review, we conducted a series of focus groups and key informant interviews with a range of national and international stakeholders including people living with HIV, researchers, educators, clinicians and policy makers between June and October 2007. Potential key informants were identified through consultation with CWGHR’s REPAC and were recruited by authors (KO and AW). We provided an informal summary of findings on the strengths and shortcomings of the evidence found in Phase 1 and asked key informants what they thought were strengths and gaps in HIV and rehabilitation research. Specifically we asked them to (1) identify important issues in HIV and rehabilitation practice, research and policy, and (2) provide suggestions for how these issues might be best addressed. Focus groups and interviews were audiotaped and later transcribed verbatim. Field notes were taken throughout to supplement the thematic analysis.

We used a line by line coding procedure to identify key themes that related to HIV and rehabilitation (Strauss and Corbin 1998) and a constant comparative method of analysis whereby data collection and analysis occurred simultaneously. We categorized data from the focus groups and interviews and compared them systematically with new emerging categories that related to HIV and rehabilitation research, looking for any similarities or differences that arose in the data. We devised a draft framework of HIV and rehabilitation research when all data from the interviews and focus groups were analyzed.

A final validity check phase included reporting back to participants and refining results based on their feedback (November 2007 to February 2008). A draft framework of HIV and rehabilitation research was vetted in a full day consultation workshop held on February 29, 2008. Seventeen participants including people living with HIV, rehabilitation and other health professionals, HIV researchers, representatives from HIV research organizations, and other AIDS service organizations attended from across Canada including British Columbia, Alberta, Manitoba, Ontario, and Nova Scotia. Brief presentations were given on work to date followed by group discussion and consensus building to identify recommendations on the key research priorities for advancing practice and policy.

Results

Phase 1: Literature Review

Of the 146 articles pulled for inclusion and data extraction, 91 were published after combination antiretroviral therapy became standard in Canada (1997 onwards) and 55 were published prior to this era.

Disablement Needs

Fifty-eight of the articles were classified as having described the disablement needs experienced by people living with HIV. Main types of disablement documented were physical and mental health impairments, and activity limitations, such as fatigue, reduced physical function (activities of daily living), stress, depression and the psychosocial impact of living with HIV (Cleary et al. 1993; Fleishman et al. 1994; Rusch et al. 2004a, b; Wilson and Cleary 1996). Disablement was primarily associated with musculoskeletal and neurological conditions such as lipodystrophy (Robinson 2004) and neuropathy (O’Dell 1996), respectively. Disablement needs were primarily measured using HIV-specific health-related quality of life instruments, many of which were modified from past generic health status measures (Tsasis 2000). Early literature documented the unmet needs of people living with HIV (Piette et al. 1993).

Rehabilitation Interventions

Sixty-three articles described interventions that may be used to address HIV-related disablement. Most of these (86%) were published after combination antiretroviral therapy became standard in Canada. The majority of these articles were randomized controlled trials, many of which were included in two systematic reviews that documented the benefits of aerobic, resistive or combined aerobic and resistive exercise for some outcomes of cardiopulmonary fitness, strength, weight and body composition, and quality of life for medically stable adults living with HIV (O’Brien et al. 2004, 2006). Other studies documented the positive impact of vocational rehabilitation interventions (Braveman et al. 2006; Kielhofner et al. 2004), cognitive behavioral programs (Chan et al. 2005), self care strategies (Eller et al. 2005), and massage therapy (Birk et al. 2000; Shor-Posner et al. 2004, 2006) on health outcomes for adults with HIV. Despite their widespread use, the effectiveness of complementary and alternative therapies has not yet been established (Mills et al. 2005).

Roles of Rehabilitation Professionals in HIV Care

Twenty-five articles described the roles of rehabilitation professionals in the care and treatment of people living with HIV. The majority of these articles (68%) were published prior to 1997 and discussed rehabilitation primarily in acute or palliative care settings (O’Dell 1993). Many described the benefits of an interprofessional rehabilitation team or program in HIV care and treatment. Some evidence also documented the knowledge, attitudes and practices of rehabilitation professionals (Atchison et al. 1990; Worthington et al. 2008) and students (Balogun et al. 1998; Vincent and Schkade 1990) as a way to identify HIV learning needs of current and future rehabilitation professionals.

Most of the articles (66%) included men participants as opposed to women, children, or older adults living with HIV. Given our inclusion criteria, most articles reported on studies carried out in the United States or Canada (60%) whereas others were carried out in Europe (10%) or were review articles and/or did not report a specific geographical region (30%). Almost half of the articles were narrative reviews, opinion pieces or letters to the editor (45%) as opposed to systematic reviews and studies involving primary qualitative or quantitative data collection.

In summary, the literature review revealed increasing evidence on rehabilitation interventions in the post combination antiretroviral era. However, the majority of this research was on the effect of exercise, with little evidence on the effectiveness of other rehabilitation interventions. The call for rehabilitation came early in the epidemic, highlighting the important role for rehabilitation in the care and treatment of people living with HIV. However, this literature was primarily within the acute and palliative care context, with little exploration on the role of rehabilitation in health promotion or disability prevention. Finally, much of the disability literature was focused on physical impairments associated with opportunistic infections, rather than the broad spectrum of disablement including social inclusion and uncertainty.

Phase 2: Key Informant Consultation

Building on phase 1, we conducted two focus groups in June and August 2007 with a total of 16 participants. We also conducted 10 individual key informant interviews (either face-to-face or telephone) between July and October 2007 with a total of 12 participants (1 interview consisted of 3 key informants). Participants included people living with HIV, researchers, educators, clinicians and policy makers with expertise in HIV and rehabilitation research and represented a range of geographical areas across Canada and the United Kingdom.

Framework of HIV and Rehabilitation Research

Based on gaps in evidence identified in the literature review and themes that emerged from the consultations, we formulated the Framework of HIV and Rehabilitation Research (Fig. 2). This framework outlined a way to approach future research in this area with three main overlapping research priorities: HIV across the lifespan (Box A), disability (Box B), and rehabilitation in the context of HIV (Box C) that should be explored through a variety of environmental and/or personal contextual lenses (Box D), using different methodological approaches (Box E). We describe each component of the framework. For more details including supportive quotes from this consultation and example research questions, please see the detailed report on the CWGHR website (www.hivandrehab.ca).

Fig. 2
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Framework of HIV and rehabilitation research

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Research Priorities

(A)HIV Across the Lifespan. Key informants described three main research priorities that related to living with HIV across the lifespan: (a) HIV and aging, (b) concurrent health conditions aging with HIV, and (c) changing outlook over time (Fig. 2, Box A).

Key informants described the uncertainty of aging with HIV. Those who were diagnosed with HIV at birth may be living with various types of disablement as they enter adolescence and adulthood; whereas those diagnosed prior to the advent of antiretroviral therapy and living with HIV for over 15 years might be unsure whether their disablement is attributed to HIV, its associated conditions, adverse effects of treatment, aging, or a combination. Informants spoke of the potential to learn from the broader field of research on aging and apply it to HIV.

As individuals age with HIV, many may experience early or premature onset of concurrent health conditions such as heart disease, diabetes, increased cholesterol, metabolic disorders, obesity, stroke, transplants, multiple scleroris and bone and joint disorders (osteoporosis, osteoarthritis, inflammatory arthritis). Research should consider the physical, social and psychological impact of aging with HIV, concurrent health conditions, impacts of interactions and side effects of medications, and the added complexity of disablement that may arise from these conditions as they accrue over time.

Key informants described the importance of exploring how one’s outlook living with HIV changes over time. After planning for imminent death prior to the advent of antiretroviral therapy, to now faced with having to ‘re-invent’ onself and plan for the future, research could explore how this change in outlook impacts the overall health of individuals.

(B)Disability. Key informants described a range of research priorities that related to exploring impairments, activity limitations and participation restrictions that people living with HIV experience (Fig. 2, Box B). Four main areas were identified:

  1. (a)

    Lipodystrophy including the extent and impact of body composition changes, body image, wasting versus obesity, and metabolic issues;

  2. (b)

    HIV and the brain including exploring neurocognitive impairments associated with HIV and its medical treatments, and the impact these might have on functional capacity. Examples include mild to moderate memory and concentration problems, minor cognitive motor disorder(s), HIV dementia; and the impact of rehabilitation cognitive interventions.

  3. (c)

    Peripheral neuropathy; and,

  4. (d)

    Bone and joint disorders including the prevalence and impact of osteopenia, osteoporosis, joint replacement, and arthritis.

Although some of these topics were captured within the existing literature, key informants highlighted the need to explore the nature and extent of these impairments, their impact on daily function (activity limitations), and the types of interventions that may reduce or prevent this disablement.

Labour force and income support emerged as a specific research priority related to participation restrictions. Key informants described the need to explore workplace accommodation for those who would like to return or remain in the workforce, and the need to evaluate a flexible labour force and income support model. Recommendations were raised to investigate the ‘success stories’ and learn from existing return-to/stay-at-work and income support programs in other jurisdictions across Canada and the UK. Finally, the importance of exploring the differences between barriers and facilitators to work in urban versus rural environments was also highlighted.

Key informants identified other areas of participation that required further exploration including social networks, housing, income support, and availability of/access to health and social services. They identified the need to explore the extent to which people living with HIV are participating in society, barriers and facilitators to participation, and recommendations of how service delivery could be improved to enhance social inclusion.

(C)Rehabilitation in the Context of HIV. Three main research priorities emerged related to rehabilitation: (a) knowledge of and access to rehabilitation among people living with HIV, (b) effectiveness of rehabilitation prevention and treatment strategies, and (c) impact of education on current and future rehabilitation professionals and other health providers (Fig. 2, Box C).

Given the overwhelming prevalence and diverse disablement experienced, key informants felt research should explore the knowledge of rehabilitation among people living with HIV. One suggestion was to map the rehabilitation services available to people living with HIV in Canada.

Key informants expressed the need to explore how many people living with HIV in Canada access rehabilitation, reasons for accessing these services, and any success these interventions may have in reducing disability. Barriers to accessing rehabilitation and the potential impact these barriers (and lack of access) have on a person’s overall health was also important.

A second research priority was determining the effectiveness of rehabilitation strategies in preventing or reducing disability. This was also identified in the literature review phase of the study.

The third rehabilitation research priority was to explore the impact that educating current and future rehabilitation and other health professionals may have for people living with HIV. While curricula and courses that teach about HIV-related rehabilitation exist, few have been formally evaluated (O’Brien et al. 2008b). Key informants articulated the importance of evaluating the impact that education has on the knowledge, attitudes and practices of these health professionals, and whether education may translate into enhanced access and delivery of HIV rehabilitation services.

Furthermore, education research should go beyond traditional rehabilitation professionals and attempt to engage referring professionals (e.g., physicians, social workers, AIDS Service Organizations) on the roles of rehabilitation to further enhance access to rehabilitation.

(A–B)Episodic Disability. Two overlapping priorities of disability and HIV across the lifespan produced a new research priority termed episodic disability (Fig. 2, Box A–B). Key informants described the need to track the major and minor episodes of disability, explore the etiology of episodic disability, and the long term impact of these episodes over time.

Contextual Research Lenses

In addition to the content-related priorities of research, key informants described environmental and personal lenses in which the above research areas could be addressed (Fig. 2, Box D).

Environmental Contextual Lenses. Each research question could be explored from a number of environmental perspectives including (1) urban and rural contexts (2) applicability of disability and rehabilitation in developing countries to the Canadian context, and (3) environmental barriers related to the stigma, legal, policy and social justice issues faced by people living with HIV, particularly among those living in poverty or with multiple vulnerabilities that continue to prevent individuals from fully participating in society. Future research should explore how these environmental barriers pose challenges to accessing and implementing rehabilitation services, maintaining financial independence, or participating in the labour force.

Personal Contextual Lenses. Similar to the shortcomings identified in the literature review, key informants described the imbalance of research undertaken with men compared to women and children. Informants emphasized the need to explore disability and rehabilitation specific to women, including potential differences related to life roles and effectiveness of rehabilitation interventions.

Given individuals are living longer with HIV, key informants stressed the need to better understand the multitude of concurrent health conditions with HIV, the associated disablement, and strategies to address these challenges.

Finally, key informants highlighted the potential differences in disability and rehabilitation across different ethnocultural backgrounds. Future research should include exploration of research questions through an ethnocultural lens.

Methodological Approaches

The final component of the framework included methodological considerations for embarking upon this new program of research. These included: adopting mixed methods with qualitative and quantitative study designs, considering an HIV-specific versus cross-disease approach, incorporating longitudinal study designs to explore disability over time, increasing the number of rehabilitation treatment effectiveness studies, and developing validated measurement tools in HIV-disability and rehabilitation (Fig. 2, Box E).

Key informants emphasized the strength of the Canadian Working Group on HIV and Rehabilitation (CWGHR) which approaches research from both cross-illness and cross-disability perspectives. For example, several disease groups such as mental health, arthritis and multiple sclerosis participate in CWGHR’s work on labour force and income support. This approach has provided a ‘strength in numbers’ approach so that findings may have broader implications for those living with episodic illnesses.

Key informants highlighted the paucity of literature pertaining to treatment strategies and the need to document the effect of various rehabilitation interventions to reduce or prevent HIV-disability. Findings from this research may further support the need for increased access to rehabilitation for this population.

Another methodological priority highlighted by informants was the need to develop and validate measurement tools to adequately describe the HIV-disability experience so that we can accurately and reliably describe and evaluate the impact of different interventions.

Key Research Priorities for Future HIV and Rehabilitation Research

While all of the above areas in the framework were considered important, for the purposes of establishing next steps, we sought to identify key priorities that could translate into a plan for future research. Six key research priorities were identified among participants in a one day validity check consultation workshop. Results from this consultation are summarized in Fig. 3.

Fig. 3
figure 3

Six key research priorities for future HIV and rehabilitation research

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Key research priorities included: (1) disability and episodic disability, (2) concurrent health conditions aging with HIV, (3) HIV and the brain, (4) labour force participation and income support, (5) access to and effectiveness of rehabilitation, and (6) measurement tool identification, development and assessment. These six priorities outline a future plan for HIV and rehabilitation research that spans research topics, methodological approaches, and potential outcomes to inform practice, policy and programming and positively impact the health of people living with HIV.

Discussion

Despite the paucity of evidence on HIV and rehabilitation, existing literature provides a foundation for future research in this area. Strengths in the published literature included the documented range of HIV impairments and activity limitations, and the potential benefits of exercise. Areas in which to develop future research included evaluating the effect of rehabilitation interventions (beyond exercise), establishing the prevalence of disablement (beyond physical impairments), addressing the impact of aging and emerging concurrent health conditions, and the role of rehabilitation in the post-combination antiretroviral therapy era. These gaps were verified and expanded upon by key informants in Phase 2 to form the Framework of HIV and Rehabilitation Research (Fig. 2). This is the first HIV and rehabilitation framework to be devised using comprehensive scoping study methodology. Further consultation with stakeholders yielded Six Key Research Priorities highlighting important research topics from this framework, proposing potential methodologies, and outcomes (Fig. 3).

Many areas of overlap exist within these priorities, and the outcomes and approaches presented may not be entirely inclusive. Collectively this plan provides an example of areas and ways stakeholders may wish to pursue future HIV and rehabilitation research to address gaps in the field. We discuss the six key priorities as they relate to existing HIV and rehabilitation literature.

Disability and Episodic Disability

Preliminary work documented the nature and extent of disability experienced by adults living with HIV (Rusch et al. 2004a, b). However, this study was limited to one province in Canada thus the national prevalence and incidence of HIV-related disability remains unknown. Further, disability is episodic and unpredictable in nature (O’Brien et al. 2008a). While early quantitative evidence suggested the episodic nature of impairments (Crystal and Sambamoorthi 1996), future research will help determine the nature and extent of these episodes, whether they are cumulative, and how daily fluctuations in health impact one’s overall health.

Concurrent Health Conditions Aging with HIV

As of December 2006, 12.2% persons with AIDS in Canada were 50 or over and the incidence of HIV is rising among older adults from 7.6% in 1998 to 13.8% in 2006 (Public Health Agency of Canada 2007b). As individuals live longer with HIV, they may be living with accumulating concurrent health conditions that add increasing difficulty to an already complex illness. Emerging research documenting the experience of aging with HIV suggests increased stigma (Emlet 2006), frequency and severity of distal polyneuropathy (Watters et al. 2004), and cognitive impairments among those 50 years and over (Karpiak et al. 2006; Valcour et al. 2004). Early onset of diseases such as osteoporosis, avascular necrosis, heart disease, and diabetes related to lipodystrophy are also of increasing concern (Gross 2008). Future research will help to determine the health-related consequences associated with aging, concurrent conditions and how rehabilitation can help to address or prevent resulting disablement.

HIV and the Brain

Rehabilitation professionals have a role to play in promoting the mental health of people living with HIV. While emerging work documented improvements in mental health and quality of life with cognitive-behavioral (Crepaz et al. 2008) and stress management interventions (Scott-Sheldon et al. 2008), further research should explore the impact of these interventions at different stages of HIV among those with mild to moderate memory or concentration impairments, determine the long term outcomes associated with these interventions, and whether they assist in preventing episodes associated with the brain.

Labour Force Participation and Income Support

Individuals may want to return to work or remain in the workforce despite their HIV status. Recent evidence identified facilitators and barriers to returning to work for people living with HIV (Braveman et al. 2006; Ferrier and Lavis 2003; Nixon and Renwick 2003). Further research should explore these issues from an episodic illness and cross-disability perspective among those who might have similar challenges to labour force participation. Evaluation of a flexible income support model that allows individuals to work during periods of wellness will help to advance new policy related to employment and income support (Canadian Working Group on HIV and Rehabilitation 2008).

Access to and Effectiveness of Rehabilitation

Despite the need for rehabilitation, few rehabilitation professionals are working with people living with HIV (Worthington et al. 2008). HIV specialists tend to refer to social workers and AIDS service organizations for social participation restrictions rather than to rehabilitation professionals who have been trained to address impairments and activity limitations associated with HIV (Worthington et al. 2006). Furthermore, the extent to which people living with HIV understand and access rehabilitation is less clear (Worthington et al. 2008). Hence, future research should explore the number of people living with HIV who are accessing rehabilitation, types of rehabilitation accessed, barriers and facilitators to accessing rehabilitation, and the impact that rehabilitation interventions have on reducing disability and enhancing quality of life for people living with HIV.

Measurement Tools

No known HIV-specific instruments have been developed that comprehensively capture the breadth and depth of disability experienced by people living with HIV (O’Brien et al. 2007). With increasing emphasis on the importance of documenting the nature and extent of disability, it is necessary to develop instruments that will accurately and reliably describe disability and evaluate the effect of rehabilitation interventions. In situations where existing generic or HIV-specific measures may already exist, researchers and clinicians should ensure that a given instrument is sensible, reliable and valid for specific research questions with adults living with HIV.

These six research priorities offer ways to better document HIV-related disability, track its episodic nature and evaluate the effect of interventions. By addressing these research priorities we will begin to better inform practice, programming and policies for people living with HIV. While identification of these priorities emerged primarily through consultation with stakeholders in Canada, the extent to which they may be applicable to other countries is unknown; however they likely apply to other environments with access to antiretroviral therapy. Addressing these research priorities in the developing world context may also provide valuable information for rehabilitation services among those without access to medications. Conversely we can learn from low-cost rehabilitation and community care models in developing countries.

This study was the first to use scoping study methodology to identify research priorities in HIV and rehabilitation. Strengths and challenges emerged with this approach. First, scoping methodology allowed us to systematically search and analyze existing literature while seeking expert opinions and perspectives from stakeholders in the field. Key informant consultation was integral to this process given the field of published HIV and rehabilitation research is still emerging. Second, because we used a broad search strategy to capture all known literature in the field, our search strategy yielded a large number of abstracts (n = 4724), of which we chose to focus on MEDLINE. While other databases may have yielded additional literature, we felt this database provided an overall basis from which to inform our future consultation phase. Another challenge was the large amount of grey literature that emerged from our review. Because no methodological quality review occurs with scoping studies (Arksey and O’Malley 2005), we were uncertain how to weigh grey literature when identifying strengths and shortcomings of the evidence. However, we found grey and published literature appeared to possess similar strengths and shortcomings, which were further confirmed in the key informant consultation. Third, we focused on literature from developed countries including Canada, United States and Europe due to the accessibility of antiretroviral therapy. However, differences in social supports, access to health services, labour force and income support policies across environments may still exist, requiring one to consider the applicability of findings in a given context. Next, stakeholders consulted in this research were knowledgeable about HIV and rehabilitation; consultation with those less familiar with the field might have yielded priorities not captured here. Nevertheless, the validity check consultation with new and returning key informants enabled us to share preliminary findings with the HIV community, refine the Framework of HIV and Rehabilitation Research, and further prioritize findings in the form of Six Key Research Priorities for Future HIV Rehabilitation Research. Finally, we purposely kept the research priorities in this study broad in nature. Next steps will be for researchers and clinicians to develop specific research questions based on these key priorities to carry out the proposed research.

Conclusions

There is a need for increased research in HIV and rehabilitation. This study yielded six key research priorities that include exploring: disability and episodic disability, concurrent health conditions aging with HIV, HIV and the brain, labour force participation and income support, access to and effectiveness of rehabilitation, and the development and assessment of outcome measurement tools. These priorities were identified through a collaborative and comprehensive scoping study that integrated existing literature with perspectives of multiple stakeholders across Canada and the United Kingdom. These priorities outline a future plan for HIV and rehabilitation research that will help increase our knowledge to enhance practice, programming and policy for people living with HIV.