Advancing research and practice in HIV and rehabilitation: a framework of research priorities in HIV, disability and rehabilitation.

BACKGROUND: HIV increasingly is experienced as a complex chronic illness where individuals are living longer with a range of physical, cognitive, mental and social health-related challenges associated with HIV, comorbidities and aging, a concept that may be termed 'disability'. Rehabilitation such as physical therapy and occupational therapy can help address disability and has the potential to improve quality of life in people living with HIV. Hence, the role for rehabilitation in the context of HIV, aging and comorbidities is emerging. Our aim was to establish a framework of research priorities in HIV, disability and rehabilitation. METHODS: We convened people living with HIV, clinicians, researchers, service providers, representatives from community-based organizations and policy and funding stakeholders to participate in the first International Forum on HIV and Rehabilitation Research. We conducted a multi-stakeholder consultation to identify current and emerging issues in HIV, disability and rehabilitation. Data were collated and analyzed using content analytical techniques. RESULTS: Ninety-two participants attended the Forum from Canada, United Kingdom (UK), Ireland and the United States. Situated within three overarching themes (episodic health and disability across the life course; rehabilitation; and methodological advances), the Framework of Research Priorities in HIV, Disability and Rehabilitation includes six research priorities: 1) episodic health and disability; 2) aging with HIV across the life course; 3) concurrent health conditions; 4) access to rehabilitation and models of rehabilitation service provision; 5) effectiveness of rehabilitation interventions; and 6) enhancing outcome measurement in HIV and rehabilitation research. The Framework includes methodological considerations and environmental and personal contextual factors (or lenses) through which to approach research in the field. Knowledge translation should be implemented throughout the development and application of research knowledge to inform HIV clinical practice, programming and policy. CONCLUSIONS: These priorities highlight the emerging priorities of living long-term with HIV and outline a plan for HIV and rehabilitation research in resource-rich countries such as the UK and Canada.

Considerations for conducting Web-based survey research with people living with human immunodeficiency virus using a community-based participatory approach.

BACKGROUND: Web or Internet-based surveys are increasingly popular in health survey research. However, the strengths and challenges of Web-based surveys with people living with human immunodeficiency virus (HIV) are unclear. OBJECTIVE: The aim of this article is to describe our experience piloting a cross-sectional, Web-based, self-administered survey with adults living with HIV using a community-based participatory research approach. METHODS: We piloted a Web-based survey that investigated disability and rehabilitation services use with a sample of adults living with HIV in Canada. Community organizations in five provinces emailed invitations to clients, followed by a thank you/reminder one week later. We obtained survey feedback in a structured phone interview with respondents. Participant responses were transcribed verbatim and analyzed using directed content analysis. RESULTS: Of 30 people living with HIV who accessed the survey link, 24/30 (80%) initiated and 16/30 (53%) completed the survey instrument. A total of 17 respondents participated in post-survey interviews. Participants described the survey instrument as comprehensive, suggesting content validity. The majority (13/17, 76%) felt instruction and item wording were clear and easy to understand, and found the software easy to navigate. Participants felt having a pop-up reminder directing them to missed items would be useful. CONCLUSIONS: Strengths of implementing the Web-based survey included: our community-based participatory approach, ease of software use, ability for respondents to complete the questionnaire on one's own time at one's own pace, opportunity to obtain geographic variation, and potential for respondent anonymity. Considerations for future survey implementation included: respondent burden and fatigue, the potentially sensitive nature of HIV Web-based research, data management and storage, challenges verifying informed consent, varying computer skills among respondents, and the burden on community organizations. Overall, results provide considerations for researchers conducting community-based participatory Web-based survey research with people living with HIV.

Enhancing labour force participation for people living with HIV: a multi-perspective summary of the research evidence.

Labour force participation has been identified as a critical social and health issue facing people living with HIV/AIDS (PHAs). We conducted a scoping study (a form of literature synthesis that summarizes research findings, research activity, and identifies literature strengths and gaps) on labour force participation for PHAs, guided by a community advisory committee. We summarized information from 243 peer-reviewed articles and 42 reports from the grey literature, and synthesized the evidence into a preliminary conceptual framework with five components: (1) the meaning of work, (2) key factors (barriers and facilitators) influencing labour force participation, (3) factors affecting vulnerable populations, (4) strategies and supports for returning to or sustaining work, and (5) outcomes (benefits and risks) of labour force participation for individuals and employers. The framework supports the development of labour force initiatives requiring collaborative efforts in multiple domains (health, employment, community) by PHAs, rehabilitation professionals, employers, insurers, and policy makers.

Scoping the field: identifying key research priorities in HIV and rehabilitation.

The purpose of this project was to identify key research priorities related to HIV and rehabilitation. We conducted a scoping study which included a literature review of published and grey literature, followed by focus group and interview consultations with 28 participants including people living with HIV, researchers, educators, clinicians, and policy makers with expertise in HIV and rehabilitation. Qualitative content analysis was used to identify emergent themes related to research priorities in HIV and rehabilitation. The resulting Framework of HIV and Rehabilitation Research provided an outline for approaching research in the field. The framework included three overlapping research priorities: (a) living with HIV across the lifespan, (b) disability, and (c) rehabilitation that should be viewed through environmental and/or personal contextual lenses, using different methodological approaches. Six key research priorities from this framework were identified through additional consultation with new and returning participants including: (1) disability and episodic disability, (2) concurrent health conditions aging with HIV, (3) HIV and the brain, (4) labour force and income support, (5) access to and effectiveness of rehabilitation, and (6) development and evaluation of outcome measurement tools. These priorities inform a future plan for HIV and rehabilitation research that will increase our knowledge to enhance practice, programming and policy for people living with HIV.

HIV and rehabilitation: development of a conceptual framework for curriculum planning.

The overall purpose of this paper is to present the development of a conceptual framework of existing HIV curricula and educational resources on to inform future curriculum planning for the education of rehabilitation professionals on rehabilitation in the context of HIV/AIDS. We conducted a scoping review of the literature from 1980 onwards to identify existing HIV curricula and resources used with current or future health professionals. Preliminary findings were reviewed with a national Advisory Committee and a framework was developed to inform future curriculum planning. The Conceptual Framework of Existing HIV Curricula for Health Professionals classified curricula based on whether it was interprofessional or uniprofessional, and targeted to rehabilitation professionals or more broadly included other health professionals. This framework consisted of four intersecting components that represented different types of curricula: (a) interprofessional HIV curricula specific to rehabilitation professionals, (b) uniprofessional HIV curricula specific to rehabilitation professionals, (c) interprofessional HIV curricula for health professionals, and (d) uniprofessional HIV curricula for health professionals. Evidence from the framework suggested that an interprofessional HIV curriculum designed for rehabilitation professionals may be an ideal model from which to build future HIV rehabilitation curricula. In summary, a range of HIV curricula exist that vary in the type of educational approach and the range of health professionals targeted. Future development, implementation, and evaluation of an interprofessional education curriculum will help to increase knowledge and capacity among current and future rehabilitation professionals so that they may better meet the needs of people living with HIV/AIDS in Canada.

Perceptions of HIV-related health services in Zambia for people with disabilities who are HIV-positive.

INTRODUCTION: Despite the emerging body of literature on increased vulnerability to HIV among people with disabilities (PWDs), there is a dearth of evidence related to experiences of PWDs who have become HIV-positive. This priority was identified by a disability advocacy organization in Lusaka, Zambia, where the prevalence of HIV and of disability is each approximately 15%. The purpose of this study was to explore perceptions and experiences of HIV-related health services for PWDs who are also living with HIV in Lusaka, Zambia. METHODS: This qualitative, interpretive study involved in-depth, semi-structured, one-on-one interviews with two groups of participants in Lusaka, Zambia: 21 PWDs who had become HIV-positive, and 11 people working in HIV and/or disability. PWDs had physical, hearing, visual and/or intellectual impairments. Interviews were conducted in English, Nyanja, Bemba or Zambian sign language. Descriptive and thematic analyses were conducted by a multidisciplinary, international research team. RESULTS: Participants described their experiences with HIV-related health services in terms of the challenges they faced. In particular, they encountered three main challenges while seeking care and treatment: (1) disability-related discrimination heightened when seeking HIV services, (2) communication barriers and related concerns with confidentiality, and (3) movement and mobility challenges related to seeking care and collecting antiretroviral therapy. These experiences were further shaped by participants' profound concerns about poverty and unmet basic needs. DISCUSSION: This study demonstrates how PWDs who are HIV-positive have the same HIV care, treatment and support needs as able-bodied counterparts, but face avoidable barriers to care. Many challenges mirror concerns identified with HIV prevention, suggesting that efforts to promote inclusion and reduce stigma could have widespread benefits. CONCLUSIONS: Despite the growing body of literature on increased risk of exposure to HIV among HIV-negative PWDs, this is the first published study to examine perceptions of testing, treatment and other HIV services for PWDs who have become HIV-positive. Findings reveal far-reaching opportunities for improving the quality of care for this population.

Evidence-informed recommendations for rehabilitation with older adults living with HIV: a knowledge synthesis.

OBJECTIVE: Our aim was to develop evidence-informed recommendations for rehabilitation with older adults living with HIV. DESIGN: We conducted a knowledge synthesis, combining research evidence specific to HIV, rehabilitation and ageing, with evidence on rehabilitation interventions for common comorbidities experienced by older adults with HIV. METHODS: We included highly relevant HIV-specific research addressing rehabilitation and ageing (stream A) and high-quality evidence on the effectiveness of rehabilitation interventions for common comorbidities experienced by older adults ageing with HIV (stream B). We extracted and synthesised relevant data from the evidence to draft evidence-informed recommendations for rehabilitation. Draft recommendations were refined based on people living with HIV (PLHIV) and clinician experience, values and preferences, reviewed by an interprofessional team for Grading of Recommendations Assessment, Development, and Evaluation (GRADE) (quality) rating and revision and then circulated to PLHIV and clinicians for external endorsement and final refinement. We then devised overarching recommendations to broadly guide rehabilitation with older adults living with HIV. RESULTS: This synthesis yielded 8 overarching and 52 specific recommendations. Thirty-six specific recommendations were derived from 108 moderate-level or high-level research articles (meta-analyses and systematic reviews) that described the effectiveness of rehabilitation interventions for comorbidities that may be experienced by older adults with HIV. Recommendations addressed rehabilitation interventions across eight health conditions: bone and joint disorders, cancer, stroke, cardiovascular disease, mental health challenges, cognitive impairments, chronic obstructive pulmonary disease and diabetes. Sixteen specific recommendations were derived from 42 research articles specific to rehabilitation with older adults with HIV. The quality of evidence from which these recommendations were derived was either low or very low, consisting primarily of narrative reviews or descriptive studies with small sample sizes. Recommendations addressed approaches to rehabilitation assessment and interventions, and contextual factors to consider for rehabilitation with older adults living with HIV. CONCLUSIONS: These evidence-informed recommendations provide a guide for rehabilitation with older adults living with HIV.

Developing clinical practice guidelines in HIV rehabilitation: process recommendations and guiding principles.

Our purpose was to develop process recommendations and guiding principles for future clinical practice guidelines in HIV rehabilitation. We conducted a scoping study that included focus group and interview consultations with 28 participants including people living with HIV, researchers, clinicians, educators, and policy stakeholders with expertise in HIV and rehabilitation. We used qualitative content analysis techniques to identify emergent themes related to the development of clinical practice guidelines. Results included seven recommendations for the process of developing clinical practice guidelines in HIV rehabilitation that spanned areas of flexibility, scope, adopting existing evidence from concurrent health conditions, format, interprofessional approach to development and implementation, terminology, and knowledge translation. Three guiding principles emerged to inform the philosophical approach for guideline development. These findings serve as a foundation for the development of clinical practice guidelines in HIV rehabilitation to enhance the care and treatment of people living with HIV.

HIV, disability and discrimination: making the links in international and domestic human rights law.

Stigma and discrimination constitute one of the greatest barriers to dealing effectively with the HIV epidemic, underlying a range of human rights violations and hindering access to prevention, care, treatment and support. There is some existing protection against HIV-based discrimination under international law, but the extent of states' obligations to address such discrimination has not been comprehensively addressed in an international instrument.The United Nations Convention on the Rights of Persons with Disabilities entered into force in May 2008. As countries ratify the convention, they are required to amend national laws and policies to give greater protection to the human rights of people with disabilities, including abolishing disability-based discrimination by the state and protecting persons against such discrimination by others. The Disability Convention addresses many of the issues faced by people living with HIV (PLHIV) but does not explicitly include HIV or AIDS within its open-ended definition of "disability".Therefore, the advent of the Disability Convention prompts us to consider the links between HIV and disability and, specifically, to consider the opportunities it and other legal mechanisms, international or domestic, may afford for advancing the human rights of PLHIV facing human rights infringements. We do so in the belief that the movement for human rights is stronger when constituencies with so many common and overlapping interests are united, and that respectful and strategic collaboration ultimately strengthens both the disability rights and the AIDS movements.In this article, we first examine the links between HIV and disability. We then provide a brief overview of how international human rights law has treated both disability and HIV/AIDS. We note some of the different ways in which national anti-discrimination laws have reflected the links between HIV and disability, illustrated with representative examples from a number of countries. Finally, we offer some conclusions and recommendations about ways forward for collaboration between HIV and disability rights advocates in advancing human rights at the international level, including the use of the new tool that is the Disability Convention. We hope these reflections will promote further discussion across movements, ultimately to the benefit of all persons with disabilities and/or HIV.