Larry Baxter

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.

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

BackgroundHIV 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.MethodsWe 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.ResultsNinety-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.ConclusionsThese 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.

Barriers to gender-equitable HIV testing: going beyond routine screening for pregnant women in Nova Scotia, Canada

BackgroundWomen and men face different gender-based health inequities in relation to HIV, including HIV testing as well as different challenges in accessing HIV care, treatment and support programs and services when testing HIV-positive. In this article, we discuss the findings of a mixed methods study exploring the various individual and structural barriers and facilitators to HIV counselling and testing experienced among a sample of adult women and men living in Nova Scotia, Canada.MethodsDrawing from testing demographics, qualitative interview data and a review of existing testing policies and research, this paper focuses on understanding the gendered health inequities and their implications for HIV testing rates and behaviours in Nova Scotia.ResultsThe findings of this research serve as the basis to further our understanding of gender as a key determinant of health in relation to HIV testing. Recognizing gender as a key determinant of health in terms of both vulnerability to HIV and access to testing, this paper explores how gender intersects with health equity issues such as access to HIV testing, stigma and discrimination, and sexual behaviours and relationships.ConclusionsDrawing on the current gender and HIV literatures, in conjunction with our data, we argue that an enhanced, gender-based, context-dependent approach to HIV counselling and testing service provision is required in order to address the health equity needs of diverse groups of women and men living in various settings. Further, we argue that enhanced HIV testing efforts must be inclusive of both men and women, addressing uniquely gendered barriers to accessing HIV counselling and testing services and in the process moving beyond routine HIV testing for pregnant women.

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.

‘I’m still here, I’m still alive’: Understanding successful aging in the context of HIV:

As people living with HIV (PLWH) live longer, increased understanding of individuals’ values and perceptions of successful aging can assist health providers in working with PLWH to set meaningful goals as they age. The purpose of this qualitative study was to understand how PLWH define successful aging and their perceptions of contributors to successful aging. Fourteen men and ten women over the age of 50 years (mean age 57 years; mean time since diagnosis 18 years) participated in individual interviews. Interviews were analyzed using directed content analysis. Six themes emerged: accepting limitations, staying positive, maintaining social supports, taking responsibility, living a healthy lifestyle, and engaging in meaningful activities. The participants emphasized individual control. This highlights the importance of working with PLWH to understand their values and aspirations, and create patient-centered goals. From a research perspective this reinforces calls to include the subjective experiences of older adults in developing successful aging criteria.

Collaborative development of an educational resource on rehabilitation for people living with HIV

Abstract Objective: The objective of this study is to describe the collaborative development of a rehabilitation guide for people living with human immunodeficiency virus (HIV) which was adapted from an online resource for clinicians. Methods: We adapted a comprehensive evidence-informed online clinical resource for people living with HIV using a three-phase participatory process. In Phase 1, we interviewed 26 clinicians and 16 people living with HIV to gather recommendations on how to adapt and format the content to benefit people living with HIV. In Phase 2, we adapted the patient education resource using the recommendations that emerged from Phase 1. Phase 3 consisted of comprehensive stakeholder review of the revised resource on the adaptability, usability, communicability, and relevance of the information. Stakeholders participated in an interview to obtain in-depth information on their perspectives. Transcribed interviews underwent qualitative content analysis. Results: Stakeholders indicated that the e-guide had utility for people living with HIV, community HIV service organizations, and care providers. Conclusion: Engaging people living with HIV resulted in a more relevant and meaningful resource that incorporated patients’ values, needs, and preferences. Implications: Involving multiple stakeholders and user groups in the adaptation and evaluation of online patient education resources can assist in meeting patients’ needs through increasing the relevance, organization and presentation of the content, and incorporating patients’ values and needs. Implications for Rehabilitation Online patient education resources should be adapted in order to maximize relevance and meaningfulness to patients. Involving multiple stakeholders in the adaptation and evaluation of online patient education resources can assist in meeting patients’ needs. Involving multiple stakeholders increases the relevance, organization and presentation of the content and allows the incorporation of patient values and needs. This collaborative approach with an emphasis on meaningful participation of patients and community may be of interest to others interested in promoting knowledge translation.

Trajectories of Episodic Disability in People Aging with HIV: A Longitudinal Qualitative Study

People living with HIV may experience disability which is episodic in nature, characterized by periods of wellness and illness. The purpose of this longitudinal qualitative study was to understand how the episodic nature of HIV and the associated uncertainty shape the disability experience of older adults living with HIV over time. Fourteen men and 10 women who were HIV positive and over 50 years (mean age: 57 years; range: 50-73) participated in 4 interviews over 20 months. Longitudinal analyses of the transcribed interviews identified 4 phenotypes of episodic disability over time: decreasing, increasing, stable, or significant fluctuations. Although all participants experienced uncertainty, acceptance and optimism were hallmarks of those whose phenotypes were stable or improved over time. Understanding a person’s episodic trajectory may help to tailor interventions to promote stability, mitigate an upward trajectory of increasing disability, and increase the time between episodes of illness.

Use of Living Strategies among Adults Aging with HIV in Canada: Comparison by Age-Group Using Data from the HIV, Health and Rehabilitation Survey:

Objective: To examine the type and frequency of living strategies used by adults living with HIV. Methods: We conducted a cross-sectional web-based survey that included 51 living strategies: maintaining sense of control, attitudes and beliefs, blocking HIV out of the mind, and social interaction. We examined the frequency of use and compared the proportion of respondents who engaged in strategies across 3 age-groups (<40 years, 40-49 years, and ≥50 years). Results: Of the 935 participants, the majority were men (79%) and most (≥60%) engaged “most” or “all of the time” in healthy lifestyle strategies and maintained a positive outlook living with HIV. Compared to younger participants, a higher proportion of older adults (≥50 years) engaged “most” or “all the time” in strategies that involved maintaining control over health and adopting positive attitudes and outlook living with HIV. Conclusions: Findings can help to inform the role of self-management to enhance successful aging with HIV.

Qualitative longitudinal study of episodic disability experiences of older women living with HIV in Ontario, Canada

Objectives To examine the episodic disability experiences of older women living with HIV over time. Design Qualitative longitudinal study, conducting semistructured in-depth interviews on four occasions over a 20-month time frame. Inductive thematic analyses were conducted cross-sectionally and longitudinally. Setting Participants were recruited from HIV community organisations in Canada. Participants 10 women aged 50 years or older living with HIV for more than 6 years. Results Two major themes related to the episodic nature of the women’s disability. Women were living with multiple and complex sources of uncertainty over time including: unpredictable health challenges, worrying about cognition, unreliable weather, fearing stigma and the effects of disclosure, maintaining housing and adequate finances, and fulfilling gendered and family roles. Women describe strategies to deal with uncertainty over time including withdrawing and limiting activities and participation and engaging in meaningful activities. Conclusions This longitudinal study highlighted the disabling effects of HIV over time in which unpredictable fluctuations in illness and health resulted in uncertainty and worrying about the future. Environmental factors, such as stigma and weather, may put older women living with HIV at a greater risk for social isolation. Strategies to promote dealing with uncertainty and building resilience are warranted.

Using the Theoretical Domains Framework to identify barriers and facilitators to exercise among older adults living with HIV

ABSTRACT People with HIV are living longer. However, co-morbidities are often more prevalent and severe than in the general population and have greater impacts on health status. Although compelling evidence exists about the health benefits of exercise in the HIV literature, many people living with HIV tend to be physically inactive. The purpose of this study was to use the Theoretical Domains Framework to investigate the barriers and facilitators to participation in exercise of older people living with HIV. This qualitative study involved in-depth, semi-structured interviews with 12 adults aged 45 years and older recruited from HIV organizations and health centres. Data were analyzed thematically using the Theoretical Domains Framework, and two investigators independently coded transcripts. Six prominent domains were identified from the interviews: Social influences, environmental context and resources, reinforcement, intentions, social and professional role, and knowledge. Themes emerging from the interviews fit into all 14 domains of the Theoretical Domains Framework, and 67% of themes fit into the six most prominent domains. The participants had a working knowledge of exercise and its health benefits but were unfamiliar with specific exercise parameters. The majority identified environmental or resource constraints as salient barriers for participation in exercise programmes. Co-morbidities, injuries, and the side effects of HIV disease and medication were also acknowledged as barriers. Stigma and discrimination from friends, family, people within the LGBTQ community, and health care providers were commonly discussed. Participants spoke of the importance of social support to facilitate participation in exercise programmes. Other facilitators included using technology and incorporating exercise into day-to-day activities. People aging with HIV experience many barriers to exercise. Those designing exercise interventions for people aging with HIV should incorporate strategies to address these obstacles.