Patient perspectives on primary care for multimorbidity: An integrative review.

INTRODUCTION: Improving healthcare for people with multiple chronic or ongoing conditions is receiving increased attention, particularly due to the growing number of people experiencing multimorbidity (MM) and concerns about the sustainability of the healthcare system. Primary care has been promoted as an important resource for supporting people with MM to live well with their conditions and to prevent unnecessary use of health care services. However, traditional primary care has been criticized for not centring the needs and preferences of people with MM themselves. Our aim was to conduct a review that centred on the perspective of people with MM in multiple ways, including having patient partners co-lead the design, conduct and reporting of findings, and focusing on literature that reported the perspective of people with MM, irrespective of it being experimental or nonexperimental. METHODS: We searched for published literature in CINAHL with Full Text (EBSCOhost) and MEDLINE All (Ovid). Findings from experimental and nonexperimental studies were integrated into collaboration with patient partners. RESULTS: Twenty-nine articles were included in the review. Findings are described in five categories: (1) Care that is tailored to my unique situation; (2) meaningful inclusion in the team; (3) a healthcare team that is ready and able to address my complex needs; (4) supportive relationships and (5) access when and where I need it. CONCLUSION: This review supports a reorientation of primary care systems to better reflect the experiences and perspectives of people with MM. This can be accomplished by involving patient partners in the design and evaluation of primary care services and incentivizing collaboration among health and social supports and services for people with MM. PATIENT OR PUBLIC CONTRIBUTION: Patient partners were involved in the design and conduct of this review, and in the preparation of the manuscript. Their involvement is further elucidated in the manuscript text.

Examining the Utility of the HIV Disability Questionnaire (HDQ) in Clinical Practice: Perspectives of People Living with HIV and Healthcare Providers.

Our aim was to examine the utility of the HIV Disability Questionnaire (HDQ), a patient-reported outcome measure for use in clinical practice from the perspectives of people living with HIV (PLWH) and healthcare providers. We conducted a qualitative descriptive study. Fifteen PLWH and five healthcare providers participated in an interview, of which ten PLWH participated in a follow-up focus group discussion. The HDQ has value in clinical practice, including its role in assessing disability, facilitating communication, tailoring treatments, and guiding referrals. Strengths of the HDQ included its comprehensiveness, relevance of domains, and importance of specific items. Concerns related to length of the HDQ, the potential for some items to trigger emotional response, and negative connotations with the term 'disability.' Recommendations for HDQ implementation included the importance of score interpretability, shortening the questionnaire, and tailoring administration to the individual. Results suggest the HDQ possesses clinical utility with PLWH and healthcare providers.

Strengths and Challenges of Implementing Physiotherapy in an HIV Community-Based Care Setting: A Qualitative Study of Perspectives of People Living with HIV and Healthcare Providers.

The needs of people living with HIV (PLWH) who have access to antiretroviral therapy have shifted from hospital to community care; however, little is known about physiotherapy within HIV community-based care. Our aim was to understand strengths and challenges of implementing physiotherapy within an interprofessional HIV day health program in Toronto, Ontario, Canada. We conducted a qualitative descriptive study using semi-structured interviews. Data were analyzed using inductive content analysis. Fifteen PLWH and 5 healthcare providers participated. Strengths included improved access to physiotherapy and fulfilling an unmet need for rehabilitation; a tailored approach to physiotherapy; co-location improved communication, coordination, and engagement in care; and improved health outcomes for PLWH (i.e. function, psychosocial outcomes, and quality of life). Challenges related to managing expectations; variable attendance at visits; and managing complex and diverse needs of PLWH. Results may be transferable to other community-based care settings that provide care for PLWH and complex multi-morbidity.

Research priorities for rehabilitation and aging with HIV: a framework from the Canada-International HIV and Rehabilitation Research Collaborative (CIHRRC).

BACKGROUND: People living with HIV are living longer, and can experience physical, mental and social health challenges associated with aging and multimorbidity. Rehabilitation is well positioned to address disability and maximize healthy aging. An international collaborative network, called the Canada-International HIV and Rehabilitation Research Collaborative (CIHRRC), works to guide this emerging field. In this article, we report findings from CIHRRC's aim to identify emerging research priorities in HIV, aging and rehabilitation from the perspectives of people living with HIV, clinicians, researchers, representatives from community organizations and policy stakeholders. METHODS: We conducted a multi-stakeholder multi-method international consultation with people living with HIV, researchers, clinicians and representatives of community-based organizations to identify research priorities in HIV, aging and rehabilitation. Stakeholders identified research priorities during a one-day International Forum comprised of presentations and facilitated discussion. We collated and analyzed data using content analytical techniques, resulting in a framework of research priorities. RESULTS: Sixty-nine stakeholders from countries including Canada (n = 62; 90%), the United Kingdom (n = 5; 7%), United States (n = 1; 1%) and Australia (n = 1; 1%) attended the International Forum on HIV, Aging and Rehabilitation Research. Stakeholders represented community-based organizations (n = 20; 29%), academic institutions (n = 18; 26%), community or institutional healthcare organizations (n = 11; 16%), research or knowledge production organizations (n = 10; 14%), and organizations representing government or industry (n = 10; 14%). The Framework of Research Priorities in HIV, Aging and Rehabilitation includes seven research priorities: (1) nature, extent and impact of disability, concurrent health conditions and chronic inflammation with HIV; (2) prevalence, severity and impact of frailty; (3) community and social participation aging with HIV; (4) strategies for chronic disease management and healthy aging with HIV; (5) facilitators and barriers to access and engagement in, rehabilitation; (6) effectiveness of rehabilitation interventions for healthy aging with HIV; and (7) advancing development and use of patient reported outcome measures in HIV and aging. The Framework highlights methodological considerations to approach the priorities and the importance of knowledge translation and exchange to apply research knowledge into practice, programs and policy. CONCLUSIONS: These priorities offer a foundation for collaboration among international and multidisciplinary teams to advance the field of HIV, aging and rehabilitation in order to promote healthy aging with HIV.

Evaluation of a Community-Based Self-Management Program to Increase Access to Rehabilitation for People Living with HIV.

We qualitatively evaluated a novel educational program to help people living with HIV understand the role of rehabilitation, facilitate access to rehabilitation, and promote self-management of chronic disease in Canada. The program incorporated components of self-efficacy, client-centered care, peer education, and problem-based learning. Delivery of the community-engaged program was viewed as feasible and acceptable; however, a flexible delivery model was deemed important. Perceived learning was related to rehabilitation, advocacy, and taking responsibility for one's health. A co-leader model and access to online resources were strengths. Future work should assess the ability to apply advocacy knowledge and skills to access rehabilitation services.

Characterizing the disability experience among adults living with HIV: a structural equation model using the HIV disability questionnaire (HDQ) within the HIV, health and rehabilitation survey.

BACKGROUND: People aging with HIV can experience a variety of health challenges associated with HIV and multimorbidity, referred to as 'disability'. Our aim was to characterize the disability experience and examine relationships between dimensions of disability among adults living with HIV. METHODS: We performed a structural equation modeling analysis with data from the Canadian web-based HIV, Health and Rehabilitation Survey. We measured disability using the HIV Disability Questionnaire (HDQ), a patient-reported outcome (69 items) that measures presence, severity and episodic features of disability across six domains: 1) physical symptoms, 2) cognitive symptoms, 3) mental-emotional health symptoms, 4) difficulties carrying out day-to-day activities, 5) uncertainty and worrying about the future, and 6) challenges to social inclusion. We used HDQ severity domain scores to represent disability dimensions and developed a structural model to assess relationships between disability dimensions using path analysis. We determined overall model fit with a Root Mean Square Error of Approximation (RMSEA) of < 0.05. We classified path coefficients of ≥ 0.2-0.5 as a medium (moderate) effect and > 0.5 a large (strong) effect. We used Mplus software for the analysis. RESULTS: Of the 941 respondents, most (79%) were men, taking combination antiretroviral medications (90%) and living with two or more simultaneous health conditions (72%). Highest HDQ presence and severity scores were in the uncertainty domain. The measurement model had good overall fit (RMSEA= 0.04). Results from the structural model identified physical symptoms as a strong direct predictor of having difficulties carrying out day-to-day activities (standardized path coefficient: 0.54; p < 0.001) and moderate predictor of having mental-emotional health symptoms (0.24; p < 0.001) and uncertainty (0.36; p < 0.001). Uncertainty was a strong direct predictor of having mental-emotional health symptoms (0.53; p < 0.001) and moderate direct predictor of having challenges to social inclusion (0.38; p < 0.001). The relationship from physical and cognitive symptoms to challenges to social inclusion was mediated by uncertainty, mental-emotional health symptoms, and difficulties carrying out day-to-day activities (total indirect effect from physical: 0.22; from cognitive: 0.18; p < 0.001). CONCLUSIONS: Uncertainty is a principal dimension of disability experienced by adults with HIV. Findings provide a foundation for clinicians and researchers to conceptualize disability and identifying areas to target interventions.

Healthy aging with HIV: The role of self-management support.

People living with HIV on antiretroviral treatment have significantly improved longevity, but as a result may also face increasing multimorbidity due to aging and long-term medication use. Thus, care needs for this population have evolved to require a chronic disease management approach in which self-management plays a central role. Here we highlight the importance of expanding self-management support options for people living with HIV, and discuss strategies for implementing and evaluating self-management interventions, outlining potential opportunities, challenges and solutions. We contend that standardized programs such as those offered through the Self-Management Resource Centre provide a rich opportunity to build the evidence base regarding the potential effectiveness of self-management support among people living with HIV. Thus we recommend enhancing self-management support through meaningful community-level collaboration with people with lived experience, careful assessment of process and outcome factors including who does not participate and why, attention to stigma and the specific needs of HIV priority groups, and consideration of how to extend engagement with services to address social and material needs beyond self-management program participation. We hope this reflection will serve as an aide for researchers and program managers to improve the array of evidence-based self-management support options available to people living with HIV.

Design features of a guideline implementation tool designed to increase awareness of a clinical practice guide to HIV rehabilitation: A qualitative process evaluation.

RATIONALE, AIMS, AND OBJECTIVES: A comprehensive electronic guide (e-module) describing an interprofessional, evidence-informed approach to HIV rehabilitation was developed as an education resource for rehabilitation professionals. We developed a guideline implementation tool, consisting of a 10-week, case-based education intervention delivered by email, that was perceived to increase rehabilitation professionals' (occupational therapists (OTs), physical therapists (PTs), and speech language pathologists (SLPs)) knowledge and confidence to apply best practices in HIV rehabilitation. This study aimed to increase understanding of how the design of the guideline implementation tool facilitated increased awareness of and access to the e-module among rehabilitation professionals. METHODS: We conducted a single group intervention study with rehabilitation professionals in Canada and the United Kingdom. Six case studies targeting HIV pathophysiology and associated conditions, an interprofessional approach to rehabilitation assessment and treatment, and psychosocial issues experienced by people living with HIV, were emailed to participants at 2-week intervals. Individual semi-structured interviews were conducted post-intervention. Interview transcripts were analysed using a descriptive qualitative approach. RESULTS: Twenty-six individuals (17 from Canada, and 9 from the UK; 16 PTs, 7 OTs, 3 SLPs) were interviewed. One main theme related to design features of the intervention that facilitated learning and access to the e-module emerged. Subthemes highlighted features of the case-based intervention, including technical feasibility, terminology, formatting and layout, hyperlinks, number and frequency of case studies, and diverse and realistic case scenarios relevant to the learner's practice, that participants described as facilitating access to information and learning. CONCLUSION: Electronically administered case studies were perceived as complementary knowledge tools that increased access to an evidence-informed guide to HIV rehabilitation. Findings provide guidance on using case studies as a guideline implementation tool to facilitate access to information and related resources to optimize learning.

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

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.

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.

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.

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

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.

'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.

Evolution of an International Research Collaborative in HIV and Rehabilitation: Community Engaged Process, Lessons Learned, and Recommendations.

BACKGROUND: Human immunodeficiency virus (HIV) is increasingly considered a chronic illness. Rehabilitation can address some of the health challenges of people living with HIV (PLWHIV); however, the field is emerging. OBJECTIVES: We describe our experience establishing an international collaborative in HIV and rehabilitation research using a community engaged approach. METHODS: The Canada-UK (now Canada-International) HIV and Rehabilitation Research Collaborative (CIHRRC) is a network of more than 85 PLWHIV, researchers, clinicians, and representatives from community-based organizations collectively working to advance knowledge on HIV and rehabilitation. RESULTS: Activities and outcomes include facilitating knowledge transfer and exchange (KTE), establishing and strengthening multistakeholder partnerships, and identifying new and emerging priorities in the field. Collaboration and support from community organizations fostered mechanisms to raise the profile of, and evidence for, rehabilitation in the context of HIV. Considerations of scope, partnership, and sustainability are important. We offer recommendations for developing an international community-academic-clinical research collaborative using a community-engaged approach. CONCLUSIONS: Research networks involving community-academic-clinical partnerships can help to promote KTE and establish a coordinated response for addressing priorities in an emerging field.

Advancing scoping study methodology: a web-based survey and consultation of perceptions on terminology, definition and methodological steps.

BACKGROUND: Scoping studies (or reviews) are a method used to comprehensively map evidence across a range of study designs in an area, with the aim of informing future research practice, programs and policy. However, no universal agreement exists on terminology, definition or methodological steps. Our aim was to understand the experiences of, and considerations for conducting scoping studies from the perspective of academic and community partners. Primary objectives were to 1) describe experiences conducting scoping studies including strengths and challenges; and 2) describe perspectives on terminology, definition, and methodological steps. METHODS: We conducted a cross-sectional web-based survey with clinicians, educators, researchers, knowledge users, representatives from community-based organizations, graduate students, and policy stakeholders with experience and/or interest in conducting scoping studies to gain an understanding of experiences and perspectives on the conduct and reporting of scoping studies. We administered an electronic self-reported questionnaire comprised of 22 items related to experiences with scoping studies, strengths and challenges, opinions on terminology, and methodological steps. We analyzed questionnaire data using descriptive statistics and content analytical techniques. Survey results were discussed during a multi-stakeholder consultation to identify key considerations in the conduct and reporting of scoping studies. RESULTS: Of the 83 invitations, 54 individuals (65 %) completed the scoping questionnaire, and 48 (58 %) attended the scoping study meeting from Canada, the United Kingdom and United States. Many scoping study strengths were dually identified as challenges including breadth of scope, and iterative process. No consensus on terminology emerged, however key defining features that comprised a working definition of scoping studies included the exploratory mapping of literature in a field; iterative process, inclusion of grey literature; no quality assessment of included studies, and an optional consultation phase. We offer considerations for the conduct and reporting of scoping studies for researchers, clinicians and knowledge users engaging in this methodology. CONCLUSIONS: Lack of consensus on scoping terminology, definition and methodological steps persists. Reasons for this may be attributed to diversity of disciplines adopting this methodology for differing purposes. Further work is needed to establish guidelines on the reporting and methodological quality assessment of scoping studies.

Community Involvement in Development of Evidence-Informed Recommendations for Rehabilitation for Older Adults Living With HIV.

BACKGROUND: Involving community in development of clinical practice guidelines (CPGs) can decrease the gap between patient preferences and research evidence. OBJECTIVE: To incorporate meaningful participation of people living with human immunodeficiency virus (HIV; people living with HIV [PHAs]) in the development of evidence informed recommendations for rehabilitation practice. METHODS: PHAs were involved in a process to develop practice recommendations internally as members of a project team and externally through formal endorsement of the recommendations. LESSONS LEARNED: Lessons learned include 1) providing time to develop as a team and understand the roles, biases, and expertise of each member, 2) engaging community in initial discussions to determine the most meaningful involvement, 3) realizing that participation in research may trigger anxiety and stress in community members, 4) developing terms of reference to clarify roles and expectations, 5) providing opportunities for skill development, and 6) conducting formal evaluation of the process and satisfaction of community. CONCLUSION: Meaningful inclusion of community can improve the quality of practice guidelines.

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.

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.