Search

Background: Many community-based HIV research studies incorporate principles of greater involvement and meaningful engagement of people living with HIV (GIPA/MEPA) by training people with HIV as peer researchers. Unfortunately, there are still some aspects of research (e.g., quantitative data analysis and interpretation) where many projects fall short in realizing GIPA/MEPA principles. To address these gaps, we developed an eight-week training course that aimed to build the capacity of peer researchers around the understanding and interpretation of quantitative data and incorporating lived experience to increase the impact of the knowledge transfer and exchange phase of a study. Methods: Peer researchers (n = 8) participated from British Columbia, Alberta, and Ontario and lessons learned from the training were implemented throughout the dissemination of research findings from the People Living with HIV Stigma Index study. This paper presents the curriculum and main training components, course evaluation results, and challenges and lessons learned. The manuscript was created in collaboration with and includes the perspectives of both the peer researchers involved in the training, as well the course facilitators. Results: Throughout the course, peer researchers' self-assessed knowledge and understanding of quantitative research and data storytelling improved and, through interactive activities and practice, they gained the confidence to deliver a full research presentation. This improved their understanding of research findings, which was beneficial for discussing results with community partners and study participants. The peer researchers also agreed that learning about integrating lived experience with quantitative data has helped them to make research findings more relatable and convey key messages in a more meaningful way. Conclusions: Our training curriculum provides a template for research teams to build capacity in areas of research where peer researchers and community members are less often engaged. In doing so, we continue to uphold the principles of GIPA/MEPA and enhance the translation of research knowledge in communities most greatly affected. Plain English Summary: Engaging patient groups or community members is commonplace in HIV research where people living with HIV are trained as peer researchers. There are still however some gaps where community members are less engaged, especially in quantitative data analysis. This presents a barrier preventing them from being meaningfully engaged in research about them. To build capacity in these areas, we designed an eight-week online course that taught peer researchers about quantitative data analysis and interpretation with a focus on concepts that would be important for talking about key messages from research findings. This was used to enhance the knowledge translation and dissemination initiatives for the People Living with HIV Stigma Index study—a survey tool containing quantitative measures examining stigma and related health factors. Peer researchers agreed that their knowledge and understanding of the key quantitative data concepts improved significantly throughout the course. This increased understanding helped them discuss quantitative data with community members and study participants, which was important to ensure that research findings reach the affected communities. Peer researchers also agreed that incorporating their new data analysis knowledge with existing lived experience helped them to make findings more relatable and understandable which is critical for translating knowledge to other researchers and policy makers. Overall, our training curriculum gave peer researchers the confidence to talk about quantitative data and improve their capacity to disseminate research. This work also provides guidelines for training peer researchers and ensuring that they are meaningfully engaged in research studies they are a part of. [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM AUTHOR]

Background: Long-term use of antiretroviral therapy, normal aging, and presence of certain risk factors are associated with metabolic disorders that predispose persons living with HIV to diabetes and cardiovascular diseases. The emergence and progression of these disorders can be prevented by adopting healthy behaviours. Based on the theory of planned behaviour, the Web-based tailored intervention TAVIE en santé was developed. The aim of this study is to evaluate the effectiveness of TAVIE en santé in order to support people living with HIV in the adoption of health promoting behaviours.Methods/design: An online randomized controlled trial with parallel-groups will be conducted across Canada. To participate in this study, people living with HIV must be: ≥ 18 years, able to read/understand French or English, have access to the Internet. A convenience sample of 750 participants will be randomly assigned either to an experimental group (TAVIE en santé, n = 375) or to a control group (websites, n = 375) (1:1 allocation ratio). The TAVIE en santé intervention is composed of seven interactive computer sessions, lasting between 5 and 10 min. The sessions, hosted by a virtual nurse, aim to develop and strengthen skills required for behaviour change. The control group will receive a validated list of five predetermined conventional health-related Websites. The adoption of health behaviour (smoking cessation or physical activity or healthy eating) is the principal outcome. Cognitions (intention, attitude, perceived behavioral control) are the secondary outcomes. Health indicators will also be assessed. All outcomes will be measured with a self-administered online questionnaire and collected three times: at baseline, 3 and 6 months after. The principal analyses will focus on differences between the two trial groups using Intention-to-Treat analysis.Discussion: This study will yield new results about the efficacy of Web-based tailored health behaviours change interventions in the context of chronic disease. The TAVIE en santé intervention could constitute an accessible complementary service in support of existing specialized services to support people living with HIV adopt health behaviors.Trial Registration: NCT02378766 , assigned on March 3th 2015. [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM AUTHOR]

The purpose of this community-based research was to examine the experiences of Canadian Aboriginal youth regarding accessing HIV testing and care services. We used a mixed method exploratory research design; 413 participants completed a self-administered survey and 25 youth participated in in-depth semistructured interviews. Findings reported here are from the 26 survey participants (12.4%) and nine interview participants (28.9%) who self-reported being positive for HIV. Results of this study suggest that some Aboriginal youth do not test for HIV until late in the course of their disease, and once diagnosed, a significant number of youth delay accessing care. Support from friends, family, and others is an important motivator for youth to initiate care and treatment. Integrated, comprehensive, youth-friendly, and culturally safe services are important to keep youth in care. [ABSTRACT FROM PUBLISHER]

Aims: This article describes a pilot programme aiming to identify the strengths and challenges associated with a human immunodeficiency virus (HIV) mentorship programme for rehabilitation professionals. Methods: This unique pilot programme incorporated elements of problem-based learning, interprofessionalism and multiple mentoring models. A group of five physiotherapy mentees met initially with three clinician mentors, and three mentors who were persons living with HIV, for a one day workshop to develop relationships, identify learning needs and engage in learning through discussion of case scenarios. Subsequently they met formally every month via teleconference, over a five-month period, followed by a final one-day workshop. Qualitative evaluation included interviews and focus group methodology. Transcripts from these were analyzed through qualitative content analyses. Findings: Participants viewed the mentorship programme positively, in particular the networks they were able to establish, and learning from the mentors living with HIV. However, barriers to participation were related to scheduling and lack of support to devote time to the programme from the mentees' clinical managers. Other challenges related to the mentees' limited opportunities to implement new knowledge, and to difficulties in engaging in informal mentorship activities. Conclusions: Lessons learned from this pilot programme are of value to those interested in developing HIV-related mentorship experiences for rehabilitation health professionals or for those in other emerging areas of practice. [ABSTRACT FROM AUTHOR]

Thematic analysis of transcripts from interviews with a purposive sample of 39 voluntary human immunodeficiency virus (HIV) test recipients in Ontario (selected on the basis of HIV serostatus, risk behaviors, region of residence, gender, and testing format) was used to identify elements of HIV testing services of concern to test recipients. Colleague review was used to ensure dependability of findings, and emergent themes were compared with the existing literature on patient satisfaction. Data analysis identified a comprehensive set of 28 service elements, including components related to access and availability (convenience, physical accessibility, familiarity), structure of the service (privacy, and characteristics of the venue, session, and test provider), technical and medical aspects of the testing process (including blood-taking, file maintenance, obtaining informed consent, waiting period, and manner of result provision), and both cognitive and socioemotional aspects of the interpersonal process (including decision-making support, personalized risk information, receipt of appropriate emotional support, and service referrals). Results suggest that information on, and training in, counseling skills for both physician and nonphysician test counselors is important in the provision of quality testing services. Results also suggest that test recipients would appreciate choice in testing service options, and within the test session, individualized information, and counseling. [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM AUTHOR]