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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.

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.

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.

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.

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.

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.

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.

Reflexivität umfasst das Vermögen, die eigene soziale Positionierung und Erfahrungen von erlebten Bevorzugungen und Benachteiligungen zu rekonstruieren, die unserer Selbst- und Weltverstehen rahmen. Im Falle klinischer Entscheidungen ist dies besonders bedeutungsvoll, da hiervon mögliche Verbesserungen von Dienstleistungen und ein vermehrter Nutzen für die Patient/innen abhängen. In diesem Beitrag befassen wir uns mit der Lehre reflexiver Strategien in der Ausbildung klinischer und gesundheitswissenschaftlicher Student/innen. Hierzu haben wir reguläre Veröffentlichungen und graue Literatur geprüft, um eine Antwort auf die Frage geben zu können, welche Strategien in Trainingsprogrammen für diese Studierendengruppen benannt und genutzt werden. Schlagworte für die Abfrage verschiedener Datenbanken waren u.a. Reflexivität, reflexiv, Gesundheitswissenschaft; Pädagogik, Lernen und Ausbildung. Jedes Abstract wurde von jeweils zwei Team-Mitgliedern unabhängig voneinander bewertet. Insgesamt wurden dann 68 Texte entlang unserer Auswahlkriterien in die Scoping-Studie aufgenommen. Wir fanden sehr viele unterschiedliche Ansätze, wobei Gemeinsamkeiten insbesondere reflexives Schreiben, die Bezugnahme auf erfahrungsbasiertes Lernen, das fortgesetzte Lernen in Gruppen und die Nutzung von Online-Lern-Umgebungen betrafen. Im Text werden auch die 19 Texte kurz skizziert, die sich explizit mit der Evaluation der Verbesserung reflexiver Strategien in der Lehre befassen. Wir kommen zu dem Schluss, dass für eine sozial-gerechtere Gesundheitspraxis dringend weitere Forschung erforderlich ist.URN: http://nbn-resolving.de/urn:nbn:de:0114-fqs1603140

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. 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. 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. 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. 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.

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.