HIV in MOTION: a community of practice on physical rehabilitation for and by people living with HIV and their allies

BackgroundThis paper describes the design, implementation, and evaluation of a community of practice (CoP), HIV in MOTION (HIM), to advance physical activity rehabilitation interventions with adults living with HIV, clinicians, researchers, and representatives from community-based organizations. We attracted a diverse audience of geographically dispersed people living with HIV, clinicians, exercise personnel, and trainees to eight HIM community of practice events that featured the clinical, research, and lived experience of people living with HIV. HIV in MOTION had (a) a domain related to physical rehabilitation, exercise, and social participation for people living with HIV; (b) a community of diverse individuals; and (c) a practice, that is, a series of sustained interactions online and offline, synchronous, and asynchronous. Our team included six diverse people living with HIV, two coordinators, and three academic researchers who planned, prepared, implemented, and evaluated each online session. To evaluate the HIV in MOTION CoP, we employed an evaluation framework composed of five criteria: Goals and Scope, Context and Structure, Process and Activities, Outcomes, and Impact. We collected quantitative and qualitative evaluative data using online evaluation, audiovisual archiving, and participant observations during the debriefing with all members of our team.ResultsWe widened the Goals and Scope of the HIV in MOTION CoP to include the HIV narrative of lived experiences, including autopathography, and participant storytelling. In matters of Context and Structure, we received explicit satisfaction with our governance and leadership. Also, being flexible to fit online formats was a productive strategy that made the HIV in MOTION CoP sessions agile and amenable to audiovisual archiving. Our indicators of success in Process, Activities, and Outcomes included participant retention online, elicited verbal interventions and comments in the chat room, and a rate of three repeat visits online. The indicators of success of Impact were the presence of voluntary and unscripted autopathography, the patient storytelling and how it reportedly caused changes in the participants, and the “legitimate peripheral participation” of emerging research and clinical students. In conclusion, we recommend our form of CoP for mixing the knowledge of diverse persons in this area. However, we recommend considering budget and burnout as serious challenges to sustainability

Older People’s Needs and Opportunities for Assistive Technologies

Older adults experience a disconnect between their needs and adoption of technologies that have potential to assist and to support more independent living. This paper reviewed research that links people’s needs with opportunities for assistive technologies. It searched 13 databases identifying 923 papers with 34 papers finally included for detailed analysis. The research papers identified needs in the fields of health, leisure, living, safety, communication, family relationship and social involvement. Amongst these, support for activities of daily living category was of most interest. In specific sub-categories, the next most reported need was assistive technology to support walking and mobility followed by smart cooking/kitchen technology and assistive technology for social contacts with family member/other people. The research aimed to inform a program of research into improving the adoption of technologies where they can ameliorate identified needs of older people

Exploring Technology, Design and Dementia: Design approaches, considerations, and implications for an emerging field

The majority of people with dementia live at home. Consequently, they are, to varying degrees, users of home technologies. Yet we know very little about the design of these technologies for this population, including suitable design resources and approaches, analytical tools, and other key considerations. To gain a panoramic view of this topic, three perspectives were explored: developers, people with dementia (PwD), and their caregiving significant others (SO). The first group has never been studied; and the second, in this context, only more recently. In Study I, developers were surveyed on topics ranging from design resources to technology values. Developers could name no resources dedicated to technology design for people with dementia; and technical specialists were aware of few design frameworks to support their work. Values emphasised cost, learnability, self-confidence, and usability. Emotional variability was also cited as an important consideration as was empathy. In Study II, PwD stressed usability and learnability as important technology values. Participants also discussed their emotional responses connected to technology use, particularly their frustrations. In demonstrations of phones, almost all users experienced difficulties placing a call. In Study III, SOs valued usability, learnability and self-confidence most; and highlighted user diversity, familiarity, and emotional factors as other key considerations. Over the course of the project, design factors were identified and design implications, inferred. Some implications referred to human factors and others to systems design considerations. Furthermore, a systems analysis of PwD using phones was conducted to address the question of how to analyse a home technology system in this field. Other key findings include the diversity of PwD (e.g. age, comorbidities); the importance of emotion; and the value that users place on learnable, usable designs. Finally, empathy emerged as an important design approach, both as a way to address diversity and to access usersâ emotional lives.Ph.D

Image1_HIV in MOTION: a community of practice on physical rehabilitation for and by people living with HIV and their allies.pdf

BackgroundThis paper describes the design, implementation, and evaluation of a community of practice (CoP), HIV in MOTION (HIM), to advance physical activity rehabilitation interventions with adults living with HIV, clinicians, researchers, and representatives from community-based organizations. We attracted a diverse audience of geographically dispersed people living with HIV, clinicians, exercise personnel, and trainees to eight HIM community of practice events that featured the clinical, research, and lived experience of people living with HIV. HIV in MOTION had (a) a domain related to physical rehabilitation, exercise, and social participation for people living with HIV; (b) a community of diverse individuals; and (c) a practice, that is, a series of sustained interactions online and offline, synchronous, and asynchronous. Our team included six diverse people living with HIV, two coordinators, and three academic researchers who planned, prepared, implemented, and evaluated each online session. To evaluate the HIV in MOTION CoP, we employed an evaluation framework composed of five criteria: Goals and Scope, Context and Structure, Process and Activities, Outcomes, and Impact. We collected quantitative and qualitative evaluative data using online evaluation, audiovisual archiving, and participant observations during the debriefing with all members of our team.ResultsWe widened the Goals and Scope of the HIV in MOTION CoP to include the HIV narrative of lived experiences, including autopathography, and participant storytelling. In matters of Context and Structure, we received explicit satisfaction with our governance and leadership. Also, being flexible to fit online formats was a productive strategy that made the HIV in MOTION CoP sessions agile and amenable to audiovisual archiving. Our indicators of success in Process, Activities, and Outcomes included participant retention online, elicited verbal interventions and comments in the chat room, and a rate of three repeat visits online. The indicators of success of Impact were the presence of voluntary and unscripted autopathography, the patient storytelling and how it reportedly caused changes in the participants, and the “legitimate peripheral participation” of emerging research and clinical students. In conclusion, we recommend our form of CoP for mixing the knowledge of diverse persons in this area. However, we recommend considering budget and burnout as serious challenges to sustainability.</p

Piloting an online telecoaching community-based exercise intervention with adults living with HIV: protocol for a mixed-methods implementation science study

Introduction Our aim is to evaluate the implementation of an online telecoaching community-based exercise (CBE) intervention with the goal of reducing disability and enhancing physical activity and health among adults living with HIV.Methods and analysis We will conduct a prospective longitudinal mixed-methods two-phased intervention study to pilot the implementation of an online CBE intervention with ~30 adults (≥18 years) living with HIV who consider themselves safe to participate in exercise. In the intervention phase (0–6 months), participants will take part in an online CBE intervention involving thrice weekly exercise (aerobic, resistance, balance and flexibility), with supervised biweekly personal training sessions with a fitness instructor, YMCA membership providing access to online exercise classes, wireless physical activity monitor to track physical activity and monthly online educational sessions on topics related to HIV, physical activity and health. In the follow-up phase (6–12 months), participants will be encouraged to continue independent exercise thrice weekly. Quantitative assessment: Bimonthly, we will assess cardiopulmonary fitness, strength, weight, body composition and flexibility, followed by administering self-reported questionnaires to assess disability, contextual factor outcomes (mastery, engagement in care, stigma, social support), implementation factors (cost, feasibility, technology), health status and self-reported physical activity. We will conduct a segmented regression analyses to describe the change in level and trend between the intervention and follow-up phases. Qualitative assessment: We will conduct online interviews with a subsample of ~10 participants and 5 CBE stakeholders at baseline (month 0), postintervention (month 6) and end of follow-up (month 12) to explore experiences, impact and implementation factors for online CBE. Interviews will be audiorecorded and analysed using content analytical techniques.Ethics and dissemination Protocol approved by the University of Toronto Research Ethics Board (Protocol # 40410). Knowledge translation will occur in the form of presentations and publications in open-access peer-reviewed journals.Trial registration number NCT05006391