Effectiveness of wheelchair skills training for improving manual wheelchair mobility in children and adolescents: protocol for a multicenter randomized waitlist-controlled trial.

BACKGROUND: Self-directed mobility during childhood can influence development, social participation, and independent living later in life. For children who experience challenges with walking, manual wheelchairs (MWCs) provide a means for self-directed mobility. An effective MWC skills training program exists for adults, but controlled trials have not yet been documented in children and adolescents. This paper outlines the protocol for a multi-centre randomized wait-list controlled trial. The primary objective is to test the hypothesis that children and adolescents who receive MWC skills training will have higher MWC skills capacity compared to children and adolescents in the control group who receive usual care. The secondary objectives are to explore the influence of MWC skills training in children and adolescents (MWC use self-efficacy and satisfaction with participation in meaningful activities), and parents (perceived MWC skills); and to measure retention three months later. METHODS: A multi-centre, parallel-group, single-blind randomized wait-list controlled trial will be conducted. A sample of 60 children and adolescents who use MWCs will be recruited in rehabilitation centres, specialized schools, and the communities of three Canadian cities. Participants will be randomized (1:1) to the experimental (Wheelchair Skills Training Program [WSTP]) or wait-list control group (usual care). Performance-based and self-report measures will be completed at baseline (T1), three months (post-intervention, T2), and three months post-intervention (T3). The primary outcome will be MWC skills capacity post-intervention. Secondary outcomes will be MWC use self-efficacy and satisfaction with participation of the child/adolescent, and parent-perceived MWC skills. The WSTP will consist of 12 sessions, 45-60 min each, delivered 1-2 times per week by trained personnel with health professions education. Training will be customized according to the child's baseline skills and participation goals that require the use of the MWC. The wait-list control group will receive usual care for 3 months and then receive the WSTP after completing T2 evaluations. Data will be analysed using ANCOVA (controlling for baseline scores). DISCUSSION: MWC skills training may be one way to improve self-directed mobility and related outcomes for children and adolescents. The results of this multi-centre randomized wait-list controlled trial will allow for the effectiveness of the intervention to be evaluated in a variety of clinical contexts and geographical regions. TRIAL REGISTRATION: ClinicalTrials.gov: NCT05564247, Version October 3, 2022.

The Rare Knowledge Mining Methodological Framework for the Development of Practice Guidelines and Knowledge Translation Tools for Rare Diseases.

Rare diseases bring on a heavy health, social and economic burden that impacts patients' lives and puts pressure on the healthcare system. Furthermore, they are often associated with limited published studies to inform multidisciplinary clinical practice thus limiting evidence-based practice. Moreover, the development of knowledge translation products including clinical care guidelines are often very challenging based on the current available methodological frameworks relying mostly on critical appraisal of the published research evidence where randomized clinical trial design is considered as the gold standard. To overcome this barrier, we proposed the Rare Knowledge Mining Methodological Framework (RKMMF). The RKMMF is one possible answer to improve the development of knowledge translation products for rare diseases. This framework includes other sources of evidence including registry information and qualitative studies and the involvement of expert patients. This article documents the RKMMF structure and its application is exemplified through knowledge translation products developed for a neuromuscular population.

Physical activity for individuals living with a physical disability in Quebec: Issues and opportunities of access.

BACKGROUND: Individuals living with a physical disability have reported difficulty in meeting their healthy living and leisure needs which could be a result of poor accessibility. OBJECTIVE: This qualitative study aimed to understand the relative accessibility of physical activity from the perspective of individuals living with a physical disability in Quebec, Canada. METHODS: Twenty semi-structured interviews were conducted with current, past, non-members, and staff members of an adapted physical activity program. A qualitative approach with an inductive thematic analysis was used to interpret the data. RESULTS: We identified five overarching themes focusing on participants' experiences related to access: (i) physical activity opportunities; (ii) social interactions; (iii) relationships; (iv) infrastructure; (v) policies and public services. Participants highlighted that access to physical activity programming is shaped by a complex interaction of these overarching themes and their sub-themes. CONCLUSIONS: Access to physical activity opportunities for individuals living with a physical disability cannot be understood in isolation from the broader public policies, infrastructure, social interactions, and relationships that shape their experiences. Policy makers and other health and recreational professionals must consider these broader factors when recommending or creating physical activity opportunities for individuals with physical disabilities.

Facilitators and barriers to the use of service dogs: an exploratory study using the Theoretical Domains Framework.

Purpose: Given the scarcity of service dogs to help individuals with mobility impairments in the community, it is crucial to identify facilitators and obstacles to the acquisition and use of service dogs in order to optimize their use and have a positive impact on the lives of individuals with disabilities. The goal of this study was to describe perceived facilitators and barriers influencing the acquisition and use of service dog by owners and rehabilitation providers, including those who had and had not recommended service dogs.Method: We conducted a phenomenological qualitative study involving in-depth interviews with nine service dog owners and 13 rehabilitation professionals in Canada. Our questionnaires were based on the Theoretical Domains Framework and the data were analyzed using a thematic content approach.Results: Knowledge, beliefs about consequences, and environmental context and resources were the domains most frequently mentioned by both dog owners and rehabilitation professionals. While service dog owners placed greater importance on their belief in their capacity to get and use service dogs, rehabilitation professionals focussed more on their role and identity within the process.Conclusion: Improving the knowledge of the availability and process of acquiring service dogs would be important for rehabilitation professions to improve the quality of life and functional capabilities of persons with disabilities.Implications for rehabilitationIdentifying determinants of service dog acquisition and use can support proposed strategies to optimize the use of this assistive technology;Determinants of service dog acquisition and use are are different for dog owners and rehabilitation professionals, which suggest the need of tailored knowledge translation strategies;Knowledge, beliefs about consequences, and environmental context and resources were the categories of determinants perceived as being more influential on the process.