cometadata/datacite-titles-descriptions-related-identifiers huggingface dataset:
DOI: 10.6084/m9.figshare.27323380
title: Optimal child-led goal setting practices for school-aged children with a disability or delay: an international Delphi consensus study

description: To achieve expert consensus on optimal child-led goal setting and evaluation practices for school-aged children (5 ≤ 17 years) who have a disability or delay. A three-round, eDelphi consensus design was used. In Round 1, expert allied health professionals identified factors important during child-led goal setting for: (i) planning, (ii) process steps and tools, and (iii) support strategies. Factors were collated into items for Rounds 2 and 3. Participants rated item agreement on a 7-point Likert scale. Consensus was determined as ≥75% of participants in agreement or disagreement. Sixty professionals from nine countries and six disciplines participated. Of 323 unique items generated, 159 (50%) reached consensus. Strong agreement was reached for goal setting and evaluation “process steps” and “support strategies” to engage children. It was strongly recommended that allied health professionals should tailor their processes to each child’s individual needs, provide ability-specific strategies and resources, and empower children to share their perspectives. Fewer items reached consensus for “planning” and “tools” to guide child-led goal setting. Professional experts agree that children can be actively involved in goal setting and evaluation. Future research should focus on tools and technologies to support child-led goal setting for children with diverse abilities. Professionals agree that children should be involved in goal setting to the greatest extent possible.Children’s readiness to participate relates to their cognition, communication, social-emotional skills, and motivation.The goal setting process should be personalised and accessible for children.Child-specific tools are needed to support children to share their perspectives. Professionals agree that children should be involved in goal setting to the greatest extent possible. Children’s readiness to participate relates to their cognition, communication, social-emotional skills, and motivation. The goal setting process should be personalised and accessible for children. Child-specific tools are needed to support children to share their perspectives.
DOI: 10.6084/m9.figshare.27323380.v1
title: Optimal child-led goal setting practices for school-aged children with a disability or delay: an international Delphi consensus study

description: To achieve expert consensus on optimal child-led goal setting and evaluation practices for school-aged children (5 ≤ 17 years) who have a disability or delay. A three-round, eDelphi consensus design was used. In Round 1, expert allied health professionals identified factors important during child-led goal setting for: (i) planning, (ii) process steps and tools, and (iii) support strategies. Factors were collated into items for Rounds 2 and 3. Participants rated item agreement on a 7-point Likert scale. Consensus was determined as ≥75% of participants in agreement or disagreement. Sixty professionals from nine countries and six disciplines participated. Of 323 unique items generated, 159 (50%) reached consensus. Strong agreement was reached for goal setting and evaluation “process steps” and “support strategies” to engage children. It was strongly recommended that allied health professionals should tailor their processes to each child’s individual needs, provide ability-specific strategies and resources, and empower children to share their perspectives. Fewer items reached consensus for “planning” and “tools” to guide child-led goal setting. Professional experts agree that children can be actively involved in goal setting and evaluation. Future research should focus on tools and technologies to support child-led goal setting for children with diverse abilities. Professionals agree that children should be involved in goal setting to the greatest extent possible.Children’s readiness to participate relates to their cognition, communication, social-emotional skills, and motivation.The goal setting process should be personalised and accessible for children.Child-specific tools are needed to support children to share their perspectives. Professionals agree that children should be involved in goal setting to the greatest extent possible. Children’s readiness to participate relates to their cognition, communication, social-emotional skills, and motivation. The goal setting process should be personalised and accessible for children. Child-specific tools are needed to support children to share their perspectives.
DOI: 10.6084/m9.figshare.28564420
title: Community participation in adults with Down syndrome: a scoping review

description: Community participation is important for social inclusion and is a focus of government policies that aim to enhance the lives of people with disability, including those with Down syndrome. This scoping review aimed to synthesise research on community participation in adults with Down syndrome. A comprehensive search was completed in Medline, EMBASE, PsycINFO and CINAHL databases. The PRISMA-ScR guidelines informed reporting, and the evidence was synthesised using the International Classification of Functioning, Disability and Health, and the Family of Participation Constructs frameworks. Twenty-six articles with 12,461 participants met the inclusion criteria. Our results indicate: i) many studies did not conceptualise or investigate community participation as a distinct concept; ii) although adults with Down syndrome engaged in a diverse range of activities, particularly related to recreation and leisure, participation was restricted for a large proportion of adults; and iii) personal contextual factors that influenced community participation were age and adaptive function; and environmental factors included parental involvement, social and logistical supports, and place of residence. This new knowledge contributes to our understanding of community participation of adults with Down syndrome by identifying areas where future research or interventions could be made to improve their health and wellbeing. Community participation for adults with Down syndrome occurred relatively infrequently and was restricted for manyCommunity participation could be improved by modifying contextual factors such as optimising social and logistical supportsIt is important to facilitate community participation for people with Down syndrome to redress health inequities due to lifestyle and social determinants resulting from having a lifelong disability Community participation for adults with Down syndrome occurred relatively infrequently and was restricted for many Community participation could be improved by modifying contextual factors such as optimising social and logistical supports It is important to facilitate community participation for people with Down syndrome to redress health inequities due to lifestyle and social determinants resulting from having a lifelong disability
DOI: 10.6084/m9.figshare.28564420.v2
title: Community participation in adults with Down syndrome: a scoping review

description: Community participation is important for social inclusion and is a focus of government policies that aim to enhance the lives of people with disability, including those with Down syndrome. This scoping review aimed to synthesise research on community participation in adults with Down syndrome. A comprehensive search was completed in Medline, EMBASE, PsycINFO and CINAHL databases. The PRISMA-ScR guidelines informed reporting, and the evidence was synthesised using the International Classification of Functioning, Disability and Health, and the Family of Participation Constructs frameworks. Twenty-six articles with 12,461 participants met the inclusion criteria. Our results indicate: i) many studies did not conceptualise or investigate community participation as a distinct concept; ii) although adults with Down syndrome engaged in a diverse range of activities, particularly related to recreation and leisure, participation was restricted for a large proportion of adults; and iii) personal contextual factors that influenced community participation were age and adaptive function; and environmental factors included parental involvement, social and logistical supports, and place of residence. This new knowledge contributes to our understanding of community participation of adults with Down syndrome by identifying areas where future research or interventions could be made to improve their health and wellbeing. Community participation for adults with Down syndrome occurred relatively infrequently and was restricted for manyCommunity participation could be improved by modifying contextual factors such as optimising social and logistical supportsIt is important to facilitate community participation for people with Down syndrome to redress health inequities due to lifestyle and social determinants resulting from having a lifelong disability Community participation for adults with Down syndrome occurred relatively infrequently and was restricted for many Community participation could be improved by modifying contextual factors such as optimising social and logistical supports It is important to facilitate community participation for people with Down syndrome to redress health inequities due to lifestyle and social determinants resulting from having a lifelong disability
DOI: 10.6084/m9.figshare.28450198
title: Development and evaluation of tailored, theory-informed training to support the implementation of an outcome measure: an explanatory sequential mixed method study

description: We aimed to describe the development of a tailored, theory-informed training session for an outcome measure (the Mayo-Portland Adaptability Inventory), and evaluate the session’s impact on clinician reactions, learning, and behavioural intent. We developed the training session using an integrated knowledge translation approach with stroke outpatient rehabilitation clinicians in Québec, Canada. We conducted a mixed-method explanatory sequential evaluation informed by the New World Kirkpatrick Model (reaction, learning, behavioural intent) composed of three surveys followed by interviews. We analyzed survey data using cumulative link mixed models, and interviews using directed content analysis. Eighty clinicians attended the training session, of which 51 responded to the surveys and 6 participated in interviews. Odds ratios indicate that individuals were more likely to rate themselves higher post-training on most outcomes. During the interviews, participants indicated that: they experienced positive reactions, learning and behavioural impacts from the session, negative attitudes and commitment were due to perceived limitations in the outcome measure, and training impacts were affected by contextual factors including a provincial mandate for the measure. Implementation teams could adapt this training design process to their context. Further research to understand how educational strategies work would produce more robust guidance. Outcome measures are underused in rehabilitation settings such that their expected benefits are not being realized.Theory-informed educational strategies could be leveraged to facilitate the uptake of outcome measures into practice.In this study, we identified the specific theory-informed components of the training session that produced positive impacts on clinicians’ learning and behavioural intent up to 8-weeks post-training.The theory-informed components of the training session that had positive effects (i.e., those linked to competence including demonstration of the behaviour and behavioural practice) could be adapted by others implementing outcome measures in their setting. Outcome measures are underused in rehabilitation settings such that their expected benefits are not being realized. Theory-informed educational strategies could be leveraged to facilitate the uptake of outcome measures into practice. In this study, we identified the specific theory-informed components of the training session that produced positive impacts on clinicians’ learning and behavioural intent up to 8-weeks post-training. The theory-informed components of the training session that had positive effects (i.e., those linked to competence including demonstration of the behaviour and behavioural practice) could be adapted by others implementing outcome measures in their setting.
DOI: 10.6084/m9.figshare.28450198.v1
title: Development and evaluation of tailored, theory-informed training to support the implementation of an outcome measure: an explanatory sequential mixed method study

description: We aimed to describe the development of a tailored, theory-informed training session for an outcome measure (the Mayo-Portland Adaptability Inventory), and evaluate the session’s impact on clinician reactions, learning, and behavioural intent. We developed the training session using an integrated knowledge translation approach with stroke outpatient rehabilitation clinicians in Québec, Canada. We conducted a mixed-method explanatory sequential evaluation informed by the New World Kirkpatrick Model (reaction, learning, behavioural intent) composed of three surveys followed by interviews. We analyzed survey data using cumulative link mixed models, and interviews using directed content analysis. Eighty clinicians attended the training session, of which 51 responded to the surveys and 6 participated in interviews. Odds ratios indicate that individuals were more likely to rate themselves higher post-training on most outcomes. During the interviews, participants indicated that: they experienced positive reactions, learning and behavioural impacts from the session, negative attitudes and commitment were due to perceived limitations in the outcome measure, and training impacts were affected by contextual factors including a provincial mandate for the measure. Implementation teams could adapt this training design process to their context. Further research to understand how educational strategies work would produce more robust guidance. Outcome measures are underused in rehabilitation settings such that their expected benefits are not being realized.Theory-informed educational strategies could be leveraged to facilitate the uptake of outcome measures into practice.In this study, we identified the specific theory-informed components of the training session that produced positive impacts on clinicians’ learning and behavioural intent up to 8-weeks post-training.The theory-informed components of the training session that had positive effects (i.e., those linked to competence including demonstration of the behaviour and behavioural practice) could be adapted by others implementing outcome measures in their setting. Outcome measures are underused in rehabilitation settings such that their expected benefits are not being realized. Theory-informed educational strategies could be leveraged to facilitate the uptake of outcome measures into practice. In this study, we identified the specific theory-informed components of the training session that produced positive impacts on clinicians’ learning and behavioural intent up to 8-weeks post-training. The theory-informed components of the training session that had positive effects (i.e., those linked to competence including demonstration of the behaviour and behavioural practice) could be adapted by others implementing outcome measures in their setting.
DOI: 10.6084/m9.figshare.28564420.v1
title: Community participation in adults with down syndrome: a scoping review

description: Community participation is important for social inclusion and is a focus of government policies that aim to enhance the lives of people with disability, including those with Down syndrome. This scoping review aimed to synthesise research on community participation in adults with Down syndrome. A comprehensive search was completed in Medline, EMBASE, PsycINFO and CINAHL databases. The PRISMA-ScR guidelines informed reporting, and the evidence was synthesised using the International Classification of Functioning, Disability and Health, and the Family of Participation Constructs frameworks. Twenty-six articles with 12,461 participants met the inclusion criteria. Our results indicate: i) many studies did not conceptualise or investigate community participation as a distinct concept; ii) although adults with Down syndrome engaged in a diverse range of activities, particularly related to recreation and leisure, participation was restricted for a large proportion of adults; and iii) personal contextual factors that influenced community participation were age and adaptive function; and environmental factors included parental involvement, social and logistical supports, and place of residence. This new knowledge contributes to our understanding of community participation of adults with Down syndrome by identifying areas where future research or interventions could be made to improve their health and wellbeing. Community participation for adults with Down syndrome occurred relatively infrequently and was restricted for manyCommunity participation could be improved by modifying contextual factors such as optimising social and logistical supportsIt is important to facilitate community participation for people with Down syndrome to redress health inequities due to lifestyle and social determinants resulting from having a lifelong disability Community participation for adults with Down syndrome occurred relatively infrequently and was restricted for many Community participation could be improved by modifying contextual factors such as optimising social and logistical supports It is important to facilitate community participation for people with Down syndrome to redress health inequities due to lifestyle and social determinants resulting from having a lifelong disability
DOI: 10.6084/m9.figshare.28944536
title: Enhancing exoskeleton technology through co-creation with clinicians and patients: a pilot study and comparative analysis of the ABLE exoskeleton

description: Wearable lower-limb robotic exoskeletons have emerged as promising tools for locomotor training in individuals with spinal cord injury (SCI). However, their bulky size, high cost, and limited usability hinder widespread acceptance. User-centered methods identifying end-users’ unique insights are key to meet their specific challenges. This paper presents the co-creation methodology in developing the ABLE Exoskeleton, evolving from a knee-powered prototype (<i>ABLEknee</i>) to a hip-knee-powered exoskeleton (<i>ABLEhipknee</i>). A 3-phase co-creation methodology is presented. Results from a pilot study with the <i>ABLEhipknee</i> over a 10-session training program on five non-ambulatory SCI participants and a comparative analysis with the <i>ABLEknee</i> are presented as evidence of the co-creation effectiveness. Trial Registration: NCT05590065. Improvements in walking time, steps, and distance, fewer device-related adverse events, lower assistance levels for therapy activities, 3-minute longer donning/doffing time with similar assistance levels, and higher user satisfaction scores for the <i>ABLEhipknee</i> compared to the <i>ABLEknee</i> were observed. The <i>ABLEhipknee</i> is a safe, feasible tool for gait rehabilitation in SCI individuals in hospital settings, with better performance and higher user satisfaction than the <i>ABLEknee</i>. The pilot study highlights the positive impact of co-creation involving SCI individuals and therapists in developing rehabilitation technology. Further research is encouraged to validate these preliminary results. Engaging end-users and therapists in the development of rehabilitation technology throughout the iterative design process results in more clinically relevant design solutions.Usability testing of exoskeleton technology in the intended environment with the intended users is crucial throughout the development process, and not only in the evaluation phase.The co-creation process followed during the development of the ABLE Exoskeleton revealed that the key characteristics of an exoskeleton for the rehabilitation of people with spinal cord injury are versatility, trunk stability, and ease of use. Engaging end-users and therapists in the development of rehabilitation technology throughout the iterative design process results in more clinically relevant design solutions. Usability testing of exoskeleton technology in the intended environment with the intended users is crucial throughout the development process, and not only in the evaluation phase. The co-creation process followed during the development of the ABLE Exoskeleton revealed that the key characteristics of an exoskeleton for the rehabilitation of people with spinal cord injury are versatility, trunk stability, and ease of use.
DOI: 10.6084/m9.figshare.28944536.v1
title: Enhancing exoskeleton technology through co-creation with clinicians and patients: a pilot study and comparative analysis of the ABLE exoskeleton

description: Wearable lower-limb robotic exoskeletons have emerged as promising tools for locomotor training in individuals with spinal cord injury (SCI). However, their bulky size, high cost, and limited usability hinder widespread acceptance. User-centered methods identifying end-users’ unique insights are key to meet their specific challenges. This paper presents the co-creation methodology in developing the ABLE Exoskeleton, evolving from a knee-powered prototype (<i>ABLEknee</i>) to a hip-knee-powered exoskeleton (<i>ABLEhipknee</i>). A 3-phase co-creation methodology is presented. Results from a pilot study with the <i>ABLEhipknee</i> over a 10-session training program on five non-ambulatory SCI participants and a comparative analysis with the <i>ABLEknee</i> are presented as evidence of the co-creation effectiveness. Trial Registration: NCT05590065. Improvements in walking time, steps, and distance, fewer device-related adverse events, lower assistance levels for therapy activities, 3-minute longer donning/doffing time with similar assistance levels, and higher user satisfaction scores for the <i>ABLEhipknee</i> compared to the <i>ABLEknee</i> were observed. The <i>ABLEhipknee</i> is a safe, feasible tool for gait rehabilitation in SCI individuals in hospital settings, with better performance and higher user satisfaction than the <i>ABLEknee</i>. The pilot study highlights the positive impact of co-creation involving SCI individuals and therapists in developing rehabilitation technology. Further research is encouraged to validate these preliminary results. Engaging end-users and therapists in the development of rehabilitation technology throughout the iterative design process results in more clinically relevant design solutions.Usability testing of exoskeleton technology in the intended environment with the intended users is crucial throughout the development process, and not only in the evaluation phase.The co-creation process followed during the development of the ABLE Exoskeleton revealed that the key characteristics of an exoskeleton for the rehabilitation of people with spinal cord injury are versatility, trunk stability, and ease of use. Engaging end-users and therapists in the development of rehabilitation technology throughout the iterative design process results in more clinically relevant design solutions. Usability testing of exoskeleton technology in the intended environment with the intended users is crucial throughout the development process, and not only in the evaluation phase. The co-creation process followed during the development of the ABLE Exoskeleton revealed that the key characteristics of an exoskeleton for the rehabilitation of people with spinal cord injury are versatility, trunk stability, and ease of use.