Co-design for stroke intervention development: Results of a scoping review.

BACKGROUND: Co-design methodology seeks to actively engage end-users in developing interventions. It is increasingly used to design stroke interventions; however, limited guidance exists, particularly with/for individuals with stroke who have diverse cognitive, physical and functional abilities. Thus, we describe 1) the extent of existing research that has used co-design for stroke intervention development and 2) how co-design has been used to develop stroke interventions among studies that explicitly used co-design, including the rationale, types of co-designed stroke interventions, participants involved, research methodologies/approaches, methods of incorporating end-users in the research, co-design limitations, challenges and potential strategies reported by researchers. MATERIALS AND METHODS: A scoping review informed by Joanna Briggs Institute and Arksey & O'Malley methodology was conducted by searching nine databases on December 21, 2022, to locate English-language literature that used co-design to develop a stroke intervention. Additional data sources were identified through a hand search. Data sources were de-duplicated, and two research team members reviewed their titles, abstracts and full text to ensure they met the inclusion criteria. Data relating to the research objectives were extracted, analyzed, and reported numerically and descriptively. RESULTS: Data sources used co-design for stroke intervention development with (n = 89) and without (n = 139) explicitly using the term 'co-design.' Among studies explicitly using co-design, it was commonly used to understand end-user needs and generate new ideas. Many co-designed interventions were technology-based (65%), and 48% were for physical rehabilitation or activity-based. Co-design was commonly conducted with multiple participants (82%; e.g., individuals with stroke, family members/caregivers and clinicians) and used various methods to engage end-users, including focus groups and workshops. Limitations, challenges and potential strategies for recruitment, participant-engagement, contextual and logistical and ethics of co-designed interventions were described. CONCLUSIONS: Given the increasing popularity of co-design as a methodology for developing stroke interventions internationally, these findings can inform future co-designed studies.

Social network size and mental health outcomes in youth with neuroinflammatory disorders.

BACKGROUND: 75 % of youth with MS report symptoms of fatigue, depression, and anxiety. Social network size (number of people in an individual's network) is known to have positive impacts on health and health behavior in pediatric populations and in individuals with multiple sclerosis. OBJECTIVES: To estimate associations between social network size (SNS) and depression, anxiety, symptoms of post-traumatic stress disorder (PTSD), and quality of life among youth with recurrent neuroinflammatory disorders (RNI) in comparison to that of youth with monophasic acquired demyelinating syndrome (mono-ADS). METHODS: Youth with RNI and mono-ADS were recruited from the Pediatric Neuroinflammatory Disorders Clinic at the Hospital for Sick Children between September 2020 and August 2022. After consent, participants completed the questionnaires on social network composition, depression, anxiety, PTSD, and quality of life. Descriptive and inferential analyses were conducted for differences between cohorts and correlations. RESULTS: Youth with RNI (n = 37, Female= 22, Median age= 15, IQR= 3) and mono-ADS (n = 23, Female= 12, Median age= 14, IQR= 4.5) did not differ in: SNS, depression, anxiety, PTSD, and quality of life. Larger SNS was associated with lower anxiety (rs= -0.350, p<0.05) in youth with RNI and youth with RNI who presented anxiety disorder had significantly lower number of social contacts than those who did not (t = 2.23, p = 0.033, ES= 0.90) but not in mono-ADS. When analyzing the two cohorts grouped together, all youth who screened for anxiety had significantly smaller network size than those who did not (t = 2.06, p = 0.045, ES= 0.66). This was similar with those who screened for depression (t = 2.05, p = 0.046, ES= 0.58). CONCLUSIONS: In youth with RNI, SNS was associated with anxiety. SNS is one important aspect of social networks that have the potential to shape mental health in youth with neuroinflammatory disorders. Future studies should focus on social network composition, strength of ties, and types of support in shaping health outcomes.

Characteristics of Inclusive Web-Based Leisure Activities for Children With Disabilities: Qualitative Descriptive Study.

BACKGROUND: The participation of children with disabilities in leisure activities is a key determinant of their physical and mental health. The COVID-19 pandemic has limited participation in leisure activities for all children, particularly those with disabilities. As a result, children with disabilities may be less active while feeling more isolated and stressed. Web-based communities and activities have become increasingly important. Understanding how web-based activities include or exclude children with disabilities can contribute to the development of inclusive communities that may support participation after the pandemic. OBJECTIVE: This study aimed to identify factors that may facilitate or prevent the participation of children with disabilities in web-based leisure activities. METHODS: We adopted a qualitative descriptive interpretative methodology and conducted interviews with 2 groups of participants: service providers offering inclusive web-based leisure activities and parents of children with disabilities who have engaged in web-based leisure activities during the COVID-19 pandemic. A semistructured interview format was created based on the Theoretical Domains Framework. The questions focused on the description of the web-based activities offered by the service provider (eg, age range, frequency, cost, target population, and type of activity offered) and any adaptations to make the web-based activity accessible to children and youth with disabilities, and their perceptions and beliefs about what supported or deterred participation in the activities. RESULTS: A total of 17 participants described their experiences in participating in and creating web-based leisure programs and the factors preventing or facilitating children's participation in web-based activities. Environment and context factors included accommodations, the format of activities and the web-based setting, stakeholder involvement, and materials and resources available. Activities that had flexible schedules, both recorded and live options for joining, and that provided clear instructions and information were perceived as more accessible. Beliefs involved the characteristics of the child and the family environment, as well as the characteristics of the organizations providing the activity. Activity facilitators who were familiar with the web-based environment and knew the specific characteristics of the child facilitated their participation. Engagement in community champions and respect for children's individual preferences were perceived as positive. Access to technology, funding, and caregivers' ability to facilitate child engagement are crucial factors that must be considered when offering web-based programs. CONCLUSIONS: Web-based environments offer an accessible and safe option for leisure participation when public health conditions prevent children with disabilities from participating in in-person activities. However, to make web-based activities accessible to children with a variety of disabilities, there needs to be a clear plan toward universal web-based accessibility that accounts for individual needs and collective approaches to web-based leisure. Future work should consider developing and testing guidelines for web-based accessibility, equity, public policy, and programming considerations in offering these activities for all children.

Content development of the Child Community Health Inclusion Index: An evaluation tool for measuring inclusion of children with disabilities in the community.

BACKGROUND: Addressing barriers in the environment can contribute to health and quality of life for children with disabilities and their families. The Community Health Inclusion Index (CHII) is a measurement tool developed in the United States to identify environmental barriers and facilitators to community health inclusion. The CHII adopts an adult viewpoint and aspects crucial for children may have been omitted. AIMS: This study aimed to develop a comprehensive list of items that are relevant for the community inclusion of children with disabilities in the Canadian context. METHODS: The relevance and priority of items generated from a review of existing guidelines and best practice recommendations for community inclusion were rated as a dichotomous response and discussed by an expert panel in relevant fields related to children with disabilities. RESULTS: A total of 189 items from 12 instruments and best practice guidelines were identified. Expert consensus contributed to a relevant and comprehensive list of items. Expert suggestions were considered to refine and reduce the item list. CONCLUSION: This study highlights the importance of a child version of a community inclusion tool, as the needs of children with disabilities differ from those of adults. It can help communities improve inclusion of children with disabilities and inform health promotion initiatives for this population.

The Effect of Context-Based Interventions at the Systems-Level on Participation of Children with Disabilities: A Systematic Review.

AIMS: To synthesize evidence on the impact of context-based interventions on the participation of children with disabilities in the community. METHODS: A systematic review was conducted using the American Academy for Cerebral Palsy and Developmental Medicine Guidelines for systematic reviews. Seven databases were searched; articles included were on children with developmental disabilities under the age of 19 years, describing systems-level, context-based interventions aimed to improve participation and Participation-related outcomes of the Family of Participation-related Constructs framework. Intervention characteristics were coded using the Community Wellbeing Framework (CWF). RESULTS: Eleven articles were included for knowledge synthesis. Four studies were level I, II, and III based on the Center for Evidence-Based Medicine hierarchy. All four showed that context-based interventions had a positive effect on participation and participation-related outcomes. All 11 studies had intervention properties that were coded to at least one domain on the CWF. CONCLUSION: There is a scarcity of high-quality studies that focus on context-based interventions at the systems-level, as opposed to the individual-level. Albeit low-level quality, existing evidence emphasized the importance of using known facilitators to participation, such as staff training, peer mentorship, awareness-raising, and development of partnerships to change the system and promote participation.

Changes in Use of a Leisure Activity Mobile App for Children With Disabilities During the COVID-19 Pandemic: Retrospective Study.

BACKGROUND: Participation in leisure activities is essential for child development and a human right as per the United Nations Convention on the Rights of the Child. Children with disabilities face several restrictions when participating in leisure activities as compared to same age peers without disabilities. Access to information about accessible, inclusive leisure activities is one of the barriers limiting participation, and one potential health promotion strategy is to provide access to information to increase participation. The Jooay App is a mobile app listing such activities in Canada and Australia. With the COVID-19 global pandemic and subsequent public health measures, most community-based facilities providing the activities listed on Jooay were closed. The app therefore started listing online activities offered with the expectation of continuing to provide information for families and understanding the extent to which users relied on the mobile app as a tool to identify new safe leisure opportunities. OBJECTIVE: This study aims to describe the engagement of the Jooay app before and during COVID-19, and to estimate the extent to which the listing of online activities was related to the engagement of the Jooay app. METHODS: We conducted a retrospective study comparing Jooay app use between March 2020 and February 2021 to the engagement between March 2019 and February 2020 by Jooay users. Spearman rank correlations were carried out to identify associations between the activities listed and the users' engagement from May 2020 to February 2021. RESULTS: Active engagement with the Jooay app from March 2020 to February 2021 dropped by an average of 135 engagements (64.2%) compared to engagements in 2019-2020. The largest monthly drop in engagement was observed in May 2020 by 239 engagements (88.8%). There was a strong positive correlation between the number of active users and the number of online activities listed on the app (rs=0.900). CONCLUSIONS: The engagement with the Jooay App presented an expected decrease during the first wave of the COVID-19 pandemic. The addition of online adapted leisure activities to the app's listings during the pandemic increased app use. Access to information about inclusive activities is a barrier for children with disabilities to engage in leisure. Mobile health solutions can be responsive to contextual factors and consider the social determinants of health such as socioeconomic and public health emergency issues that can impact the participation of vulnerable populations such as children with disabilities and help eliminate barriers to participation. The provision of online leisure opportunities during the pandemic could facilitate participation in these activities during the pandemic and beyond, which is essential and beneficial for the physical and mental well-being of children with disabilities and their families.