The Importance of Collaboration in Pediatric Rehabilitation for the Construction of Participation: The Views of Parents and Professionals

Purpose: Collaboration between parents and professionals is essential to enable participation of children with disabilities. Participation is a widely researched topic in pediatric rehabilitation, and evidence for it providing opportunities for involvement and a sense of belonging in community and in larger society exists. There are, however, less research results on how collaboration builds participation pertaining to involvement in life situations. In collaboration with parents, therapists and teachers, the aim of the study was to describe factors that (a) promote and (b) prevent participation in life situations for school-aged children with disabilities, working towards participation in adulthood. Methods: The study applied a qualitative research design. The data was collected during the 2015–2016 academic year with five focus-group interviews by sampling procedure. The study involved five parents of children with disabilities, three therapists and two teachers. The research data was analyzed by inductive content analysis. Results: The results identified thirteen factors that promote child participation, with an emphasis on taking the child’s individuality into account. There were three barriers, which focused on attitudes or technical issues. Conclusions: The results suggest that collaboration on child-related factors has been well identified and implemented, but collaboration on enabling environmental factors needs to be developed. The results can be utilized to design what adults’ collaboration should focus on in promoting child participation.

Using a Co-design Approach to Create Tools to Facilitate Physical Activity in Children With Physical Disabilities

Introduction: There is a lack of effective interventions available for Pediatric Physical Therapists (PPTs) to promote a physically active lifestyle in children with physical disabilities. Participatory design methods (co-design) may be helpful in generating insights and developing intervention prototypes for facilitating a physically active lifestyle in children with physical disabilities (6–12 years).Materials and methods: A multidisciplinary development team of designers, developers, and researchers engaged in a co-design process–together with parents, PPTs, and other relevant stakeholders (such as the Dutch Association of PPTs and care sports connectors). In this design process, the team developed prototypes for interventions during three co-creation sessions, four one-week design sprint, living-lab testing and two triangulation sessions. All available co-design data was structured and analyzed by three researchers independently resulting in themes for facilitating physical activity.Results: The data rendered two specific outcomes, (1) knowledge cards containing the insights collected during the co-design process, and (2) eleven intervention prototypes. Based on the generated insights, the following factors seem important when facilitating a physically active lifestyle: a) stimulating self-efficacy; b) stimulating autonomy; c) focusing on possibilities; d) focusing on the needs of the individual child; e) collaborating with stakeholders; f) connecting with a child's environment; and g) meaningful goal setting.Conclusion: This study shows how a co-design process can be successfully applied to generate insights and develop interventions in pediatric rehabilitation. The designed prototypes facilitate the incorporation of behavioral change techniques into pediatric rehabilitation and offer new opportunities to facilitate a physically active lifestyle in children with physical disabilities by PPTs. While promising, further studies should examine the feasibility and effectivity of these prototypes.

Comparative effects of community-based family-child-centered care and conventional pediatric rehabilitation for cerebral palsy

BACKGROUND: While the transdisciplinary-based rehabilitation provided ample evidence on improving impairment (body structure and functions) levels, the therapeutic effects on the international classification of functioning, disability, and health (ICF) domains are unknown in cerebral palsy (CP). OBJECTIVE: To compare the effects of the community-based family-child-centered care (CFC) and conventional pediatric rehabilitation (CPR) on the physical, cognitive, sensory, and social integration domains in children and adolescents with CP. METHODS: Twenty-six participants with CP (mean age = 9.37±5.24, 14 females) were assigned into either CPR or CFC groups. Clinical outcomes included gross motor function measure (GMFM-66), Pediatric Balance Scale (PBS), fine motor area of Bruininks-Oseretsky Test of Motor Proficiency-2 (BOT-2), Functional Independence Measure (FIM) cognition area, Short Sensory Profile (sSP), COPM, Pediatrics Quality of Life (PedsQL) questionnaire, Short Falls Efficacy Scale (sFES), and Dynamic Postural Instability (DPI). An analysis of variance (ANOVA) and an analysis of covariance (ANCOVA) was conducted at P < 0.05. RESULTS: ANOVA revealed the superior effects of CFC in GMFM-66, PBS, BOT-2, FIM, and PedsQL compared to CPR (P < 0.05). ANCOVA showed the superior effects of CFC in Z-axis of DPI than CPR (P < 0.05). CONCLUSIONS: Our results provide novel, promising clinical evidence that CFC was more effective than CPR at improving impairment, activity, as well as participation levels in participants with CP.

Evaluation of Pediatric-Specific Wheelchair-Skills-Training Tools By Primary Users: A Descriptive Qualitative Study

Background Children’s ability to engage in meaningful occupations is positively influenced by their ability to move independently. Preliminary evidence in children suggests that wheelchair skills training improves wheelchair skills, which are critical for wheelchair mobility. The Wheelchair Skills Training Program is a standardized program to teach wheelchair skills. However, it is underutilized in pediatric rehabilitation settings. To address perceived barriers to training, three pediatric-specific Wheelchair Skills Training Program tools for indoor skills were developed (i.e., a storybook, four instructional posters, and a workbook). This study aimed to document occupational therapists’ and pediatric manual wheelchair users’ satisfaction and perspectives on the usability, relevance, and feasibility of these tools. Method A descriptive qualitative research design was used. A focus group was conducted with occupational therapists and interviews were conducted pediatric manual wheelchair users to obtain their feedback on the tool prototypes to facilitate refinement and to ensure they meet users’ needs. Results Eight occupational therapists and five pediatric manual wheelchair users expressed general satisfaction with the tools, describing them as usable, relevant and feasible to integrate into wheelchair skills training with novice wheelchair users and younger children. All occupational therapists and three pediatric manual wheelchair users expressed the desire to use the tools for wheelchair skills training. Two children expressed that the tools were more relevant for beginner wheelchair users only. The participants suggested minor modifications to make the tools more accessible for children (e.g., more action in the story, increased precision of illustrations related to the characters’ position in the wheelchair). Conclusion Occupational therapists and pediatric manual wheelchair users perceived the tools to have high potential to facilitate the use of the Wheelchair Skills Training Program in pediatric rehabilitation settings. After making the recommended modifications, the tools will be ready for pilot testing in pediatric rehabilitation settings.

Parents’ Perceptions of the Value of Children’s Participation in Pediatric Rehabilitation Services: A Phenomenographic Study

Ensuring that children have opportunities to be involved in decision-making regarding their own care is associated with quality improvement in pediatric rehabilitation. The aim of the study was to explore parents’ perceptions of the value of children’s participation in pediatric rehabilitation services. Semi-structured interviews were conducted with 17 parents of children with disabilities who visited pediatric rehabilitation services. A phenomenographic analysis method was used. Three categories developed from the analysis describing how participation generated value in terms of empowerment, self-awareness, and independence. The outcome space describes a hierarchical relationship between the categories and their influence on each other. Independence achieved through participation was a core aspect and is at the highest level in the hierarchy since it includes and depends on the outcomes from both empowerment and self-awareness. Parents’ perceptions of the value of children’s participation in pediatric rehabilitation services include the possibility for the child to use their entire capacity through values created in terms of empowerment, self-awareness, and independence, in order to live the best life possible. Children with disabilities are diverse as a group, and further research to identify barriers and facilitators of participation is needed to adjust interventions within pediatric rehabilitation services to ensure that children with disabilities can be increasingly empowered, self-aware, and independent.