The suitability and acceptability of a co-designed prototype psychoeducational activity book for autistic children aged five-eleven years.

Background and aims: Evidence suggests that autistic children and young people (CAYP) can benefit from age-appropriate psychoeducation. Co-design is a methodology that iteratively involves end users and stakeholders in producing an intervention which may increase engagement and impact. Few age-appropriate co-designed psychoeducation resources for autistic CAYP exist. Therefore, a paper-based resource was co-designed for autistic CAYP who attend mainstream primary education. The resource aims to educate CAYP about their autism and provide strategies to support them to live well with their autism. Methods: This paper describes the evaluation of the prototype resource through online workshops with 12 families and input from four specialist clinicians. The suitability and acceptability of the resource was explored, and sketch notes were taken for respondent validity and engagement purposes. Results: A reflexive thematic analysis identified six themes and two subthemes: (1) content appropriateness (subtheme: strategies and unpredictability); (2) relating to content, (3) feelings and emotions, (4) terminology (subtheme: literal thinking); (5) positivity, and (6) communication aid. Suggested improvements were also identified. Results suggest the resource is suitable and acceptable. Conclusions: Future intervention development research may consider individual differences of autistic CAYP and the co-design of resources for other age groups of neurodiverse populations.

Meaningful involvement of children and young people in health technology development.

The anatomical, physiological, and developmental changes which arise as children mature through childhood and adolescence support the need to develop new health technologies that meet the specific requirements of children and young people (CYP). Failing to involve CYP during the development of technology increases the risk that the outcome falls short of their expectations and needs, leading to rejection of novel interventions. Through participation in health technology development, CYP and their families can provide context, insight, personal experience and tacit knowledge to ensure that the end-product is usable, acceptable, and can be integrated into its intended environment. A nuanced, balanced understanding of the methods that can be used to facilitate participation will support researchers in choosing an effective approach to involving CYP in health technology development. Methodological approaches include patient and public involvement and engagement, co-design, and experienced based co-design. These methods can be used in isolation or in combination, to facilitate meaningful involvement of CYP and encourage the development of impactful solutions, in consideration of the context, stakeholders, and objectives of the project. We provide the rationale and justification for involving CYP in health technology design and development, an explanation of the methods supporting meaningful involvement, and case studies exemplifying real world application of these methods with positive outputs.

Developing a paediatric healthcare research network: key learnings from the 'starworks' child prosthetics project.

The context of child prosthetics is a complex and important area for research and innovation. Yet, like many areas of paediatric medical technology development, there are several barriers to innovating specifically for the unique needs of children (i.e., a relatively small patient population or 'market'). As such, much child prosthetics technology is developed from the downsizing of adult prosthetics, leading to suboptimal outcomes for children and young people. Since 2016, the Starworks Child Prosthetics Research Network has been exploring this space, bringing children and their families together with key opinion leaders from the NHS, clinical Academia and leading National Research Centres with capabilities in child prosthetics with the aim of increasing research across the system. Above all else, Starworks is centred on the needs of children and their families, ensuring they have an equal voice in driving the ongoing research agenda. This article will share key learnings from the creation and development of the Starworks Network that may be applicable and/or adaptable across a wider paediatric medical technology research and innovation landscape. In particular it will discuss how it addressed three key aims of; (1) Addressing child-specific issues; (2) Building a sustainable network; and (3) Fostering impactful innovation.