Transition from child-centred to adult-oriented healthcare systems for young people with neurodisability: a scoping review protocol [version 1; peer review: 3 approved]

Background: The transition from child-centred to adult-oriented healthcare is a challenging time for young people with neurodisability. As the prevalence of neurodisability increases, greater numbers of young people will eventually transfer to the adult healthcare system. While there is a growing recognition of the importance of providing quality, transitional care, little is known about how to manage and optimise this process for young people with neurodisability. The objective of this scoping review is to examine and map existing literature related to the transition from child-centred to adult-oriented healthcare systems for young people with neurodisability.  Methods: Systematic literature searches of OVID MEDLINE, EMBASE, PsycINFO, CINAHL, Cochrane Library and Web of Science will be conducted from inception to present. A structured iterative search of grey literature will be conducted. This review will consider all study designs examining the transition from child to adult health services in neurodisability. Two reviewers will independently screen each retrieved title and abstract and assess full-text articles against the inclusion criteria to determine eligibility. Data will be extracted and synthesised quantitatively and qualitatively. The process and reporting will follow PRISMA-ScR guidelines.  Conclusion: This review will provide a broad and systematically mapped synthesis of the extent and nature of the available published and unpublished literature on transition from child-centred to adult-oriented healthcare systems in neurodisability. The results will be used to determine gaps in the current evidence base in order to prioritise areas for future research. </p

Transition from child to adult services for young people with cerebral palsy in Ireland: influencing factors at multiple ecological levels

Aim: To explore the factors that influence the process of transitioning from child to adult services in Ireland among young people with cerebral palsy, their parents, and service providers. Method: This study followed a qualitative descriptive approach. Semi-structured interviews were conducted with 54 participants, including young people with cerebral palsy aged 16 to 22 years (n = 13), their parents (n = 14), and service providers (n = 27). Data were analysed using the Framework Method. Findings were categorized using an ecological model across four levels: individual, microsystem, mesosystem, and exosystem. Results: Limited awareness, preparation, and access to information hindered successful transition. Microsystem factors such as family knowledge, readiness, resilience, and health professional expertise influenced transition experience. Mesosystem factors encompassed provider-family interaction, interprofessional partnerships, and interagency collaboration between child and adult services. Exosystem factors included inadequate availability and distribution of adult services, limited referral options, coordination challenges, absence of transition policies, staffing issues, and funding allocation challenges. Interpretation: Transition is influenced by diverse factors at multiple ecological levels, including interactions within families, between health professionals, and larger systemic factors. Given the complexity of transition, a comprehensive multi-level response is required, taking into account the interactions among individuals, services, and systems.</p

Transition from child to adult health services for young people with cerebral palsy in Ireland: a mixed-methods study protocol

Introduction: The transition from child to adult health services is a challenging and complex process for young people with cerebral palsy (CP). Poorly managed transition is associated with deterioration in health, increased hospitalisations and reduced quality of life. While international research identifies key practices that can improve the experience and outcomes of transition, there is a paucity of data in the Irish context. This research study aims to gain an insight into the experience of transition for young people with CP in Ireland. Methods and analysis: A convergent parallel mixed-methods design will be used to collect, analyse and interpret quantitative and qualitative data. Participants will be young people aged 16-22 years with CP, their parent(s)/carer(s) and service providers. Quantitative and qualitative data will be collected through questionnaires and interviews, respectively. Quantitative data will be reported using descriptive statistics. Where sufficient data are collected, we will examine associations between the experience of transition practices and sociodemographic and CP-related factors, respectively, using appropriate regression models. Associations between service provider characteristics and provision of key transition practices may also be explored using appropriate regression models. Qualitative data will be analysed using the Framework Method. A coding matrix based on key transitional practices identified from the literature will be used to identify convergence and divergence across study components at the integration stage. Ethics and dissemination: The study has been approved by the RCSI University of Medicine and Health Sciences Research Ethics Committee (REC201911010). Results will be presented to non-academic stakeholders through a variety of knowledge translation activities. Results will be published in open access, peer-reviewed journals and presented at national and international scientific conferences.</p

Co-designing resources to support the transition from child to adult health services for young people with cerebral palsy: a design thinking approach

Introduction: Design thinking is a human-centred process that aims to identify the needs of end-users and iteratively develop solutions. Involving end-users in the development and design of solutions may enhance effectiveness by increasing focus on the needs of the target population. This paper describes the process of co-designing resources to support the transition from child-centred to adult-orientated health services using a design thinking approach. Methods: Five co-design workshops were conducted remotely with a young person advisory group and parent advisory group. A design thinking process guided by the Stanford D.School approach was used to understand the transition needs of young people and their parents and iteratively develop solutions to improve end-user experience. Results: Eight resource prototypes were generated: (1) designated transition coordinator, (2) digital stories of transition experience (3) written informational support (4) transition website, (5) transition checklists and worksheets (6) transition app, (7) transition programme or course and (8) educational programme for health professionals. Conclusion: Design thinking is a feasible approach to identify, characterise and prioritise resources collaboratively with end-user partners.</p

'I can do this': a qualitative exploration of acceptability and experiences of a physical activity behaviour change intervention in people with multiple sclerosis in the UK

Objectives: The purpose of this study was to explore the experiences of people with multiple sclerosis (MS) who participated in iStep-MS, a feasibility randomised controlled trial of a behaviour change intervention that aimed to increase physical activity and reduce sedentary behaviour. Design: A qualitative approach was undertaken embedded in the feasibility randomised controlled trial. One-to-one semi-structured interviews were conducted and analysed using Framework analysis. Setting: Participants were recruited from a single MS therapy centre in the southeast of England, UK. Participants: Sixty people with MS were randomly allocated in a 1:1 ratio to the intervention or usual care. Following a purposive sampling strategy, 15 participants from the intervention arm undertook 1:1 semi-structured interviews. Interventions: The iStep-MS intervention consisted of four therapist-led sessions over 12 weeks, supported by a handbook and pedometer. Results: Three themes were identified from the data. "I can do this": developing competence in physical activity highlights the enhanced physical activity confidence gained through goal setting and accomplishment. "I felt valued": the nurturing culture provides an overview of the supportive and non-judgemental environment created by the programme structure and therapeutic relationship. Finally, "What can I do?": empowered enactment describes the transition from the supported iStep-MS intervention to intrinsically motivated physical activity enactment. Conclusions: Overall, this study supports the acceptability of the iStep-MS intervention and identified key areas that supported participants to be physically active. Trial registration number: ISRCTN15343862.</p