Title: Involving parents in the co-delivery of goal directed intensive upper limb rehabilitation for children with congenital hemiplegia: a feasibility study of a co-designed intervention.
Funder: Health Education England

Abstract: BACKGROUNDParents are becoming increasingly involved in their child's rehabilitation5,18. There is robust evidence to support intensive approaches to upper limb rehabilitation which can make lasting changes to children's arm and hand function2-5.These approaches require high intensity and repetitive practice of child self-initiated movement2-5. Access to intensive rehabilitation is limited. Models of partnership working, involving parents in the co-delivery are being explored in the UK and internationally for children with hemiparesis14,15,19. Hemiparesis is the commonest form of cerebral palsy with a prevalence of 0.6 per 1000 live births1. Children with hemiparesis frequently present with functional limitations in arm and hand use, impacting independent participation in physical, social and emotional aspects of life into adulthood. The impact, benefit, burden and support needs of parents when involved in co-delivering rehabilitation has not been systematically explored. This study will use an Experience Based Co-Design (EBCD) approach to enable parents and therapists to co-design an intervention to support parents when engaged in delivering rehabilitation.RESEARCH QUESTIONIs it feasible to co-design and implement an intervention to support parents to co-deliver intensive rehabilitation for children (6 months to 10 years) with hemiparesis? Aim:To develop an intervention using co-production methods and conduct a preliminary evaluation in clinical practice. Objective: Using EBCD, develop an intervention toolkit to support parents in the delivery of intensive rehabilitation with their child with hemiparesis. Review feasibility and acceptability of toolkit implementation into clinical practice.METHODS Phase 1 -h; Systematic Review (months 0-8)To identify barriers and facilitators to parent involvement in paediatric rehabilitation for children with CP.Phase 2 -h; EBCD (months 8--18) Semi-structured interviews and non-participant observations to determine parent and therapist's experience of co-delivering rehabilitation. Parents and therapists will co-design an intervention toolkit for therapists to support parents in the co-delivery of intensive rehabilitation for children with hemiparesis.Phase 3 -h; Feasibility study (months 18-36) Feasibility and acceptability of implementation to routine practice. The co-produced intervention support package for parents will be implemented into routine practice. Observations, standardised parent report measures and parent interviews will enable evaluation of the feasibility and acceptability of the implementation.DISSEMINATIONPublications through peer reviewed journals, academic conference presentations and service user organisations. Findings will be shared widely through professional networks including co-producing and presenting with parents where possible. Results and progression criteria will inform a future control trial and economic evaluation prior to wider implementation. IMPACT This research will co-produce a toolkit to support therapists and parents, in co-delivery of rehabilitation for children with hemiparesis. Supporting parents appropriately can lead to greater satisfaction with healthcare reduced stress and improved well-being6. Strategies parents learn while partnering in rehabilitation can be implemented into their child's daily life potentially improving child outcomes. ? The intervention toolkit will have potential transferability across different NHS paediatric services. Models of parent involvement in rehabilitation may have health economic implications leading to potential changes NHS resource utilisation. This will be incorporated into future studies.

Lay abstract: BACKGROUND The demands on parents to co-rehabilitate their child with cerebral palsy are increasing. 110,000 children in England have cerebral palsy. The most common type means one side of their body is paralyzed or has limitations in movement and function; known as hemiparesis. This means the child has difficulty using their arm and hand throughout daily life. There is strong evidence to show that improvements can be made to the child's arm and hand function when the child self-initiates movement, together with highly repetitive practice. Such intensive rehabilitation approaches in the National Health Service (NHS) are limited. Evelina London Children's Hospital established 'Evelina REACH'; rehabilitation service partnering with parents and community therapists. Little is known about the impact that this rehabilitative role has on parents and whether they learn strategies that can then be used in their child's daily life. To improve outcomes for children with hemiparesis and their parents, therapists need to understand their needs and ways to help them. This study seeks to understand the impact on parents and co-design an intervention to support them. AIMSTo develop and evaluate an intervention to support parents when involved in rehabilitation with children who have hemiparesis. OBJECTIVES To understand current barriers and supports for parents and therapists involved in children's rehabilitation. To explore the impact on therapists and parents when they are providing rehabilitation to their child. To develop an intervention to support parents when providing rehabilitation. To test the feasibility and acceptability of implementing the intervention developed by parents and therapists.DESIGN AND METHODS Phase 1. Review current literature to identify barriers and supports for parents involved in children's rehabilitation. Phase 2. Interviews with parents of children with hemiparesis and therapists (n=12) recruited through 'Evelina REACH'. This will tell us about parent and therapist experiences when involved in rehabilitation. Video observations in clinic will show current ways therapists and parents are working together. Parents and therapists will together design an intervention for putting in to practice in phase 3. Phase 3. Use the intervention through 'Evelina REACH' with 30 families. We will ask parents of children with hemiparesis and therapists about their involvement in the rehabilitation through interviews, video observation and assessments. To find out if intervention is realistic and possible, we will also collect information on; eligibility, recruitment, retention, adherence, study resources and data collection. PATIENT AND PUBLIC INVOLVEMENT (PPI)Feedback from parents (n=13) who have participated in 'Evelina REACH' has led to this study. A reference group has been set-up and their advice included. Patient involvement is integral to this study as parents and therapists will design an intervention together. A PPI group will also be set-up to advise on aspects of the research study, written materials, data collection, management, parent involvement and sharing research findings. OUTPUTS Intervention to support parents. This will provide therapists with knowledge, tools and advice to enable parents when working together. DISSEMINATION Materials will be produced with parents. Results will be shared widely through networks of service users, healthcare professionals, therapist workshops, presentations at national and international conferences and through peer-reviewed journals. Findings will be shared with senior managers and leaders to influence policy changes. POTENTIAL BENEFITSThis research is intended to benefit parents by understanding their needs and developing an intervention to support them. Parent education and involvement in co-delivery may enhance opportunities for the child's rehabilitation beyond the programme. Leading to greater improvement in the child's ability to use their arm and hand in all aspects of their daily life; quality of movement, play, looking after themselves and school. This may have financial and service improvement benefits within the NHS.

Research activity codes: 7.1 INDIVIDUAL CARE NEEDS
Health categories: NEUROLOGICAL