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.

BACKGROUND Parents 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 QUESTION Is 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 - Systematic Review (months 0-8) To identify barriers and facilitators to parent involvement in paediatric rehabilitation for children with CP.

Phase 2 - 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 - 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.

DISSEMINATION Publications 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.