Co-designing complex therapy interventions with parents as partners in the care of children with cerebral palsy: An Experience-based Co-design study in England

TY - JOUR

T1 - Co-designing complex therapy interventions with parents as partners in the care of children with cerebral palsy

T2 - An Experience-based Co-design study in England

AU - Massey, Jill

AU - Tsianakas, Vicki

AU - Gordon, Anne L

AU - Sadler, Natalie

AU - Robert, Glenn

N1 - Publisher Copyright: © 2024 The Authors

PY - 2024/8

Y1 - 2024/8

N2 - Background Parents of children with hemiplegic cerebral palsy are increasingly involved in therapy intervention delivery. Enhancing the ways that parents are supported in delivery is key to optimising outcomes. This study aimed to refine an existing programme in England to better support parents partnering in their child’s intervention delivery. Methods and procedures Experience-based Co-design (EBCD) fostered collaboration between parents and therapists to identify shared improvement priorities and develop solutions. The study included eighteen interviews and sixteen co-design meetings involving twenty parents and eight therapists in total. Intervention development followed the MRC Framework for developing and evaluating complex interventions. Outcomes and results Themes from parent and therapist interviews informed priority setting for the co-design work. Three key shared priorities emerged a) accessing rehabilitation; b) fostering partnership and c) parent learning. Aligned with these priorities, three mixed parent and therapist co-design teams produced a) a parent booklet; an education outline for healthcare professionals; b) partnership principles; adaptations to intervention logbooks c) an online parent education session. Conclusions and implications Engaging parents and therapists in a structured co-design process using EBCD yielded innovative interventions supporting parents in delivering therapy for children with hemiplegia. This collaborative approach is anticipated to enhance programme implementation and effectiveness.

AB - Background Parents of children with hemiplegic cerebral palsy are increasingly involved in therapy intervention delivery. Enhancing the ways that parents are supported in delivery is key to optimising outcomes. This study aimed to refine an existing programme in England to better support parents partnering in their child’s intervention delivery. Methods and procedures Experience-based Co-design (EBCD) fostered collaboration between parents and therapists to identify shared improvement priorities and develop solutions. The study included eighteen interviews and sixteen co-design meetings involving twenty parents and eight therapists in total. Intervention development followed the MRC Framework for developing and evaluating complex interventions. Outcomes and results Themes from parent and therapist interviews informed priority setting for the co-design work. Three key shared priorities emerged a) accessing rehabilitation; b) fostering partnership and c) parent learning. Aligned with these priorities, three mixed parent and therapist co-design teams produced a) a parent booklet; an education outline for healthcare professionals; b) partnership principles; adaptations to intervention logbooks c) an online parent education session. Conclusions and implications Engaging parents and therapists in a structured co-design process using EBCD yielded innovative interventions supporting parents in delivering therapy for children with hemiplegia. This collaborative approach is anticipated to enhance programme implementation and effectiveness.

KW - Cerebral palsy

KW - Paediatrics

KW - Experience-based Co-design

KW - Parents

KW - Intervention

KW - Rehabilitation

UR - https://www.scopus.com/pages/publications/85196830775

U2 - 10.1016/j.ridd.2024.104793

DO - 10.1016/j.ridd.2024.104793

M3 - Article

SN - 0891-4222

VL - 151

JO - Research in Developmental Disabilities

JF - Research in Developmental Disabilities

M1 - 104793

ER -