Better together: participatory action research for co-constructing an intervention to enhance leisure activities in non-ambulatory adolescents with cerebral palsy

Abstract

Background: Adolescents with cerebral palsy (CP) classified at levels IV and V of the gross motor function classification system (GMFCS) face significant restrictions in participating in leisure activities. Involving the public in the development of interventions is a recommended practice. Tools such as the Involvement Matrix (IM) can facilitate collaborative research. The aim of this study was to co-design an intervention to improve leisure activity participation in adolescents with CP at GMFCS levels IV and V, in collaboration with the adolescents, their families, and healthcare professionals.

Methods: This study employed a participatory action research (PAR) approach, involving five adolescents with CP at GMFCS levels IV and V, their mothers, three physiotherapists, and two occupational therapists. Different dialogue groups were formed to facilitate the co-creation of the intervention. The IM guided participant engagement, while the participation and environment measure-children and youth (PEM-CY) was used to assess the adolescents' community participation. Through the dialogue groups, discussions were conducted to identify barriers to participation and collaboratively design an intervention that reflected the preferences of the target audience.

Results: The "Leisure on Wheels" intervention was developed to address the participation barriers identified in the dialogue groups. The results focused on the development process, emphasizing collaborative discussions and adjustments to meet the target audience's needs. The intervention components were tailored to the participants' preferences. To ensure clarity and replicability, the intervention was described using the template for intervention description and replication (TIDieR) checklist. The goal attainment scaling (GAS) was used to define individualized objectives based on the participants' preferences and needs. Feedback from an external group, including two adolescents with CP and their mothers, validated the intervention's relevance and acceptability. The intervention was planned for a four-week period, including weekly 60-min in-person sessions at a selected leisure location and 20-min remote consultations to monitor progress and adjust strategies.

Conclusions: This study highlighted the perceived effectiveness of the co-design model and participatory approach, which facilitated the adaptation of the intervention to the specific needs of adolescents and their families, enhancing its relevance and acceptability.

Trial registration: Ethics Committee of the Federal University of Rio Grande do Norte/Trairi Health Sciences School (UFRN/FACISA) (Opinion Number: 51319321.1.0000.5568).

Keywords: Adolescents; Cerebral palsy; Co-design; Intervention development; Patient and public involvement; Young adults.

Fig. 1

- Involvement matrix

Fig. 2

- Roles of engagement in the research

Fig. 3

Roadmap of the co-design study involving adolescents CP, families, and healthcare professionals. The figure outlines two phases: (1) preparation and (2) co-design. The blue boxes highlight important points for understanding the study and the main questions addressed. The yellow boxes represent the sequence of events that occurred during the study, such as recruitment, meetings, and other key activities. The term "PEM-CY" refers to the "participation and environment measure for children and youth," used to assess community participation

Fig. 4

Participation meeting Jamboard with adolescents and families

Fig. 5

Participation meeting Jamboard with healthcare professionals

Fig. 6

Co-constructed intervention