Co-Design of an Intervention to Increase the Participation in Leisure Activities Including Adolescents with Cerebral Palsy with GMFCS Levels IV and V: A Study Protocol

Rocío Palomo-Carrión; Caline Cristine De Araújo Ferreira Jesus; Camila Araújo Santos Santana; Raquel Lindquist; Roselene Alencar; Helena Romay-Barrero; Elena Contell-Gonzalo; Karolinne Souza Monteiro; Elena Pinero-Pinto; Egmar Longo

doi:10.3390/jcm12010182

Co-Design of an Intervention to Increase the Participation in Leisure Activities Including Adolescents with Cerebral Palsy with GMFCS Levels IV and V: A Study Protocol

J Clin Med. 2022 Dec 26;12(1):182. doi: 10.3390/jcm12010182.

Affiliations

¹ Faculty of Physiotherapy, University of Castilla-La Mancha, 45071 Toledo, Spain.
² Hemi Child-Research Unit, University of Castilla-La Mancha, 45071 Toledo, Spain.
³ Rehabilitation Sciences Graduate Program, Faculty of Health Science of Trairi, Federal University of Rio Grande do Norte, Santa Cruz 59078-900, Brazil.
⁴ Department of Physical Therapy, Federal University of São Carlos, São Carlos 13565-905, Brazil.
⁵ Department of Physical Therapy, Faculty of Health Science, Federal University of Rio Grande do Norte, Campus Universitário Lagoa Nova, Natal 59076-740, Brazil.
⁶ Corseford School, Capability Scotland, Renfrewshire PA10 2NT, UK.
⁷ Department of Physical Therapy, Faculty of Nursery, Physiotherapy and Podiatry, University of Seville, 41004 Seville, Spain.

Abstract

The participation of adolescents with cerebral palsy (CP) within the community is reduced compared to their peers and is a barrier to their socialization, self-determination and quality of life. Patient and Public Involvement (PPI) is a key strategy for successful interventions, especially when involvement of the stakeholders takes place at all stages of the research. Co-design can be crucial for success as researchers, patients with CP and their families work together to bring the necessary elements to the interventions to be designed. The objectives will be: (1) To co-design an intervention aimed at improving the participation of adolescents with significant motor disabilities within the community in partnership with adolescents with CP, families and rehabilitation professionals. (2) To assess the feasibility of the co-design process in partnership with interested parties. The study will be based on Participatory Action Research (PAR) and will be held in Spain and Brazil. In both countries, the study will be carried out remotely with nine adolescents aged 12 to 17 years with CP, Gross Motor Function Classification System (GMFCS) levels IV-V, their families and six health professionals (physiotherapists and occupational therapists). Different dialogue groups will be created to involve adolescents, families and health professionals to the research's project. To manage their involvement in the co-design process, the Involvement Matrix (IM) will be used, and according to the IM phases, four steps will be included in the research: (1) Preparation; (2) Co-design; (3) Analysis: results of the intervention protocol and the study's feasibility and (4) Dissemination of results. Partnering with the public to design an intervention to improve participation can bring better results compared to protocols designed only by health professionals. In addition, it will allow for knowing the needs of adolescents with CP in terms of participation within the community. The study will also explore which roles were chosen by all participants and how they felt while actively participating in the process of co-designing an intervention protocol and their own perspectives on the use of the involvement matrix.

Keywords: adolescents; cerebral palsy; co-design; intervention; involvement matrix; participation; public and patient involvement.

Grants and funding

Finance Code 001/Coordenação de Aperfeiçoamento de Pessoal de Nível Superior - (CAPES). Graduate Program in Rehabilitation Sciences. Federal University of Rio Grande do Norte-Faculty of Health Sciences of Trairi (UFRN-FACISA), Brazil.