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

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.

Implementation of the My Abilities First Tool: A qualitative study on the perceptions of professionals, caregivers, children, and adolescents with disabilities

“…These biases become more evident when one observes that the functional abilities of individuals with disabilities are often assessed only by professionals. Additionally, there is frequently limited collaboration between professionals and families, hindering the attainment of a more comprehensive and accurate view of the abilities of children and adolescents with disabilities in a wider range of situations and environments [ 8 – 12 ].…”

“…In recent years, studies indicate an increase in families seeking to express their needs for involvement in healthcare decision-making. Studies highlight this importance, as well as involving these families in information sharing [ 12 – 16 ]. In a study by Bamm and Rosenbaum (2008) [ 17 ], families considered access to information as paramount, while professionals deemed providing education essential to better promote family-centered care, thus offering better quality services for the health of children and youth with disabilities [ 17 ].…”