Family Research, Participation, Patient Participation, Public and Patient Involvement
Conditions
Keywords
family, research project, co-design
Brief summary
Application of Involvement Matrix in young people with Cerebral Palsy (GMFCS levels IV and V) from 12 to 17 years old with the purpose of improving the participation of this group in community leisure activities
Detailed description
The Involvement Matrix is a tool, which was built with organizations of patients, patients, parents, educators, doctors, and researchers, and supports the conversation and discussion about roles and expectations, aiming at authentic and sustainable alliances in research. It includes five participation roles: Listener, Co-thinker, Advisor, Partner and Decision-maker in three main phases of the research project: Preparation, Execution, and Implementation. The Involvement Matrix aims to be a guide for the project leader or researcher to dialogue with patients (public). Using the Matrix, agreements are made about the roles that the patient wishes to acquire and how they are involved in each phase. In this way, the empty cells in the Matrix are filled with specific activities. Using the Involvement Matrix before and during the different phases of a project has the potential to help researchers and patients reach clear agreements about research and their participation. The tool can be used prospectively, to discuss the possible roles of patients in the different phases of the projects, and retrospectively to discuss whether the roles have been satisfactorily performed. It is known that some studies with PPI had children and young people with the most severe disabilities as active participants and with non-verbal communication, thus, the most effective ways to collaborate with this group should be developed and enhanced to encourage their involvement in research. Although periodicals on the PPI are increasing rapidly, a solid evidence base of the impact of the PPI on research is still lacking, as many publications relate to the PPI process in general and without addressing the real impact of the PPI on the research. In this sense, the goal of this project is to develop (co-production) an intervention program for young people with Cerebral Palsy (GMFCS levels IV and V) from 12 to 17 years old with the purpose of improving the participation of this group in community leisure activities and assess the viability of public involvement in the research project through the use of the Involvement Matrix .
Interventions
OTHERco-design in the intervention manual elaboration to increase the participation in the community
It will co-design an intervention manual between all participants (families, young people with cerebral palsy and therapists) and researchers, using the involvement matrix to increase the participation of young people in the community. Different focus grous will be created to work together and various online meetings, masterclass, workshops to increase the knowlodge in all groups.
Sponsors
University of Castilla-La Mancha
Study design
Observational model
OTHER
Time perspective
CROSS_SECTIONAL
Eligibility
Sex/Gender
ALL
Age
12 Years to 17 Years
Inclusion criteria
* young people diagnosed with Cerebral Palsy (CP) from 12 to 17 years old, levels IV-V within the Gross Motor Function Classification System (GMFCS) * preserved cognitive status * families willing to cooperate with the research, as well as the physiotherapists and occupational therapists that accept to participate in the study.
Exclusion criteria
* young people with an inadequate cognitive level (CI \<70) to answer questions and collaborate, with other problems or diseases not associated with CP * non-cooperative families, and physiotherapists and occupational therapists who do not agree to sign the informed consent form for inclusion in the study
Design outcomes
Primary
| Measure | Time frame | Description |
|---|---|---|
| open questions and surveries | 12 weeks | to obtain the experiences from young people with cerebral palsy, families and therapist. These questionnaires will be designed by patients and therapist to introduce the correct information |
| The PEM-CY: Participation and Environment Measure - Children and Youth | At baseline to know how is the participation in young people to increase it in the works groups. | is a measure that evaluates participation in the home, at school, and in the community, alongside environmental factors within each of these settings. |
Countries
Spain
Contacts
Primary ContactRocío Palomo-Carrión, PhD
Outcome results
None listed