Use of Involvement Matrix in Cerebral Palsy Into Spain and Brazil

NCT05214352 | Unknown

• 1 other identifier: Rpalomo02
• Study Type: observational
• Target: 24
• Locations: 1 country
• Sites: 1

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

Conditions

Public and Patient Involvement; Patient Participation; Family Research; Participation

Keywords

family; research project; co-design

Outcome Measures

Primary Outcomes (2)

• open questions and surveries

  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

  12 weeks

• The PEM-CY: Participation and Environment Measure - Children and Youth

  is a measure that evaluates participation in the home, at school, and in the community, alongside environmental factors within each of these settings.

  At baseline to know how is the participation in young people to increase it in the works groups.

Study Arms (1)

young population with cerebral palsy-Families-Therapist and researchers

The principal group is designed by all people who composed the research and who will work together in the intervention manual elaboration on the participation in the community.

Other: co-design in the intervention manual elaboration to increase the participation in the community

Interventions

co-design in the intervention manual elaboration to increase the participation in the community OTHER

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.

young population with cerebral palsy-Families-Therapist and researchers

Eligibility Criteria

• Age: 12 Years - 17 Years
• Sex: all
• Age Groups: Child (0-17)
• Sampling Method: Probability Sample

Study Population

The research will be carried out remotely (online) with 9 young people from 12 to 17 years old with cerebral palsy, GMFCS IV and V, their families and 6 healthcare professionals (physiotherapists and occupational therapists).

You may qualify if:

• 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.

You may not qualify if:

• young people with an inadequate cognitive level (CI \<70) to answer questions and collaborate, with other problems or diseases not associated with CP

Sponsors & Collaborators

• University of Castilla-La Mancha: lead

Study Sites (1)

University of Castilla-La Mancha

Toledo, 45071, Spain

RECRUITING

Related Publications (7)

• Mitchell SJ, Slowther AM, Coad J, Akhtar S, Hyde E, Khan D, Dale J. Ethics and patient and public involvement with children and young people. Arch Dis Child Educ Pract Ed. 2019 Aug;104(4):195-200. doi: 10.1136/archdischild-2017-313480. Epub 2018 Feb 9.

  PMID: 29440127 RESULT

• Alderson H, Brown R, Smart D, Lingam R, Dovey-Pearce G. 'You've come to children that are in care and given us the opportunity to get our voices heard': The journey of looked after children and researchers in developing a Patient and Public Involvement group. Health Expect. 2019 Aug;22(4):657-665. doi: 10.1111/hex.12904. Epub 2019 May 21.

  PMID: 31115138 RESULT

• Forsyth F, Saunders C, Elmer A, Badger S. 'A group of totally awesome people who do stuff' - a qualitative descriptive study of a children and young people's patient and public involvement endeavour. Res Involv Engagem. 2019 Mar 12;5:13. doi: 10.1186/s40900-019-0148-0. eCollection 2019.

  PMID: 30915233 RESULT

• Costello W, Dorris E. Laying the groundwork: Building relationships for public and patient involvement in pre-clinical paediatric research. Health Expect. 2020 Feb;23(1):96-105. doi: 10.1111/hex.12972. Epub 2019 Oct 18.

  PMID: 31625656 RESULT

• Boland L, Graham ID, Legare F, Lewis K, Jull J, Shephard A, Lawson ML, Davis A, Yameogo A, Stacey D. Barriers and facilitators of pediatric shared decision-making: a systematic review. Implement Sci. 2019 Jan 18;14(1):7. doi: 10.1186/s13012-018-0851-5.

  PMID: 30658670 RESULT

• Smits DW, van Meeteren K, Klem M, Alsem M, Ketelaar M. Designing a tool to support patient and public involvement in research projects: the Involvement Matrix. Res Involv Engagem. 2020 Jun 16;6:30. doi: 10.1186/s40900-020-00188-4. eCollection 2020.

  PMID: 32550002 RESULT

• van Schelven F, van der Meulen E, Kroeze N, Ketelaar M, Boeije H. Patient and public involvement of young people with a chronic condition: lessons learned and practical tips from a large participatory program. Res Involv Engagem. 2020 Sep 30;6:59. doi: 10.1186/s40900-020-00234-1. eCollection 2020.

  PMID: 33005440 RESULT

MeSH Terms

Conditions

Patient Participation

Condition Hierarchy (Ancestors)

Patient Acceptance of Health Care; Treatment Adherence and Compliance; Health Behavior; Behavior

Central Study Contacts

Rocío Palomo-Carrión, PhD

CONTACT

+34606417213; Rocio.Palomo@uclm.es

Study Design

• Study Type: observational
• Observational Model: OTHER
• Time Perspective: CROSS SECTIONAL
• Sponsor Type: OTHER
• Responsible Party: SPONSOR

Study Record Dates

• First Submitted: December 5, 2021
• First Posted: January 28, 2022
• Study Start: February 1, 2022
• Primary Completion: May 30, 2022
• Study Completion: September 30, 2022
• Last Updated: January 28, 2022

Record last verified: 2022-01

Data Sharing

• IPD Sharing: Will not share

Locations

ES (1)