Children's Activities and Social Participation

NCT06876025 | Completed

• 2 other identifiers: 559CAAE 59793122.8.0000.5268
• Study Type: observational
• Target: 30
• Locations: 1 country
• Sites: 1

Brief Summary

The goal of this observational study is to learn the perception of caregivers about the limitations of activities, and the restriction in the social participation of children who are in Neurofunctional physiotherapy. The main questions it aims to answer are:

• What is the ability to perform tasks, and
• how is the social participation of children with atypical motor development? Participants will answer two of three questionnaires:
• The Participation and Environment Measure - Children and Youth or the Young Children's Participation and Environment Measure, depending on the age of their child .The Pediatric Evaluation of Disability Inventory - PEDI.

Conditions

Child Development Disorder

Keywords

ICF; Child development; Social participation; Child

Outcome Measures

Primary Outcomes (5)

• Perception of caregivers/guardians of children with neuromotor disabilities regarding participation in three sections: home, school, and community.

  Evaluated by PEM-CY and YC-PEM, each item on participation is evaluated in three dimensions: frequency (seven-point scale), involvement (five-point scale) and desire for change (scores from zero to 100%). The environment, in turn, is evaluated by its characteristics, as well as by the availability of services and resources (scores from zero to 100%).

  4 months

• Perception of caregivers/guardians of children with neuromotor disabilities regarding environmental factors that may be barriers or facilitators in three sections: home, school, and community.

  Evaluated by PEM-CY and YC-PEM, each item on participation is evaluated in three dimensions: frequency (seven-point scale), involvement (five-point scale) and desire for change (scores from zero to 100%). The environment, in turn, is evaluated by its characteristics, as well as by the availability of services and resources (scores from zero to 100%).

  4 months

• Perception of caregivers/guardians of children with neuromotor disabilities about the child's performance in daily activities

  Evaluated by PEDI, the score of Part I is the sum of the items scored with 1, that is, items that represent the ability to perform the activity. In Part II, each item can be scored between 0 and 5 points. Receives 5 the item in which the child performs the task independently and 0 when it needs full assistance. Scores 4 (supervision), 3 (minimum assistance), 2 (moderate assistance) and 1 (maximum assistance) represent the amount of help the child receives in the activities. These points are also added. Part 3 is qualitative.

  4 months

• Perception of caregivers/guardians of children with neuromotor disabilities about the child's mobility and the need for caregiver help

  Evaluated by PEDI, the score of Part I is the sum of the items scored with 1, that is, items that represent the ability to perform the activity. In Part II, each item can be scored between 0 and 5 points. Receives 5 the item in which the child performs the task independently and 0 when it needs full assistance. Scores 4 (supervision), 3 (minimum assistance), 2 (moderate assistance) and 1 (maximum assistance) represent the amount of help the child receives in the activities. These points are also added. Part 3 is qualitative.

  4 months

• Perception of caregivers/guardians of children with neuromotor disabilities about the child's need for changes in the environment and in the child

  Evaluated by PEDI, the score of Part I is the sum of the items scored with 1, that is, items that represent the ability to perform the activity. In Part II, each item can be scored between 0 and 5 points. Receives 5 the item in which the child performs the task independently and 0 when it needs full assistance. Scores 4 (supervision), 3 (minimum assistance), 2 (moderate assistance) and 1 (maximum assistance) represent the amount of help the child receives in the activities. These points are also added. Part 3 is qualitative.

  4 months

Study Arms (1)

Caregivers

Caregivers will respond to two of the three questionnaires: PEM-CY or YC-PEM, and PEDI

Other: questionnaires

Interventions

questionnaires OTHER

Application of the questionnaires Measure of Participation and Environment - Children and Youth, (PEM-CY), or Measure of Participation and the environment - young children (YC-PEM), and the Pediatric Disability Assessment Inventory (PEDI).

Caregivers

Eligibility Criteria

• Age: 18 Years - 70 Years
• Sex: all
• Healthy Volunteers: No
• Age Groups: Adult (18-64), Older Adult (65+)
• Sampling Method: Non-Probability Sample

Study Population

Legal guardians of children from 0 to 11 years and 11 months of age with clinical diagnosis of nervous system health conditions with motor limitations.

You may qualify if:

• Legal guardians of children aged up to 11 years and 11 months with motor disability
• Most be in Physio-therapeutic care at the School Clinic on the Realengo campus of the Federal Institute of Education, Science and Technology of Rio de Janeiro.

You may not qualify if:

• Guardians of children with a health condition associated with the Nervous System without motor limitations
• Other health conditions.

Sponsors & Collaborators

• Federal Institute of Rio de Janeiro: lead
• Conselho Nacional de Desenvolvimento Científico e Tecnológico: collaborator

Study Sites (1)

Campus Realengo do IFRJ

Rio de Janeiro, Rio de Janeiro, 21715--00, Brazil

Location

Related Publications (10)

• Bosak DL, Jarvis JM, Khetani MA. Caregiver creation of participation-focused care plans using Participation and Environment Measure Plus (PEM+), an electronic health tool for family-centred care. Child Care Health Dev. 2019 Nov;45(6):791-798. doi: 10.1111/cch.12709. Epub 2019 Jul 30.

  PMID: 31313843 BACKGROUND

• Burgess A, Boyd RN, Ziviani J, Ware RS, Sakzewski L. Self-care and manual ability in preschool children with cerebral palsy: a longitudinal study. Dev Med Child Neurol. 2019 May;61(5):570-578. doi: 10.1111/dmcn.14049. Epub 2018 Oct 7.

  PMID: 30294776 BACKGROUND

• Coster W, Law M, Bedell G, Khetani M, Cousins M, Teplicky R. Development of the participation and environment measure for children and youth: conceptual basis. Disabil Rehabil. 2012;34(3):238-46. doi: 10.3109/09638288.2011.603017.

  PMID: 21981404 BACKGROUND

• Krieger B, Schulze C, Boyd J, Amann R, Piskur B, Beurskens A, Teplicky R, Moser A. Cross-cultural adaptation of the Participation and Environment Measure for Children and Youth (PEM-CY) into German: a qualitative study in three countries. BMC Pediatr. 2020 Oct 24;20(1):492. doi: 10.1186/s12887-020-02343-y.

  PMID: 33099320 BACKGROUND

• Thompson SV, Cech DJ, Cahill SM, Krzak JJ. Linking the Pediatric Evaluation of Disability Inventory-Computer Adaptive Test (PEDI-CAT) to the International Classification of Function. Pediatr Phys Ther. 2018 Apr;30(2):113-118. doi: 10.1097/PEP.0000000000000483.

  PMID: 29498960 BACKGROUND

• Khetani MA, Albrecht EC, Jarvis JM, Pogorzelski D, Cheng E, Choong K. Determinants of change in home participation among critically ill children. Dev Med Child Neurol. 2018 Aug;60(8):793-800. doi: 10.1111/dmcn.13731. Epub 2018 Mar 25.

  PMID: 29574916 BACKGROUND

• Mancini MC, Coster WJ, Amaral MF, Avelar BS, Freitas R, Sampaio RF. New version of the Pediatric Evaluation of Disability Inventory (PEDI-CAT): translation, cultural adaptation to Brazil and analyses of psychometric properties. Braz J Phys Ther. 2016 Nov-Dec;20(6):561-570. doi: 10.1590/bjpt-rbf.2014.0166. Epub 2016 Jun 16.

  PMID: 27333475 BACKGROUND

• Miller AR, Rosenbaum P. Perspectives on "Disease" and "Disability" in Child Health: The Case of Childhood Neurodisability. Front Public Health. 2016 Oct 26;4:226. doi: 10.3389/fpubh.2016.00226. eCollection 2016.

  PMID: 27833905 BACKGROUND

• Lexell J, Brogardh C. The use of ICF in the neurorehabilitation process. NeuroRehabilitation. 2015;36(1):5-9. doi: 10.3233/NRE-141184.

  PMID: 25547759 BACKGROUND

• Bornbaum CC, Day AM, Izaryk K, Morrison SJ, Ravenek MJ, Sleeth LE, Skarakis-Doyle E. Exploring use of the ICF in health education. Disabil Rehabil. 2015;37(2):179-86. doi: 10.3109/09638288.2014.910558. Epub 2014 Apr 22.

  PMID: 24754598 BACKGROUND

Related Links

• PEM-CY - Questionaire
• YC-PEM - Questionaire

MeSH Terms

Conditions

Developmental Disabilities

Interventions

Surveys and Questionnaires

Condition Hierarchy (Ancestors)

Neurodevelopmental Disorders; Mental Disorders

Intervention Hierarchy (Ancestors)

Data Collection; Epidemiologic Methods; Investigative Techniques; Health Care Evaluation Mechanisms; Quality of Health Care; Health Care Quality, Access, and Evaluation; Public Health; Environment and Public Health

Study Officials

• Elisa B Van Eyken, PhD

  Instituto Federal de Educação, Ciência e Tecnologia do Rio de Janeiro

  PRINCIPAL INVESTIGATOR

Study Design

• Study Type: observational
• Observational Model: COHORT
• Time Perspective: CROSS SECTIONAL
• Sponsor Type: OTHER
• Responsible Party: PRINCIPAL INVESTIGATOR
• PI Title: PhD Professor

Study Record Dates

• First Submitted: June 6, 2023
• First Posted: March 14, 2025
• Study Start: October 7, 2022
• Primary Completion: September 25, 2023
• Study Completion: November 30, 2023
• Last Updated: March 14, 2025

Record last verified: 2025-03

Locations

BR (1)