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| ID | Type | Description | Link |
|---|---|---|---|
| CAAE 59793122.8.0000.5268 | Other Identifier | Research Ethics Committee |
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| Name | Class |
|---|---|
| Conselho Nacional de Desenvolvimento CientÃfico e Tecnológico | OTHER_GOV |
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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:
Participants will answer two of three questionnaires:
.The Pediatric Evaluation of Disability Inventory - PEDI.
The limitation in the execution of activities and tasks, as well as the restriction in the social participation of children considered atypical are considered biopsychosocial aspects of health according to the model of the International Classification of Disability and Health Functionality (ICF). The perception of the difficulties and limitations in the execution of the tasks, the barriers and facilitators of the environments and the participation and its restrictions, can be important to follow minimal or expressive improvements, indicate important changes in the environment and favor positive changes in the lives of children.
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| Label | Type | Description | Intervention Names |
|---|---|---|---|
| Caregivers | Caregivers will respond to two of the three questionnaires: PEM-CY or YC-PEM, and PEDI |
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| Name | Type | Description | Arm Group Labels | Other Names |
|---|---|---|---|---|
| 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). |
| Measure | Description | Time Frame |
|---|---|---|
| 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. |
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Inclusion Criteria:
Exclusion Criteria:
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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.
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| Name | Affiliation | Role |
|---|---|---|
| Elisa B Van Eyken, PhD | Instituto Federal de Educação, Ciência e Tecnologia do Rio de Janeiro | Principal Investigator |
| Facility | Status | City | State | ZIP | Country | Contacts |
|---|---|---|---|---|---|---|
| Campus Realengo do IFRJ | Rio de Janeiro | Rio de Janeiro | 21715--00 | Brazil |
| PubMed Identifier | Type | Citation | Retractions |
|---|---|---|---|
| 31313843 | Background | 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. | |
| 30294776 | Background |
| Label | URL |
|---|---|
| PEM-CY - Questionaire | View source |
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| Type | Includes Protocol | Includes SAP | Includes ICF | Document Label | Document Date | Document Uploaded Date | Document File Name |
|---|---|---|---|---|---|---|---|
| Prot_SAP | Yes | Yes | No | Study Protocol and Statistical Analysis Plan | Jul 30, 2023 | Sep 18, 2023 | Prot_SAP_000.pdf |
| ICF | No | No | Yes | Informed Consent Form | Jul 30, 2023 | Sep 18, 2023 | ICF_001.pdf |
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| ID | Term |
|---|---|
| D002658 | Developmental Disabilities |
| ID | Term |
|---|---|
| D065886 | Neurodevelopmental Disorders |
| D001523 | Mental Disorders |
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| ID | Term |
|---|---|
| D011795 | Surveys and Questionnaires |
| ID | Term |
|---|---|
| D003625 | Data Collection |
| D004812 | Epidemiologic Methods |
| D008919 | Investigative Techniques |
| D017531 | Health Care Evaluation Mechanisms |
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| 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 |
| 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. |
| 21981404 | 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. |
| 33099320 | 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. |
| 29498960 | 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. |
| 29574916 | 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. |
| 27333475 | 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. |
| 27833905 | 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. |
| 25547759 | Background | Lexell J, Brogardh C. The use of ICF in the neurorehabilitation process. NeuroRehabilitation. 2015;36(1):5-9. doi: 10.3233/NRE-141184. |
| 24754598 | 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. |
| YC-PEM - Questionaire | View source |
| D011787 | Quality of Health Care |
| D017530 | Health Care Quality, Access, and Evaluation |
| D011634 | Public Health |
| D004778 | Environment and Public Health |