Activities and social participation of children with atypical motor development

Actividades y participación social de niños con desarrollo motor atípico

RESUMO

A limitação em atividades e na participação social parece influenciar o desempenho nas tarefas. Este é um estudo transversal que utiliza o inventário de avaliação pediátrica de incapacidade (Pedi) e os questionários de medida de participação no ambiente (YC-PEM e PEM-CY) para conhecer a percepção dos responsáveis sobre a execução de atividades e participação social de crianças com desenvolvimento motor atípico em tratamento fisioterapêutico neurofuncional. Participaram 23 responsáveis de crianças de sete meses a seis anos =. Na avaliação de habilidades funcionais, nove crianças foram consideradas com atraso no autocuidado, 20 na mobilidade e sete na função social. Na assistência do cuidador, o atraso no desempenho foi percebido em 14 crianças em autocuidado, 17 para mobilidade e 15 para função social. Na participação em casa, a rotina de cuidados básicos foi a mais frequente, e a de tarefas domésticas a menos. Duas crianças frequentavam a pré-escola. Na comunidade, crianças que recebem pouca assistência do cuidador demonstram maior envolvimento nas atividades, e a maioria participou de atividades de passeio. A percepção dos responsáveis sobre a incapacidade sugere dificuldades na execução de atividades. A participação tem maior frequência em casa; na comunidade, é proporcional ao nível de independência, e a escola não é um ambiente de participação para a maioria.

Descritores:
Classificação Internacional de Funcionalidade, Incapacidade e Saúde; Criança; Desenvolvimento Infantil; Participação Social

ABSTRACT:

Limitations in activities and social participation seem to influence task performance. This cross-sectional study used the Pediatric Evaluation of Disability Inventory (PEDI) and the participation and environment questionnaires (YC-PEM and PEM-CY) to investigate guardians’ perceptions of the performance of activities and social participation of children with atypical motor development undergoing neurofunctional physical therapy. In total, 23 guardians of children aged from seven months to six years participated. In the assessment of functional skills, nine children exhibited delayed self-care, 20 had delayed mobility, and seven had delayed social function. Regarding caregiver assistance, delays in performance were observed in 14 children for self-care, 17 for mobility, and 15 for social function. Regarding participation at home, basic care routines were the most frequent activities, whereas household chores were the least. In total, two children attended preschool. In the community, children who received less caregiver assistance demonstrated greater involvement in activities, and most participated in outing activities. Guardians’ perceptions of disability suggest difficulties in task performance. Participation was most frequent at home; in the community, it was proportional to the level of independence, and for most children, school was not a participatory environment.

Keywords:
International Classification of Functioning, Disability and Health; Child; Child Development; Social Participation

RESUMEN

La limitación en las actividades y en la participación social parecen influir en el desempeño de las tareas. Se trata de un estudio transversal que utiliza el inventario de evaluación de la discapacidad pediátrica (PEDI) y los cuestionarios de medición de la participación en el ambiente (YC-PEM y PEM-CY) para conocer la percepción de los responsables de la ejecución de actividades y la participación social de los niños con desarrollo motor atípico en el tratamiento fisioterapéutico neurofuncional. Los participantes fueron 23 responsables de niños de 7 meses a 6 años de edad. En la evaluación de las habilidades funcionales, nueve niños se clasificaron como retrasados en el autocuidado, 20 en la movilidad y siete en la función social. En la asistencia al cuidador, el retraso en el desempeño se percibió en 14 niños en autocuidado, 17 en movilidad y 15 en función social. En la participación en el hogar, la rutina de cuidados básicos fue la más frecuente, y la rutina de tareas domésticas la menos frecuente. Dos niños asistían a la preescuela. En la comunidad, los niños que reciben poca asistencia de cuidadores demostraron una mayor participación en las actividades, y la mayoría participó en actividades de caminata. La percepción de los responsables de la discapacidad apunta dificultades en la realización de las actividades. La participación es más frecuente en el hogar; en la comunidad es proporcional al nivel de independencia; y la escuela no es un ambiente de participación para la mayoría.

Palabras clave:
Clasificación Internacional del Funcionamiento, de la Discapacidad y de la Salud; Niño; Desarrollo Infantil; Participación Social.

INTRODUCTION

The International Classification of Functioning, Disability and Health (ICF) defines activity as the execution of a task and participation as the frequency and engagement of the person in activities¹. From a biopsychosocial perspective, functioning is related to body structures and functions, activities, and social participation, depending on the health condition and contextual factors².

Children with atypical motor development have impairments that may limit task execution and restrict participation in daily activities, ultimately affecting their functioning. Motor development is considered atypical when, due to central nervous system alterations, it does not resemble that of most typically developing children of the same age and socioeconomic backgrounds³.

The environment influences functioning either as a facilitator or a barrier and may improve or hinder the child’s performance¹. Understanding caregivers’ perceptions regarding tasks and participation can support interventions aimed at promoting children’s health. This study is justified by adopting the ICF framework to move beyond organ and system deficiencies⁴, proposing the execution of activities and social participation with a focus on the potential for change⁵.

The objective was to investigate the guardians’ perceptions of task execution and social participation among children with atypical motor development undergoing neurofunctional physical therapy.

METHODOLOGY

This is a cross-sectional, observational, and analytical study on guardians’ perceptions regarding the execution of tasks and activities, as well as the social participation of their children with atypical motor development in three environments: home, school, and community.

Guardian selection and ethical considerations

A non-probability sample was used with the following inclusion criteria: guardians of children up to seven years of age with atypical motor development receiving physical therapy care at the School Clinic (SC) of an educational institution from October 2022 to June 2023. Cases involving care for other health conditions or patients without motor limitations were excluded. The study complied with the ethical standards of CNS Resolution No. 466/2012. The guardians were informed about the research, and the questionnaires were administered after they signed an informed consent form. To protect their identities, participants were identified by numbers.

Research protocol

The questionnaires were administered to the guardians through face-to-face interviews during the children’s physical therapy care sessions, across two encounters.

The Participation and Environment Measure - Children and Youth (PEM-CY), designed for individuals aged five to 17 years, and the Young Children’s Participation and Environment Measure (YC-PEM), for children up to five years old, assess participation across three environments: home, school, and community. The assessed participation items include daily activities such as personal care, household chores, play/technology use, and socialization with family members, schoolmates, and the community. Each participation item is evaluated across three dimensions: frequency (a seven-point scale ranging from Never=0 to One or more times a day=7), engagement (a five-point scale ranging from Minimally involved=1.0 to Very involved=5.0), and desire for change (Yes=1 and No=0). Higher frequencies indicate that the child participates more often in the activity. Higher means in the engagement domain denote greater involvement. A high percentage for desire for change suggests lower guardian satisfaction with the child’s participation level^6),(7.

The Pediatric Evaluation of Disability Inventory (PEDI), intended for children from six months to seven years old, evaluates performance in daily activities, the need for environmental modifications, and the level of caregiver assistance required^8-10. Part I assesses the child’s functional skills (capable or not capable) across self-care, mobility, and social function tasks; Part II measures the amount of assistance needed for these tasks; and Part III identifies the use of modifications (none, child-centered, rehabilitation, or extensive). Scores correspond to the sum of the items. In Part I, higher scores reflect higher perceived functioning. Part II scores range from 0 (total assistance required) to 5 (independence or minimal assistance). Part III is qualitative and identifies environmental modifications^9),(11.

Data analysis

Data were analyzed using Microsoft Excel Office 365. For the YC-PEM and PEM-CY, the percentage of participation in activities, the engagement mean, and the desire for change in participation were described per environment. The PEDI normative score indicates either delay (<30) or expected performance (30 to 70), as well as the necessary modifications for task execution.

RESULTS

The study included 23 guardians of children aged between seven months and six years (μ=24.3 months) with atypical motor development, comprising 22 mothers and one father. All participants answered the PEDI, one answered the PEM-CY, and 21 answered the YC-PEM. Unanswered questions were included in the calculations, with a low risk of underestimation. The sample featured varied clinical diagnoses: cerebral palsy (CP) (n=12), Down syndrome (n=4), myelomeningocele (n=2), congenital myopathy (n=1), autism spectrum disorder (n=1), bronchopulmonary dysplasia (n=1), Moebius syndrome (n=1), and Pierre Robin syndrome (n=1).

In PEDI Part I, nine children exhibited a delay in self-care, 20 in mobility, and seven in social function. In Part II, 14 children demonstrated a performance delay in self-care, 17 in mobility, and 15 in social function. In Part III, regarding self-care tasks, 18 children required some child-centered modification (diapers), two needed rehabilitation modifications (wheelchair and orthosis), and three required extensive modifications (feeding tube). In Part II, the scores of seven children (>14) indicated a reduced need for assistance, showing greater independence in activities.

Table 1
PEDI normative scores

	Part I			Part II
Guardian:	Self-care	Mobility	Social function	Self-care	Mobility	Social function
1	9.0	9.0	9.0	9.0	9.0	9.0
2	64.0	23.5	53.6	53.1	32.8	39.2
3	9.0	9.0	9.0	9.0	9.0	9.0
4	41.0	9.0	30.6	39.9	9.0	27.0
5	44.8	9.0	52.7	34.1	9.0	37.0
6	27.4	16.5	30.6	29.7	9.0	9.0
7	9.0	9.0	9.0	9.0	9.0	9.0
8	45.5	32.3	43.7	27.8	9.0	25.0
9	36.2	23.5	48.7	37.2	32.8	39.2
10	16.0	9.0	49.7	9.0	9.0	13.3
11	43.3	27.4	45.6	45.2	32.8	39.2
12	22.6	9.0	9.0	9.0	9.0	9.0
14	9.0	9.0	9.0	21.4	9.0	14.8
15	9.0	9.0	9.0	9.0	9.0	9.0
16	37.0	31.4	44.4	29.7	9.0	27.0
17	37.0	13.6	33.8	34.1	9.0	9.0
18	32.6	9.0	49.1	16.6	9.0	9.0
19	34.6	9.0	39.9	16.6	14.9	43.2
20	52.6	27.4	51.4	37.2	41.0	66.3
21	39.9	27.4	37.8	37.2	32.8	39.2
22	55.5	30.5	48.7	37.2	41.0	39.2
23	41.0	20.5	33.8	29.7	9.0	18.8
24	9.0	9.0	9.0	9.0	9.0	9.0

• Note: Scores below 30 indicate delay; scores from 30 to 70 indicate expected development.

In the home environment, participation frequency varied, averaging 65%, with two children participating daily across all activities (100%). Basic care routines and playtime were the most frequent activities (daily) for 20 children, whereas household chores had the lowest frequency (never) for the majority. The children’s engagement levels also varied, averaging 3.8, in which values closer to 5.0 denote greater involvement. Regarding the desire for change in the child’s participation at home, two caregivers were satisfied (0%) and one was completely dissatisfied (100%). The average satisfaction rate was 57%.

Table 2
Home environment results, YC-PEM and PEM-CY

Guardian:	Participation frequency*	Engagement**	Desire for change***
1	45%	3.3	77%
2	62%	3.3	85%
3	54%	3.6	100%
4	54%	3.9	92%
5	62%	4.0	85%
6	38%	2.6	85%
7	85%	4.1	69%
8	100%	4.4	15%
9	69%	4.8	31%
10	100%	4.7	23%
11	62%	2.0	23%
12	54%	2.7	85%
14	77%	3.2	62%
15	60%	4.7	90%
16	62%	4.3	23%
17	69%	4.3	0%
18	85%	4.3	38%
19	77%	3.6	62%
20	38%	4.5	0%
21	54%	4.3	38%
22	62%	3.0	69%
23	69%	4.3	92%
Mean of results	65%	3.8	57%

• *Participation frequency: A high percentage indicates greater participation in activities.
• **Engagement: A mean close to 5.0 indicates greater involvement in activities.
• ***Desire for change: A high percentage suggests lower caregiver satisfaction with participation.

In total, three children attended school, daycare, or preschool, exhibiting daily participation in classroom activities and socialization with friends, alongside higher engagement in group activities and outings. Two children achieved 100% participation (mean 87%), and there was one maximum engagement score of 5.0 (mean of 3.7). The desire for change was 100% for two of these families.

Table 3
School environment results, YC-PEM and PEM-CY

Guardian:	Participation frequency*	Engagement**	Desire for change***
7	100%	2.3	100%
10	100%	5.0	67%
15	60%	3.7	100%
Mean of results	87%	3.7	89%

• *Participation frequency: A high percentage indicates greater participation in activities.
• **Engagement: A mean close to 5.0 indicates greater involvement in activities.
• ***Desire for change: A high percentage suggests lower caregiver satisfaction with participation.

Community participation frequency averaged 52%, with a strong engagement index of 3.9. Based on the YC-PEM, no child participated in classes or organized physical activities; however, the majority engaged in outings for appointments such as haircuts, medical consultations, and therapies. According to the PEM-CY, the children participated once a month in unstructured physical activity and gatherings with other children. The desire for change in community participation varied among caregivers, averaging 59%.

Table 4
Community environment results, YC-PEM and PEM-CY

Guardian:	Participation frequency*	Engagement**	Desire for change***
1	50%	3.3	73%
2	50%	3.3	91%
3	75%	3.6	91%
4	42%	3.9	100%
5	33%	4.0	91%
6	25%	2.6	55%
7	58%	3.6	55%
8	67%	4.8	36%
9	42%	5.0	100%
10	58%	4.7	64%
11	50%	3.0	0%
12	33%	2.5	91%
14	67%	4.3	18%
15	60%	4.7	70%
16	58%	4.1	55%
17	75%	3.7	9%
18	42%	4.6	45%
19	58%	4.3	36%
20	67%	5.0	0%
21	33%	2.0	73%
22	42%	3.8	55%
23	50%	4.3	100%
Mean of results	52%	3.9	59%

• *Participation frequency: A high percentage indicates greater participation in activities.
• **Engagement: A mean close to 5.0 indicates greater involvement in activities.
• ***Desire for change: A high percentage suggests lower caregiver satisfaction with participation.

DISCUSSION

Skill development arises from social interaction, engagement with the physical environment, family integration, peer interactions, play, and schooling¹². The family represents the child’s first socialization contact and plays a crucial role in their development¹³. The above-average desire for change across all investigated environments suggests that diversifying experiences is closely tied to overall development.

Regarding the family environment participation of children with CP, Kalleson et al.¹⁴ emphasized that it depends heavily on their context and level of independence. Daily life and the home environment are critical for the well-being of children who desire, appreciate, and express interest in family activities. Therefore, it is important that activities are diverse, feasible, and planned according to the children’s interests.

Focusing on participation-centered planning, Bosak et al.⁴ used an electronic facilitating tool to leverage families’ knowledge about their children. This approach yielded favorable outcomes by creating strategies that spanned multiple environments, demonstrating the profound impact of supporting participation across various settings.

Parents perceived low involvement in community activities, particularly regarding physical activities, extracurricular classes, and group events. According to Feitosa et al.¹⁵, engaging in physical activities fosters the acquisition of new skills and promotes inclusion. Their study followed children and adolescents participating in adapted sports and noted significant improvements in transfers, mobility, global and upper extremity function, and overall quality of life.

In the present study¹⁵, difficulties in executing self-care tasks were anticipated, alongside high participation frequencies and a clear need for assistance, yet no participation in household chores was observed. Similar findings in studies focusing on children with CP^16),(17 reported good performance and participation in self-care, albeit with difficulties¹⁶, often requiring partial caregiver assistance. Less than half of the children participated in household chores¹⁷. It is understood that these children require some degree of assistance and that household chores may simply lack appeal for them.

When examining the relationship between the need for assistance and participation in community activities¹⁶, six children who required less caregiver assistance exhibited an engagement mean above average (3.9 out of 5.0). This suggests that engagement is closely linked to independence. Consequently, families should be encouraged to adopt practices that facilitate the child’s autonomy-incorporating assistive technologies if necessary-to better support inclusion and broader participation.

Regarding school participation, represented by only three children in this cohort, the low rate may be attributed to the fact that most participants required environmental modifications and assistance to perform tasks. Reis and Vasconcelos¹⁸ investigated the use of assistive technology tailored with appropriate resources to enhance learning, inclusion, and participation for atypical children in both school and leisure settings, utilizing tools such as specialized accessibility software and hardware adaptations.

The limitations of this study include the small sample size, uncertainties regarding the exact nature of participation in certain activities, the use of convenience sampling, the diverse clinical diagnoses among the children, and the lack of a detailed analysis concerning specific environmental facilitators and barriers.

FINAL CONSIDERATIONS

Based on the guardians’ perceptions, the home is the environment with the highest participation frequency and the lowest desire for change. For nearly 90% of the children, the school does not serve as a participatory environment, a factor that could negatively impact their development. Community participation is noticeably higher among children who require less caregiver assistance to perform daily activities. These findings underscore the pressing need for interventions rooted in a biopsychosocial perspective of functioning.

Data Availability Statement:

All Data Supporting The Results Of This Study Are Available Within The Body Of The Article.

REFERENCES

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• ¹⁷ Africa LE, Human A, Tshabalala MD. Participation patterns of children with cerebral palsy: a caregiver’s perspective. Afr J Disabil. 2023;12:1058. doi: 10.4102/ajod.v12i0.1058
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• ¹⁸ Reis AA, Vasconcelos CA. TIC e as tecnologias assistivas. Devir Educ. 2024;8(1):e-802. doi: 10.30905/rde.v8i1.802
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• Financing source:
  Federal Institute of Rio de Janeiro (IFRJ), Brazil; National Council for Scientific and Technological Development (CNPq), Brazil
• Approved by the Research Ethics Committee:
  CEP 59793122.8.0000.5268. Brazilian Registry of Clinical Trials (ReBEC) number: RBR-4ttmrg6.
• 4
  Study conducted at the School Clinic of the Realengo Campus of the Instituto Federal do Rio de Janeiro (IFRJ) - Rio de Janeiro (RJ),

Edited by

• Responsible editor:
  Sônia LP Pacheco de Toledo

Publication Dates

• Publication in this collection
  22 June 2026
• Date of issue
  2026

History

• Received
  25 Oct 2023
• Accepted
  20 Mar 2024