Comparative study of home and community participation among children with and without cerebral palsy (original) (raw)
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Journal of pediatric rehabilitation medicine
Improving participation of children with cerebral palsy is an important outcome in the practice of pediatric rehabilitation. Current knowledge of how a child's interactions with various environments influence participation can affect care provision to children with cerebral palsy. The literature was searched using electronic databases and reference lists from 1991 to 2008. Studies included reports on one or more factors influencing a child's participation. Using the International Classification of Function, Disability, and Health (ICF) as a framework, factors that influence participation are summarized. . function, medical co-morbidities and resultant activity or functional limitations. Contextual factors include environmental and personal factor domains of the ICF.
2020
Summary / Cerebral palsy is a well-recognized, heterogeneous condition persisting through the lifespan. In many individuals with cerebral palsy, motor disorders are associated by other comorbidities, including disturbances of sensation, perception, cognition and communication, epilepsy, emotional, behavioural and secondary musculoskeletal problems. Children with cerebral palsy face various challenges that can manifest in different ways over the life course, such as reduced and less diverse participation in daily activities at home, school and in the community, when compared to peers. In the International Classification of Functioning, Disability, and Health (ICF), participation is defined as a person’s “involvement in life situations”, reflecting the interaction of the person, activity and environment. However, little is known on the participation of children with disabilities in developing countries with fewer resources, such as Serbia. This study aimed to examine the characteristics of community participation of children with cerebral palsy in comparison to their peers with typical development and the effect of the environment on this participation, from the perspective of parents. The results of our study confirmed that the overall participation of children with cerebral palsy in the community was lower in comparison to the participation of children with typical development. Children with cerebral palsy participated in fewer activities, less frequently and were involved to a lesser extent. Differences were also evident at the level of individual activity types. Higher frequency, greater involvement level and a broader variety of activities were the desired types of change, as reported by parents. Parents of children with cerebral palsy highlighted engaging in activities that were beneficial for functional, motor and health status of the child, that were involving social interaction and communication and those providing children with the opportunities to develop social skills. By comparing the structures of environmental factors, the results of our study indicated more barriers and fewer facilitators in the group of children with cerebral palsy. Additionally, the environment was overall less supportive, environmental factors were rated less often as helpful in the child’s participation, and community resources were less available and/or adequate. For most children with cerebral palsy, barriers included physical and cognitive demands of typical community-based activities, as well as the physical layout of community settings. On the other hand, the supports included attitudes and actions of other members of the community towards the child, relationships with peers and social demands of typical activities. A lack of more adequate services was confirmed. Functional limitations children with cerebral palsy (gross motor, fine manual and intellectual functioning) were associated with the lower involvement in community-based activities. Activities affected by functional limitations were unstructured and organized physical activities, getting together with other children, and to a lesser extent, community events, neighbourhood outings, overnight visits or trips and extracurricular classes and lessons. Children with cerebral palsy with more severe levels of intellectual disability were at increased risk of fewer supporting factors and collectively less support and help from the environment. New findings may aid the identification of families with a child with cerebral palsy who may need interventions to improve children's participation in the community environment. Key words: participation, disability studies, International Classification of Functioning, Disability and Health, disability, children with cerebral palsy, involvement, barriers, environment, community-based activities
Iranian Journal of Pediatrics, 2016
Background: Participation in daily activities during childhood is an important aspect for health and social development. Objectives: This study was designed to investigate the participation of children with cerebral palsy aged 8 to 14 years, and their normal peers. Patients and Methods: In this cross-sectional study, 30 children with cerebral palsy, and 30 normal children were selected via the non-probability convenience sampling. Their participation was evaluated with children's assessment of participation and enjoyment (CAPE) through interviews. Results: Significant differences were found between the means of the two groups regarding the diversity, intensity, overall participation (P = 0.000) and all types of the activities except the recreational activities. The children with cerebral palsy took part in the skill-based activities and overall activities individually compared to the normal peers. The children with cerebral palsy, in comparison with their normal peers, often performed most of the activities inside the house. The main effect of gender and the interaction between gender and groups were not statistically significant in any of the variables of the CAPE test. Conclusions: Physical disability can influence the children's daily activities and socialization. Understanding the participation of physically disabled children can help health care professionals in designing and introducing appropriate treatment according to their needs.
Archives of Physical Medicine and Rehabilitation, 2012
Objective-To evaluate how participation of children with cerebral palsy (CP) varied with their environment. Design-Home visits to children. Administration of Assessment of Life Habits and European Child Environment Questionnaires. Structural equation modeling of putative associations between specific domains of participation and environment, while allowing for severity of child's impairments and pain. Setting-European regions with population-based registries of children with CP. Participants-Children (n=1174) aged 8 to 12 years were randomly selected from 8 populationbased registries of children with CP in 6 European countries. Of these, 743 (63%) agreed to participate; 1 further region recruited 75 children from multiple sources. Thus, there were 818 children in the study. Interventions-Not applicable. Main Outcome Measure-Participation in life situations. Results-For the hypothesized associations, the models confirmed that higher participation was associated with better availability of environmental items. Higher participation in daily activities-mealtimes, health hygiene, personal care, and home life-was significantly associated with a better physical environment at home (P<.01). Mobility was associated with transport and physical environment in the community. Participation in social roles (responsibilities, relationships, recreation) was associated with attitudes of classmates and social support at home. School
Characteristics influencing participation of Australian children with cerebral palsy
Disability and Rehabilitation, 2009
Purpose. To investigate the extent to which selected individual, family and environmental variables were associated with participation of children who have cerebral palsy in activities outside school. Methods. Data were gathered through a population-based survey of 114 children born in 1994 or 1995 in Victoria, Australia. Participation was measured using the Children's Assessment of Participation and Enjoyment. Selected independent variables were classified as related to the child, family or environment. Linear regression analysis was used to identify variables associated with participation in informal (activities that require little planning) and formal (those with structure and leaders) activities. Results. Participation in informal activities tended to be greater in children who preferred informal activities and who had higher manual ability (adjusted R 2 ¼ 36.3%). Girls and those with better gross motor function also tended to participate in more activities. The explanatory power of the regression model for participation in formal activities was limited (adjusted R 2 ¼ 4.2%). Conclusion. Knowing a child's activity preferences is critical to intervention planning. Being exposed to a range of activities within supportive environments may provide the opportunity to develop preferences, especially in activities where children with cerebral palsy have reduced participation, such as in physical activities.
Participation of children with cerebral palsy is influenced by where they live
Developmental Medicine & Child Neurology, 2007
The study aimed to determine whether degree of participation of children with cerebral palsy (CP) is influenced by where they live, as predicted by the social model of disability. Ninetytwo per cent children with CP resident in Northern England and born 1991-1996 were entered into the study. Participation was measured by the Lifestyle Assessment Score and its six component domain scores. Regression analysis was used to investigate variations in participation. There were 443 children (265 male, 178 female; mean age 4 years 8 months [SD 1 year 1 month] at time of assessment) in the study. In the regression analysis the following factors remained significant with regard to level of participation: type of CP (167 with hemiplegia, and of those remaining 240 with bilateral spasticity); intellectual impairment (105 with IQ<50, 113 with IQ 50 to 70, and 225 with IQ>70); presence of seizures (115 with active epilepsy); walking disability (114 unable to walk, 81 restricted and needing aids, 186 restricted but unaided, 62 unrestricted); communication problems (61 no formal communication, 51 use alternative formal methods, 126 some delay or difficulty, 205 no communication problems). After adjustment for these factors, there were significant variations with regard to level of participation in the Lifestyle Assessment Score by district of residence. The magnitude of these variations in Lifestyle Assessment Score between districts is similar to that accounted for by severe intellectual impairment. Similar models were obtained for four of the six domain scores. For one of these four, restriction of social interaction, the significant variation between districts was minimally influenced by the underlying type of CP, walking ability, or presence of seizures. Higher levels of participation among children with CP are associated with residence in certain districts. This is not attributable to variations in case-mix or functional capacity of the children. Participation of children with disability is partly a product of their environment.
Environmental barriers to participation in children with cerebral palsy aged 5 to 12 years
International Journal Of Community Medicine And Public Health
Background: Cerebral palsy is a group of permanent disorders of development in movement and posture causing various limitations. India has a prevalence of 2.95 CP children per 1000 children. Participation is important for overall development. Participation is influenced by factors around the child and family. Environmental factors include social support, accessibility, accommodation, and availability of facilities. There is dearth of literature about what environmental barriers prevent individuals with cerebral palsy from attaining participation in Indian surroundings. Thus, the aim was to find the environmental barriers faced to participation. Methods: Parents of 30 children with CP from Pune participated in the study. Convenience sampling was used to onboard them. Ethical clearance, informed consent and assent were taken. They had to fill out the CHIEF questionnaire- Craig’s hospital inventory of environmental factors and the therapist determined the GMFCS and MACS level of the ch...
Journal of exercise therapy and rehabilitation, 2019
Purpose: This research study aimed to examine the relationship between participation and quality of life with impairment and environment (physical, social and attitudinal) aspects in children aged 2-18 years with cerebral palsy (CP) according to framework of International Classification of Functioning, Disability and Health. Methods: A population-based study of children with CP sampled from 9 different districts of metropolitan area in Ankara will participate. Children were visited in special education and rehabilitation centers and inclusive schools in Ankara and totally 450 children with CP and their parents will be included. The project has two stages: translation, adaptation, validity and reliability study of Life Habits Questionnaire (LIFE-H) and determination of quality of life and participation levels and familial status. In the second stage, beside the LIFE-H, Child Health Questionnaire Parent Form-50 (CHQ-PF 50),
Participation patterns of children with cerebral palsy: A caregiver’s perspective
African Journal of Disability
Background: Participation in activities of daily living (ADL), education, leisure and play in children living with cerebral palsy (CP) may be affected by various factors, as outlined in the International Classification of Functioning, Disability and Health Framework (ICF). The aim of this study was to describe the participation patterns of a group of these children.Objectives: This study aimed to describe participation patterns in ADL, education, leisure and play activities of children living with CP in Modimolle.Method: An exploratory-descriptive qualitative (EDQ) study design was used. A researcher-constructed bio-demographic data sheet and a semi-structured interview schedule were used to collect data from the primary caregivers of children (5–17 years) living with CP in Modimolle. Interviews were transcribed verbatim, translated from Sepedi to English and analysed using the content analysis approach and NVivo software.Results: The findings of this study indicated that children l...