Participation patterns of children with cerebral palsy: A caregiver’s perspective (original) (raw)
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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),
Activities and participation of children with cerebral palsy: parent perspectives
Disability and rehabilitation, 2015
Purpose: To explore parents' views of the activities and participation of children with cerebral palsy (CP) with a range of communicative abilities and the factors (personal and environmental) that influenced these. Methods: Thirteen parents of children with CP aged 4-9 years participated in semi-structured individual interviews. Interviews were recorded, transcribed and analysed thematically. Identified codes and themes were mapped to the domains of the International Classification of Functioning, Disability and Health - Children and Youth Version (ICF-CY). Results: Parents' responses reflected all ICF-CY domains comprising activity, participation and environmental factors. Codes were primarily mapped to the domains learning and applying knowledge, communication, mobility and interpersonal interactions and relationships. Key barriers identified included aspects of parents' own interactions with their child (e.g. not offering choices), unfamiliar people and settings, neg...
Effect Of Environment Factors On Participation Of Children With Cerebral Palsy – Literature Review
2018
Introduction: "Developmental Disabilities" is one of the commonest conditions in India due to brain injury in the earlier stage of life. (1) (2). In 1980s, Cerebral Palsy was described William Little, and it is one among the commonest conditions in developmental disabilities (2). Cerebral Palsy prevalence rate ranges from 1.5 to 2.5 per 1000 (1). Cerebral palsy is the chronic disability and makes postural and tonal issues in children due to nonprogressive brain lesion. This lesion may occur perinatal, natal or postal period and it often results with cognitive, motor, sensory, communicative, and behavioural disorders as well as epilepsy is common co-morbid issues which all leads to limitation of functional activities, restricted social participation (3). Based on biopsychosocial model (ICF frame work), cerebral palsy makes impact on individual"s body structure and functioning, activities and participation, these makes participatory restriction and activity limitation (4) (5). Many factors like physical capacity, environmental factors are commonly determine individual"s functional abilities (6). In many studies, it is highlighted that environmental factors make much impact of participation level and functional ability (7). Along with physical disabilities, if there are any other Health conditions, it limits their participation level and independency level of their ADL skills (6) (7) (8). Further to these, it also affects their quality of life and self-esteem (6). The severity of Cerebral Palsy obstructs children to utilise their functional capacity at different environments. Afsoon et al mentioned that normal children participation level was comparatively higher than cerebral palsy children participation, at the same time, in adapted environment their participation level were greater than normal peers (9). Studies suggested that customised environment and contest facilitates independency level, comprising personal factors and environmental factors (4) (5). According to ICF classification, Participation as "a person"s involvement in life situations" (10) (11) (12), is also considered as an important outcome of rehabilitation interventions and as a human right (10). According to OTPF, Participation areas are classified as: Activity Daily of Living (ADL), Instrumental Activity Daily of Living (IADL), work, play, leisure, education, rest/sleep/ social participation (13). Based on conceptual model of leisure, physical, social, attitudinal and institutional based environments are the key factors of determining children"s participation level (10). In some studies, to emphasizing the importance of participation, authors mentioned participation as social participation (11). Existing evidences show that participation at various contexts facilitates cognitive skills, peer group interaction, working capacity, quality of life, self-confidence, sense of competence, development, and social interaction and minimize emotional and behavioural issues. In addition to these, it facilitates health status and weight reduction for children and adults (9) (10) (11) (15). Due to environmental barriers for persons with disabilities, their level participation is comparatively lesser than normal population. Hence, their low level physical activity or inactiveness leads to secondary deformities and being a hindrance for their participation (14). Physical inactivity can lead to increased body weight, depression and other medical complications among persons with disabilities (15). Studies demonstrate that intrinsic factors (e.g., age and gender) and extrinsic factors (family situation, culture, and the living place) can have impact on the children"s level of Participation (9). Persons with disabilities experience many barriers to engage in regular physical activity especially physical barriers and attitudinal barriers. There are several studies focused on finding barriers and facilitators for persons with disabilities in regarding their participation level. There results highlighted that transportation and physical environment were the major barriers (15). Based on ICF frame work, environmental factors were organized based on five environmental domains of the ICF: Natural Environment (e.g. residency, climate, landforms) Products and Technology (e.g. accessibility of buildings) Support and relationships (e.g. parental involvement) Attitudes (e.g. perception towards disability) Services, Systems and Policies (e.g. community programs) Usually, landforms and climates and accessibility of buildings are merged as a single component for assessment (10) (7).
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.
Pediatric Physical Therapy, 2018
Purpose: To investigate contextual factors that were facilitators and barriers to performing activity and participation for children with cerebral palsy from the caregivers' perspective. Methods: Qualitative in-depth interview with primary caregivers of children with cerebral palsy aged 4 to 12 years was conducted in the metropolitan area of Thailand. Semistructured questions related to environmental and personal factors were recorded. Interviews were transcribed verbatim and analyzed for main themes on the basis of the International Classification of Functioning, Disability, and Health-Children and Youth Version (ICF-CY) classification. Results: Twenty-seven caregivers participated. Facilitators were appropriateness of assistive devices, support and acceptance from family, friends, and society, health services, willingness, and self-acceptance. Barriers were inappropriate design and facilities, overprotection of family, nonacceptance from family, friends, and society, inconvenient transportation, financial problems, limited health services, limited access to education, frustration, and being an introvert. Conclusions: Contextual factors that can be facilitators and barriers to perform activities and participation should be considered for improving lives of children with cerebral palsy.
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.
2018
Introduction: Children with Cerebral Palsy (CP) like the normal peers have the right to participate in life activities, so we aimed to study and compare the participation of Iranian 6-12 years old children with CP with the participation of their normally developing peers. Materials and Methods: This was a cross-sectional study in which the parents of 274 children with CP and the parents of 274 of normal children completed the Children Participation Assessment Scale Parent- version. For data analysis, the Independent t test was performed in SPSS version 21. Results: The mean age of children with CP and normal children were respectively 9.64 and 9.45 years. The results indicate a significant difference between the two groups in life activities participations (P<0.05). Conclusion: Participation of Iranian children with CP in life activities (activities of daily living, instrumental activities of daily living, play, leisure, social participation, education, and sleep/ rest) are lower than those normal peers, so the occupational therapists should pay attention to this and try to promote the participation of children with CP.
2019
Background Cerebral Palsy (CP) is a group of permanent disorders of movement and posture, attributed to non-progressive disturbance that occurred in the developing fetal or infant brain. The condition results in long term disability in carrying out activities of daily living (ADL). Thus, it most times required active participation of the caregivers of the children affected in their rehabilitation. The aim of the study is to explore the facilitators and barriers of active participation of caregivers in the rehabilitation of these children. Materials and Methods The study design used was qualitative interview. The participants consisted of caregivers of children with CP attending Hasiya Bayero Paediatric Specialists Hospital, Kano. The caregivers were sampled and interviewed by one of the researchers until theoretical saturation was attained. A note taker wrote down and recorded responses of the participants using a tape recorder. The data generated from the interview was then transcr...
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
Participation in Leisure Activities by Portuguese Children With Cerebral Palsy
Perceptual and Motor Skills, 2020
Leisure participation contributes to the health and wellbeing of children with and without physical disabilities. In the present cross-sectional study, we aimed to assess the influence of child and family factors on leisure activity participation of children with cerebral palsy (CP) aged 8-18 years. A convenience sample of 69 participants with CP (M age = 12.75 years, SD = 2.95; 45 males) responded to the Children’s Assessment of Participation and Enjoyment questionnaire to report participation diversity, frequency, companies, environment and enjoyment in leisure activities. From these questionnaires, we used descriptive statistics to summarize overall participation, two activity domains (formal and informal) and five activity types (recreational, social, active physical, skill-based, and self-improvement). Regression analysis assessed child and family factors’ influence on participation. On average, children with CP were involved in 21 leisure activities in the last four months. Wi...