Do adolescents with cerebral palsy agree with their caregivers on their participation and quality of life?

Hwang

et al. 2019

IJERPH

Participation has significant impact on children’s health and well-being. Knowledge is limited on how children with disabilities perceive their participation and whether their perceptions differ from their parents. This pilot study aimed to explore whether self-reported frequency of participation and prioritized activities differ between children with disabilities and their parents. Thirty children with disabilities eligible for special education in elementary school and their parents were included. Each of them were interviewed with the Chinese version of Picture My Participation (PMP), separately, to identify the child’s participation frequency in 21 activities at home, school, and community, desire-to-change activities, and the level of involvement in these activities. The results indicated that children’s ratings of participation frequency were significantly lower than parents’ ratings in home activities but not in school and community activities, as analyzed by the Wilcoxon Signed Ranked test. Nineteen (63%) child–parent pairs had selected entirely different items as their desire-to-change activities. Children selected the activities that they were somewhat to very involved in; while parents selected the activities they thought their children were less involved in. Our findings suggest that children with disabilities had unique views on life and this should be supported in their health care and individualized education plans.

Section: Discussionmentioning

confidence: 63%

Section: Discussionmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

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Understanding the Participation in Home, School, and Community Activities Reported by Children with Disabilities and Their Parents: A Pilot Study

Hwang

et al. 2019

IJERPH

“…1, March 2021 A poorly equipped classroom might have more of an impact on the physical and socio-emotional development than an accessible one, for example. Studies on children with cerebral palsy found that their chronic pain and fatigue caused them to experience significant disruptions to daily life that markedly lowered their QoL (Berrin et al, 2007;Bugȗsan et al, 2018;McKinnon et al, 2020;Ostojic et al, 2020). While the intensity and frequency of chronic pain are known to lower children's and adolescents' QoL (Bugȗsan et al, 2018;Gold et al, 2009), little is known about the impact of chronic pain on the education of teenage students with physical and developmental disabilities.…”

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confidence: 99%

“…Studies on children with cerebral palsy found that their chronic pain and fatigue caused them to experience significant disruptions to daily life that markedly lowered their QoL (Berrin et al, 2007;Bugȗsan et al, 2018;McKinnon et al, 2020;Ostojic et al, 2020). While the intensity and frequency of chronic pain are known to lower children's and adolescents' QoL (Bugȗsan et al, 2018;Gold et al, 2009), little is known about the impact of chronic pain on the education of teenage students with physical and developmental disabilities. The purpose of this study is to examine the effects of chronic pain on the education of high school female learners with physical and developmental disabilities, ultimately discovering and disseminating chronic pain management tools that promote school participation.…”

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confidence: 99%

The Entwinement of Disability and Paediatric Chronic Pain and their Impact on the High School Education of Students with Disabilities

Ressa¹

2021

JEHD

Globally, 20-35% of children experience chronic pain that negatively impacts their schooling and quality of life. Yet, few studies have focused on the entwinement of disability, paediatric chronic pain, and education. This qualitative study on disability and chronic pain used accounts of three female undergraduate students with physical and developmental disabilities to identify the impact of paediatric chronic pain on their high school education. Three significant concepts emerged from the data: the impact of chronic pain on academics, teacher-student discrepant views of ability, and collaborative painmanagement approach. The study concludes that there is a need for school programs that target academic and personal needs to improve the education of high schoolers with disabilities experiencing chronic pain. It is particularly imperative to train educators in pain identification and management techniques to increase appropriate support for students so they can participate in learning and perform to their full potential.

Deviations of body functions and structure, activity limitations, and participation restrictions of the International Classification of Functioning, Disability, and Health model in children with cystic fibrosis and non–cystic fibrosis bronchiectasis

özipek

Arıkan

Çalık-Kütükçü

et al. 2020

Pediatric Pulmonology

Background To the best of our knowledge, there is no study in the literature investigating the extrapulmonary outcomes of children with non–cystic fibrosis (CF) bronchiectasis and CF under the framework of the International Classification of Functioning, Disability, and Health (ICF) model. The purpose of the present study is to evaluate the children with CF and non‐CF bronchiectasis using the ICF model. Materials and Methods Children with CF, non‐CF bronchiectasis, and healthy counterparts were evaluated (20 participants in each group) according to the ICF items in domain b (body functions), domain s (body structures), and domain d (activities and participation). The pulmonary functions, respiratory and peripheral muscle strength tests, and posture analysis were carried out for domain b. For domain d, however, the Glittre‐activities of daily living test and Pediatric Outcome Data Collection were used. Results Muscle strength of shoulder abductors and hip extensors in children with CF was significantly lower than healthy children and adolescents (P < .05). The severity of lateral and posterior postural abnormalities in children with CF and non‐CF bronchiectasis was higher than those of healthy children (P < .05). Among the patient groups, global function, sports/physical function, expectations, transfers/basic mobility, and pain/comfort were the most affected participation dimensions (P < .05). Conclusions This study highlights the need for comprehensive up‐to‐date evaluation methods according to the ICF model for understanding rehabilitation requirements in CF and non‐CF bronchiectasis in different age groups.