Do environmental barriers affect the parent-reported quality of life of children and adolescents with cerebral palsy?

Badía, Marta; Orgaz, Begoña; Vela, María Gómez; Verdugo, Miguel Á.; Ullán, Ana M.; Longo, Elson

doi:10.1016/j.ridd.2015.12.011

Cited by 35 publications

(30 citation statements)

References 54 publications

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“…This finding demonstrates the importance of awareness programs aimed at social inclusion and minimizing prejudice experienced by these families in the community, schools, or public services [ 35 , 36 ]. Studies have highlighted the importance of strengthening interventions in terms of context, since the environment will likely have more potential to change than domains such as body function and structure [ 37 , 38 , 39 ].…”

Section: Discussionmentioning

confidence: 99%

Functioning and Disability Profile of Children with Microcephaly Associated with Congenital Zika Virus Infection

Ferreira

Schiariti

Regalado

et al. 2018

IJERPH

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Introduction: The increase in the number of cases of microcephaly in Brazil and its association with the Zika virus (ZIKV) is a global public health problem. The International Classification of Functioning Disability and Health (ICF) model is a powerful tool and extremely relevant in managing disability. Objective: Describe the functioning profile of children with microcephaly associated with ZIKV in two states of northeastern Brazil. Methods: This is a descriptive cross-sectional study. The sociodemographic characteristics, head circumference, and other clinical data were collected from medical charts, physical examinations, measuring instruments, and interviews with the children and their parents. The Brazilian Portuguese version of the Brief Common ICF Core Set for cerebral palsy (CP) was used. Each ICF category was assigned a qualifier, which ranged from 0 to 4 (no problem, mild problem, moderate problem, severe problem, complete problem). For environmental factors, 0 represents no barrier and 4 represents complete barrier; +0, no facilitator and +4, complete facilitator. Results: A total of 34 children with microcephaly caused by ZIKV were recruited (18 girls and 16 boys) at four rehabilitation facilities in Rio Grande do Norte and Paraíba states, Brazil. The average age of the participants was 21 months, monthly income was ≈USD 300.00, and head circumference z-scores ranged between 0.92 and −5.51. The functioning profile revealed complete disability in most of the body function categories (b). The activity and participation areas (d) were highly impacted, particularly in mobility-related categories. With respect to environmental factors (e), most of the sample reported a complete facilitator for the immediate family, friends, and health services, systems, and policies, as well as a complete barrier to societal attitudes. Conclusion: This is the first study that describes the functioning profile of children with microcephaly associated with ZIKV, using a tool based on the ICF in Brazil. Our findings reinforce the need to maximize health care and access to information, based on the ICF, for multiprofessional teams, administrators, family members, and children.

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Section: Discussionmentioning

confidence: 99%

Functioning and Disability Profile of Children with Microcephaly Associated with Congenital Zika Virus Infection

Ferreira

Schiariti

Regalado

et al. 2018

IJERPH

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“…for assessing the QoL of children with CP also identified that children with CP with greater motor limitations and higher levels of GMFCS had lower scores in the domains of QoL related to functionality and social interaction [31,32].…”

Section: Resultsmentioning

confidence: 99%

Functionality, school participation and quality of life of schoolchildren with cerebral palsy

et al. 2020

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Introduction: The quality of life (QoL) of schoolchildren with cerebral palsy (CP) should be evaluated considering the functional variability of the child with CP with an extended view on functionality in the school context and the determinants of QoL. Objective: to evaluate the school participation and the QoL of schoolchildren with CP in Recife's municipal public network, as well as to analyze the influence of GMFCS levels and motor performance on these variables in the study population. Method: This is an exploratory observational study whose evaluation model was structured based on the International Classification of Functioning, Disability and Health (CIF). Children with CP were classified in the Gross Motor Function Classification System (GMFCS) and evaluated according to Gross Motor Function Measure-88 (GMFM-88). The School Function Assessment (SFA) and the Quality of Life Questionnaire for Cerebral Palsy (CPQOL-Caregiver) were answered by teachers and mothers, respectively. Results: In the study population, the higher the GMFCS level, the lower the participation and the lower the independence in school activities, aspects that add to the QoL construct, mainly with less functionality, less emotional well-being and self-esteem, and lower family health. Conclusion: GMFCS levels and motor performance of schoolchildren with CP can affect school participation and QoL, and it is important to consider each child's individual and contextual factors. These results can help the development of functional, care, inclusion and pedagogical strategies for students with CP.

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“…En esa misma línea, Braccialli et al 16 encontraron que mayoritariamente los cuidadores de los niños con PC son las madres y tienen un nivel educativo más bajo que el referido por los padres. En cuanto al nivel educativo de los cuidadores, se encontró que quienes contaban con educación universitaria o posgradual refirieron mejor CVRS de los niños en el dominio de actividad física y salud, lo cual es similar a lo reportado por Badia et al 32 ¡Error! Marcador no definido., quienes en su investigación con niños con enfermedades crónicas observaron una tendencia a referir mejor bienestar en el funcionamiento físico de los niños de padres con más alto nivel educativo.…”

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Calidad de vida relacionada con características sociodemográficas y clínicas en niños con parálisis cerebral

Roldán

2020

Duazary

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La parálisis cerebral (PC) es la causa más frecuente de discapacidad en la infancia. El objetivo fue determinar la calidad de vida relacionada con la salud (CVRS) de niños y niñas entre 8 y 12 años con PC y relacionarlo con características sociodemográficas y clínicas. Estudio descriptivo correlacional; se aplicó cuestionario con información sociodemográfica y clínica y el Kidscreen 27 a una población de 100 niños con PC o a sus cuidadores principales, para el caso de aquellos con dificultades cognitivas o comunicativas. La dimensión de entorno escolar y estado de ánimo y sentimientos fueron mejor percibidas. En los niños más pequeños (8 a 9 años) se encontró una mejor percepción sobre la actividad física y la vida familiar y el tiempo libre, mientras que los niños mayores (10 a 12 años) en el dominio de apoyo social y amigos. Los niños de estrato socioeconómico alto dieron mayor puntuación en todos los dominios de calidad de vida al igual que los niños menos comprometidos en su función motora gruesa. El más alto nivel educativo de los cuidadores, estrato socioeconómico alto y menor severidad en el compromiso motor en los niños con PC, se relaciona con una mejor calidad de vida.

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Do environmental barriers affect the parent-reported quality of life of children and adolescents with cerebral palsy?

Cited by 35 publications

References 54 publications

Functioning and Disability Profile of Children with Microcephaly Associated with Congenital Zika Virus Infection

Functioning and Disability Profile of Children with Microcephaly Associated with Congenital Zika Virus Infection

Functionality, school participation and quality of life of schoolchildren with cerebral palsy

Calidad de vida relacionada con características sociodemográficas y clínicas en niños con parálisis cerebral

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