Family quality of life among families who have children with mild intellectual disability associated with mild autism spectrum disorder

ABSTRACT

Background: Intellectual disability (ID) and autism spectrum disorder (ASD) are often concomitant childhood developmental disorders. These disorders can alter family quality of life (FQoL). Objective: To investigate FQoL among families who have children with mild ID, associated with mild ASD. Methods: Cross-sectional descriptive study with 69 families who have children with mild ID and ASD, ranging from six to 16 years old, and who were provided with disability-related services in Brazil. Data were collected using a family sociodemographic questionnaire, an ID and ASD personal profile form, the Barthel index for activities of daily living and the Beach Center FQoL scale. Results: People with ID and ASD had an average score of 88.2±11.5 in the Barthel index, thus indicating moderate dependency in basic activities of daily living. The average total FQoL score (3.56±0.34) was lower than the scores for the “family interaction” (3.91±0.42; p<0.001), “parenting” (3.79±0.35; p<0.001) and “disability-related support” (3.98±0.16; p<0.001) domains; and higher than the scores for the “physical/material well-being” (3.19±0.64; p<0.001) and “emotional wellbeing” (2.75±0.62; p<0.001) domains. Parents’ marital condition, monthly family income, family religious practice and effective communication skills among the people with ID and ASD were predictors for FQoL (R²=0.407; p<0.001). Conclusions: FQoL was sustained through factors such as family interaction and parents’ care for their children. Improving families’ emotional wellbeing and physical and material conditions is likely to positively affect the FQoL of these families.

RESUMO

Antecedentes: Deficiência intelectual (DI) e transtorno do espectro do autismo (TEA) são distúrbios do desenvolvimento infantil frequentemente concomitantes que podem impactar na qualidade de vida familiar (QVF). Objetivo: Esta pesquisa avaliou a QVF entre famílias que têm filhos com DI leve associada a TEA leve. Métodos: Pesquisa transversal e descritiva, que investigou 69 famílias com filhos com DI e TEA leves, com idades entre seis e 16 anos, que recebiam serviços relacionados à deficiência no Brasil. Os dados foram coletados por meio de formulário sociodemográfico, formulário de perfil da pessoa com DI e TEA, o índice de funcionalidade de Barthel e a Escala de QVF do Beach Center. Resultados: Os indivíduos com DI e TEA obtiveram pontuação média de 88,2±11,5 no índice de Barthel, o que indicou dependência moderada nas atividades básicas de vida diária. O escore médio da QVF total (3,56±0,34) foi menor que os escores dos domínios “interação familiar” (3,91±0,42; p<0,001), “cuidados dos pais com os filhos” (3,79±0,35; p<0,001) e “apoio ao deficiente” (3,98±0,16; p<0,001), e maior que os escores dos domínios “bem-estar físico-material” (3,19±0,64; p<0,001) e “bem-estar emocional” (2,75±0,62; p<0,001). Condição marital dos pais, renda mensal, prática religiosa e comunicação adequada dos indivíduos com DI e TEA foram preditores da QVF (R²=0,407; p<0,001). Conclusões: A QVF foi sustentada por aspectos como a interação familiar e o cuidado dos pais com os filhos. Melhorar o bem-estar emocional e as condições físicas e materiais familiares provavelmente afetará positivamente a qualidade de vida dessas famílias.

Keywords:

Intellectual Disability - Autism Spectrum Disorder - Quality of Life - Family - Family Relations - Brazil

Palavras-chave:

Deficiência Intelectual - Transtorno do Espectro Autista - Qualidade de Vida - Família - Relações Familiares - Brasil

Authors’ contributions:

MCB: participated in the conception and design of the research project, data collection, analysis and interpretation, and writing, review and approval of the final version; CMRG: participated in the conception and design of the research project, data analysis and interpretation, and critical review and approval of the final version; LRSA, RFP: participated in the conception and design of the research project, data interpretation, and critical review and approval of the final version; DGM: participated in the conception, design and supervision of the research project, data analysis and interpretation, and writing, review and approval of the final version.

Support

Fundação de Amparo à Pesquisa do Estado de São Paulo (FAPESP, Grant 18/19875-0), Coordenação de Aperfeiçoamento de Pessoal de Nível Superior (CAPES, Grant 88887.136366/2017-00) and Conselho Nacional de Desenvolvimento Científico e Tecnológico (CNPq, Grant 465549/2014-4).

Publication History

Received: 14 November 2020

Accepted: 15 June 2021

Article published online:
31 January 2023

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