Caregiving of children with Down syndrome: impact on quality of life, stress, mental and oral health

As individuals with Down syndrome often suffer from oro-facial abnormalities which can affect their oral health as well as their and their family’s quality of life, this link was examined in the present study. Using a descriptive cross-sectional design, 63 parents of children with Down syndrome who attended two special daycare centres in Riyadh, Saudi Arabia, were surveyed using a self-administered validated questionnaire. The findings yielded by the Statistical Package for the Social Sciences (SPSS Inc., Chicago, IL, USA) version 17 revealed that in 34.9% children and 46% of their families, quality of life was affected by oral health. Moreover, 54% children experienced physical pain, which was severe in 22.2% of the cases. Further analyses revealed that families’ emotional lives were negatively affected by children’s oral health status. Therefore, as oral health in children with Down syndrome exerts significant adverse impacts on different aspects of their lives and those of their families, timely provision of required oral health care is warranted.

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Family Variables and Quality of Life in Children with Down Syndrome: A Scoping Review

International Journal of Environmental Research and Public Health ◽

10.3390/ijerph18020419 ◽

2021 ◽

Vol 18 (2) ◽

pp. 419

Author(s):

Anna Lee ◽

Kathleen Knafl ◽

Marcia Van Riper

Keyword(s):

Quality Of Life ◽

Down Syndrome ◽

Scoping Review ◽

Personal Development ◽

Well Being ◽

Future Research ◽

Cross Sectional ◽

Children With Down Syndrome ◽

Family Variables

The purpose of this scoping review was to identify the family and child quality of life variables that have been studied in relation to one another in children with Down syndrome, the frequency with which different relationships have been studied, and the extent to which family variables were the focus of the research aims. A literature search was conducted to find studies published between January 2007 and June 2018. The initial search yielded 2314 studies; of these, 43 were selected for a final review. Researchers most often addressed family resources and family problem-solving and coping concerning child personal development and physical well-being. Little attention to child emotional well-being was observed, with none considering family appraisal of child emotional well-being. The relationship between family variables and child QoL rarely was the primary focus of the study. Methodologically, most reviewed studies used cross-sectional designs, were conducted in North America and based on maternal report. From future research considering the issues found in this review, healthcare providers can obtain an in-depth understanding of relationships between children and family variables.

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Dance, functioning and quality of life in children with Down syndrome and autism spectrum disorder dance, functioning and quality of life in Down syndrome and autism spectrum disorder

Clinical Child Psychology and Psychiatry ◽

10.1177/13591045211061795 ◽

2021 ◽

pp. 135910452110617

Author(s):

Evanilza T. Adorno ◽

Daiany C de J. Dos Santos ◽

Beatriz M. DeJesus ◽

Adrielle A. Passos ◽

Lavínia Teixeira-Machado

Keyword(s):

Quality Of Life ◽

Autism Spectrum Disorder ◽

Down Syndrome ◽

Rating Scale ◽

Functional Independence Measure ◽

Functional Independence ◽

Autism Spectrum ◽

Spectrum Disorder ◽

Children With Down Syndrome

This study investigated dance practice in psychosocial and functional aspects, and quality of life in children with Down syndrome and autism spectrum disorder. Children with DS and ASD, between 3 and 12 years old, attended a dance program during 16 sessions/lessons, lasting 60 min, twice a week, in suitable place. Functional Independence Measure (FIM), Childhood Autism Rating Scale SF-36 quality of life survey, and Knowledge, Attitude and Practice Inquiry (KAP Inquiry) were applied before and after dance classes. Eleven participants concluded the study. Functional independence changes were observed in relation to self-care, sphincter control, locomotion, and communication domains. Children’ “quality of life” reported by parents showed changes in functional capacity, vitality, mental health, physical and social aspects, and general state of health domains. These findings suggest that regular dance practice can underlie psychosocial adjustments in children with DS and ASD.

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