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Quality of life in children with Down syndrome and its association with parent and child demographic characteristics: Parent‐reported measures

Molecular genetics & genomic medicine, 2024-01, Vol.12 (1), p.e2337-n/a [Peer Reviewed Journal]

2023 The Authors. published by Wiley Periodicals LLC. ;2023 The Authors. Molecular Genetics & Genomic Medicine published by Wiley Periodicals LLC. ;2024. This work is published under http://creativecommons.org/licenses/by/4.0/ (the “License”). Notwithstanding the ProQuest Terms and Conditions, you may use this content in accordance with the terms of the License. ;ISSN: 2324-9269 ;EISSN: 2324-9269 ;DOI: 10.1002/mgg3.2337 ;PMID: 38093585

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  • Title:
    Quality of life in children with Down syndrome and its association with parent and child demographic characteristics: Parent‐reported measures
  • Author: Alrayes, Nuha ; Issa, Noha M. ; Alghubayshi, Omar Y. ; Al‐Amaa, Jumana Y. ; Alsabban, Ashwaq Hassan ; Al Shaer, Dalal Sameer ; Alyoubi, Reem Abdullah ; Nasser, Khalidah K. ; Alkhiary, Yaser M.
  • Subjects: Age ; Alzheimer's disease ; Autonomy ; Child ; Child development ; Children ; Children & youth ; Congenital diseases ; demographic data ; Demographics ; Demography ; Down Syndrome ; Down's syndrome ; Education ; Families & family life ; Family income ; Gender ; Genetic counseling ; Humans ; Intellectual disabilities ; KIDSCREEN‐27 ; Learning ; Medical personnel ; Medical research ; Parents ; Parents & parenting ; Population ; Professional ethics ; Psychological factors ; Quality of life ; Quality of Life - psychology ; Questionnaires ; Saudi Arabia ; School environment ; Social sciences ; Surveys and Questionnaires ; Validity
  • Is Part Of: Molecular genetics & genomic medicine, 2024-01, Vol.12 (1), p.e2337-n/a
  • Description: Background This study aims to explore the association between the quality of life (QoL) in children with Down syndrome (DS) and its relationship with demographic characteristics of both parents and children. The investigation encompasses five domains: physical and psychological well‐being, autonomy and parental relationship, social well‐being, and peers, as well as school and the learning environment. Method An online questionnaire, the KIDSCREEN‐27, was used to measure the QoL of 112 families with DS in Saudi Arabia, referred to as “Parent‐Reported Measures.” Descriptive statistics were analyzed using the Statistical Package for Social Sciences. Results The study found that the QoL of children with DS showed high scores in the psychological well‐being, autonomy, parental relations, school, and learning environment domains. However, the physical and social well‐being and peer domains had lower scores, although still considered “good scores.” Family income had a positively significant influence on all QoL domains. Specifically, higher family income was associated with better QoL outcomes, except for social well‐being. Parental age was found to influence psychological well‐being, while parental education and the relationship between the parent and child influenced social well‐being. Lastly, the child's gender was found to have an impact on the school and learning environment domain. Conclusion The study highlights the importance of understanding the impact of the demographic variability of children with DS and their parents on the QoL of their children. It emphasizes the need to address the needs of families with lower incomes and the importance of parental education and relationships with their children in improving social well‐being. The findings could aid policymakers and healthcare providers in improving the QoL for families with children who have DS. This study aims to determine the relationship between demographic variables of parents with down syndrome (DS) children and their quality of life (QoL). It is the first time to use the Arabic version KIDSCREEN questionnaire, after validation. This is the first study to measure the demographic variables influence on the reported QoL of children with DS. This study found that family income influenced all QoL domains except social well‐being. Psychological well‐being was influenced by parental age. Social well‐being was influenced by parental education. Finally, the school and learning environment was influenced by the child's gender.
  • Publisher: United States: John Wiley & Sons, Inc
  • Language: English
  • Identifier: ISSN: 2324-9269
    EISSN: 2324-9269
    DOI: 10.1002/mgg3.2337
    PMID: 38093585
  • Source: Open Access: DOAJ Directory of Open Access Journals
    Open Access: PubMed Central
    Open Access: Wiley Blackwell Open Access Journals
    AUTh Library subscriptions: ProQuest Central
    MEDLINE
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