The quality of life of parents of children with down syndrome in a tertiary care hospital: A qualitative research study at Saudi Arabia. (September 2022)

• Record Type: Journal Article
• Authors: AlAhmari, Fatimah Saeed; Alageel, Ahmed Fawzi; Aldosari, Maha Abdullah; Bagha, Muhammed Younus
• Is Part Of: Annals of medicine and surgery. Volume 81(2022)
• Publication Date: 2022-09
• Subjects: Down syndrome -- Quality of life -- Survey -- Caregivers -- Morbidity; Surgery -- Periodicals; Medicine -- Periodicals; General Surgery -- Periodicals; Education, Medical -- Periodicals; Periodicals; 617
• DOI: 10.1016/j.amsu.2022.104428
• Languages: English
• ISSNs: 2049-0801

Abstract

Abstract: Background: As children with down syndrome (DS) usually have significant morbidities, they can also represent a significant burden on their caregivers and impact their quality of life (QoL). We conducted this study to investigate whether or not having DS children can impact the different domains of the QoL of their caregivers in Saudi Arabia. Methods: This is a cross-sectional phenomenological qualitative research study that was conducted in a tertiary care hospital, Riyadh, Saudi Arabia. To assess the study outcomes, we used the WHOQOL-BREF to assess the different domains of the QoL. Results: We have included 261 caregivers to DS children that responded to our questionnaire. The mean (SD) scores for the WHOQOL-BREF domains were 84 (±15), 88 (±15), 41 (±10), and 105 (±24), including the physical, psychological, social relations, and environmental domains, respectively. There was a significant difference between all of the scores that have been reported for these domains (P-value <0.001). Furthermore, educational level and the number of children were significantly associated with the psychological and physical domains, while the number of children was the only significant variable with the social relation. Finally, educational level, number of children, and average monthly income were all significantly correlated with the environmental domain. Conclusion: Our study indicates that the QoL of caregivers to DS children is significantly impacted in the different domains, indicating the urgent need to apply adequate interventions. Highlights: Down syndrome is well-known for its less-than-optimal quality of life. The importance of caregivers and their roles in caring for down syndrome is important and is often overlooked. Studying and reporting the quality of life of the caregivers of Down syndrome patients is often missed and must be explored.