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

Fatimah Saeed AlAhmari; Ahmed Fawzi Alageel; Maha Abdullah Aldosari; Muhammed Younus Bagha

doi:10.1016/j.amsu.2022.104428

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

Ann Med Surg (Lond). 2022 Sep 5:81:104428. doi: 10.1016/j.amsu.2022.104428. eCollection 2022 Sep.

Authors

Fatimah Saeed AlAhmari¹, Ahmed Fawzi Alageel², Maha Abdullah Aldosari³, Muhammed Younus Bagha⁴

Affiliations

¹ Developmental & Behavioural Pediatrics, King Abdullah Specialized Children Hospital, National Guard Health Affairs, Riyadh, Saudi Arabia.
² College of Medicine, King Saud Bin Abdulaziz for Health Sciences, Riyadh, Saudi Arabia.
³ Mental Health Department, King Fahad Medical City, Riyadh, Saudi Arabia.
⁴ Department of Pediatrics, King Abdullah Specialized Children Hospital, National Guard Health Affairs, Riyadh, Saudi Arabia.

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.

Keywords: Caregivers; Down syndrome; Morbidity; Quality of life; Survey.