AlAhmari Fatimah Saeed, Alageel Ahmed Fawzi, Aldosari Maha Abdullah, Bagha Muhammed Younus
Developmental & Behavioural Pediatrics, King Abdullah Specialized Children Hospital, National Guard Health Affairs, Riyadh, Saudi Arabia.
College of Medicine, King Saud Bin Abdulaziz for Health Sciences, Riyadh, Saudi Arabia.
Ann Med Surg (Lond). 2022 Sep 5;81:104428. doi: 10.1016/j.amsu.2022.104428. eCollection 2022 Sep.
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.
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.
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.
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.
由于唐氏综合征(DS)患儿通常有严重的发病率,他们也会给其照顾者带来巨大负担,并影响照顾者的生活质量(QoL)。我们开展这项研究,旨在调查在沙特阿拉伯,照顾患有DS的儿童是否会影响照顾者生活质量的不同领域。
这是一项在沙特阿拉伯利雅得的一家三级护理医院进行的横断面现象学定性研究。为评估研究结果,我们使用世界卫生组织生活质量简表(WHOQOL-BREF)来评估生活质量的不同领域。
我们纳入了261名对问卷做出回应的DS患儿的照顾者。WHOQOL-BREF各领域的平均(标准差)得分分别为84(±15)、88(±15)、41(±10)和105(±24),分别包括身体、心理、社会关系和环境领域。这些领域所报告的所有得分之间存在显著差异(P值<0.001)。此外,教育水平和子女数量与心理和身体领域显著相关,而子女数量是与社会关系唯一显著相关的变量。最后,教育水平、子女数量和平均月收入均与环境领域显著相关。
我们的研究表明,DS患儿照顾者的生活质量在不同领域受到显著影响,这表明迫切需要采取适当的干预措施。