Arai Yuto, Kadekaru Ryuki, Okanishi Tohru, Tamasaki Akiko, Maegaki Yoshihiro
Child Neurology, Tottori University Hospital, Yonago, JPN.
Psychology, Advanced Medicine, Innovation and Clinical Research Center, Tottori University Hospital, Yonago, JPN.
Cureus. 2024 Jul 15;16(7):e64562. doi: 10.7759/cureus.64562. eCollection 2024 Jul.
Home care for children with severe motor and intellectual disabilities (SMID) is challenging for parents because it is highly intensive and long-lasting. The pursuit of happiness is an essential goal for everyone. However, only a few studies have focused on the happiness of families with such children.
The study aimed to examine the subjective happiness of parents of children with SMID receiving home care and identify the factors associated with their happiness.
We conducted a cross-sectional online questionnaire-based survey of 23 parents of children with SMID and nurses with children without disabilities as controls at Tottori University Hospital, Yonago, Japan from July 1 to August 31, 2023. We set the subjective happiness scale (SHS) scores as the outcomes. We used the Mann-Whitney U test to compare the SHS scores between the two groups. Moreover, we extracted the clinical and demographic factors affecting the SHS scores of parents of children with SMID using univariate linear regression analysis.
We obtained responses from 12 parents with SMID and 105 controls. The average SHS scores of parents with SMID and controls were 4.8 and 4.7, respectively, and both groups did not differ significantly. Univariate analysis showed that parental male sex and the presence of a tracheostomy were negatively associated with the SHS scores of parents.
The SHS scores did not differ significantly between parents with SMID and controls. However, more attention seemed necessary for fathers and parents of children who have undergone tracheostomies. Given the exploratory nature of this study and its small sample size, larger-scale investigations are warranted. Additionally, qualitative research conducted after establishing trustful relationships could provide further insights.
对患有严重运动和智力残疾（SMID）儿童的家庭护理对父母来说具有挑战性，因为它强度高且持续时间长。追求幸福是每个人的基本目标。然而，只有少数研究关注有此类儿童的家庭的幸福感。
本研究旨在调查接受家庭护理的SMID儿童的父母的主观幸福感，并确定与他们幸福感相关的因素。
2023年7月1日至8月31日，我们在日本米子市鸟取大学医院对23名SMID儿童的父母和作为对照的有非残疾子女的护士进行了一项基于在线问卷的横断面调查。我们将主观幸福感量表（SHS）得分设为结果。我们使用曼-惠特尼U检验比较两组的SHS得分。此外，我们使用单变量线性回归分析提取影响SMID儿童父母SHS得分的临床和人口统计学因素。
我们获得了12名SMID儿童父母和105名对照的回复。SMID儿童父母和对照的平均SHS得分分别为4.8和4.7，两组之间无显著差异。单变量分析表明，父母为男性以及存在气管造口术与父母的SHS得分呈负相关。
SMID儿童父母和对照的SHS得分无显著差异。然而，对于父亲以及接受过气管造口术儿童的父母似乎需要更多关注。鉴于本研究的探索性质及其小样本量，有必要进行更大规模的调查。此外，在建立信任关系后开展定性研究可能会提供更多见解。
