AUTHOR=Lv Meng , Feng-Fang Ya , Wang Yi , Zhen-Xu Hong 

TITLE=Factors contributing to emotional distress when caring for children with imperforate anus: a multisite cross-sectional study in China

JOURNAL=Frontiers in Medicine

VOLUME=Volume 10 - 2023

YEAR=2023

URL=https://www.frontiersin.org/journals/medicine/articles/10.3389/fmed.2023.1088672

DOI=10.3389/fmed.2023.1088672

ISSN=2296-858X

ABSTRACT=Background: Imperforate anus (IA) has a life-long impact on patients and their families. Caregivers of children with IA (CoCIA) might experience distress, which could be physically and mentally detrimental. However, related studies were limited.
This study aimed to explore the prevalent and associated factors of CoCIA's distress.
Methods: A cross-sectional study was conducted in three tertiary children's hospitals from November 2018 to February 2019. Distress was assessed using the Chinese Version of the Kessler Psychological Distress Scale, and possible determinants were assessed by the Caregiver Reaction Assessment, Parent Stigma Scale, Parents' Perception of Uncertainty Scale, and Social Support Scale. Demographic and clinical information was also collected. Multiple regression analysis was used to explore the association between variables.
Results: Among 229 CoCIA, 52.9% experienced a high level of distress or above. Data analysis showed health problems pertaining to caregiving, stigma, uncertainty, social support, and children who underwent anal reconstruction surgery ≥ 1 year could significantly predicate caregivers' distress, and these factors could explain 50.1% of the variance.
Conclusions: The majority of the caregivers of children with IA experience a high level of distress, especially when the children underwent anal reconstruction surgery ≥1 year, also, health problems pertaining to caregiving, stigma, uncertainty, and low social support could significantly predicate caregivers' distress. Clinical medical staff should be cognizant of the prevalent situation of caregivers' distress, and targeted interventions focused on the modifiable factors should be carried out in family-based care.