Relationship Between Quality of Life and Social Support in Parents of Children with Congenital Anorectal Malformations in China

Purpose: This study aimed to explore the quality of life (QOL) and social support of parents of children with congenital anorectal malformation (ARM), and to examine the relationship between them. Design and methods: A cross-sectional study was conducted at Anhui Provincial Children's Hospital of China from January to June of 2018. A total of 108 parents participated in this survey. QOL and social support were accessed using the short version of the World Health Organization's Quality of Life Instrument (WHOQOL-BREF) and the Social Support Rate Scale (SSRS), respectively. Analyses were performed with multivariate linear regression and canonical correlation. Results: The parents' scores in the physical, psychological, and environmental domains were lower than those in the general population in China. Gender, monthly income, combined malformation, objective support, subjective support and utilization of support were the major in fluencing factors of QOL. A canonical correlation analysis indicated social support was positively correlated with QOL, and subjective support, psychological domain had the largest standardized factor loading in social support and QOL. Conclusions: The QOL of parents of ARM patients was not optimistic. More attention needs to be paid to increasing social support for the parents of ARM to enhance their QOL. Practice implications: For government, increasing funds and resources to invest in the establishment and improvement of the social support network is necessary. For doctors and nurses, providing better medical and psychological services to patients and their parents is essential. (c) 2020 Elsevier Inc. All rights reserved.