关键词: 先天性肾上腺皮质增生症；儿童；家庭生活质量；满意度；育儿胜任感；社会支持

Abstract: Objective: To describe the family quality of life of children with Congenital Adrenal Hyperplasia (CAH) and explore the main influencing factors, so as to provide a reference for clinical targeted nursing. Methods: A total of 196 children with CAH and their parents were selected from May 2022 to December 2023 in the pediatric endocrinology department of a Grade-A hospital in Guangzhou. The survey was conducted using the Beach Center Family Quality of Life Scale, parental competence scale and perceived social support scale. Multiple linear regression analysis was used to identify the influencing factors of quality of life. Results: The total score of satisfaction with family quality of life was (95.07±14.12) points, and the scores of each dimension were (23.76±3.58) points also the highest score for family interaction, (14.66±2.78) points for emotional health, (23.31±3.73) points for parental care, (19.09±3.65) points for physical health and material welfare, and (14.26±3.20) points for support related to disability, which ranked the lowest in number. According to the results, the higher the educational attainment of parents, the higher their sense of competence in parenting, and the more social support they could receive with better family quality of life (P<0.05). Conclusion: The overall family quality of life for children with CAH needs improvement, especially the support related to disability, which obviously needs to be enhanced. Particular attention should be paid to families with parents of lower educational attainment. Enhancing their parenting self-efficacy and providing targeted support can serve as an important pathway to improve their family quality of life.

Key words: Congenital Adrenal Hyperplasia; children; family quality of life; satisfaction; parenting competence; social support