主管:国家卫生健康委员会
主办:国家卫生计生委医院管理研究所
中国科学引文数据库(CSCD)来源期刊
中国科技论文统计源期刊 中国科技核心期刊
《中文核心期刊要目总览》入选期刊

Chinese Nursing Management ›› 2026, Vol. 26 ›› Issue (1): 45-50.doi: 10.3969/j.issn.1672-1756.2026.01.010

• Research Papers • Previous Articles     Next Articles

Family quality of life and influcing factors in children with Congenital Adrenal Hyperplasia

LIU Qian, CAI Guiyi, OU Hui, FANG Jia, XIE Shanshan, ZENG Ying, ZHONG Ting, ZHANG Lifeng   

  1. Department of Pediatrics, Sun Yat-sen Memorial Hospital, Sun Yat-sen University, Guangzhou, 510300, China
  • Online:2026-01-15 Published:2026-01-15
  • Contact: E-mail:zhlfeng@mail.sysu.edu.cn

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

CLC Number: R47;R197