Xu Li, Liu Meili, Chen Yuewei, Wu Liwen, Gan Siyi, Xie Jianhui, Latour Jos M
Department of Neurology, Hunan Children's Hospital, Changsha, China.
Nursing Department, Hunan Children's Hospital, Changsha, China.
Ital J Pediatr. 2025 Feb 21;51(1):51. doi: 10.1186/s13052-025-01840-z.
The aim of the study was to identify the post-traumatic growth status and influencing factors of parents with children with Duchenne muscular dystrophy (DMD).
We adopted a cross-section survey study. Between February and December 2022, 181 parents responded to the survey including a participants' characteristics section, post-traumatic growth assessment scale, caregiver burden scale, and social support assessment scale. Multiple linear regression analysis was used to investigate influencing factors of post-traumatic growth.
The mean score of post-traumatic growth of parents was 56.66 (SD ± 18.67). Post-traumatic growth was positively correlated with social support (r = 0.452, P < 0.01) and negatively correlated with care burden (r = -0.207, P < 0.01). Multiple linear regression showed that the child's age, course of disease, self-care ability, parent's working condition, residence, education, number of children, and health status were the main influencing factors for the post-traumatic growth of parents (P < 0.001).
The post-traumatic growth of parents with children with DMD was at a moderate level. Healthcare professionals should pay attention to the psychological state of parents with children with this rare disease and promote post-traumatic growth through psychological mindfulness interventions, strengthening family and social support, and providing care knowledge and skills.
本研究旨在确定杜氏肌营养不良症(DMD)患儿家长的创伤后成长状况及影响因素。
我们采用了横断面调查研究。在2022年2月至12月期间,181名家长参与了调查,调查内容包括参与者特征部分、创伤后成长评估量表、照顾者负担量表和社会支持评估量表。采用多元线性回归分析来调查创伤后成长的影响因素。
家长创伤后成长的平均得分为56.66(标准差±18.67)。创伤后成长与社会支持呈正相关(r = 0.452,P < 0.01),与照顾负担呈负相关(r = -0.207,P < 0.01)。多元线性回归显示,孩子的年龄、病程、自我照顾能力、家长的工作状况、居住地、教育程度、孩子数量和健康状况是家长创伤后成长的主要影响因素(P < 0.001)。
DMD患儿家长的创伤后成长处于中等水平。医疗保健专业人员应关注患有这种罕见疾病患儿家长的心理状态,并通过心理正念干预、加强家庭和社会支持以及提供护理知识和技能来促进创伤后成长。