Division of Neuropediatrics and Developmental Medicine, University Children's Hospital of Basel (UKBB), University of Basel, Basel, Switzerland.
Division of Neuropediatrics and Developmental Medicine, University Children's Hospital of Basel (UKBB), University of Basel, Basel, Switzerland; Department of Neurology, General Hospital Hietzing with Neurological Center Rosenhügel, Vienna, Austria.
Eur J Paediatr Neurol. 2019 Nov;23(6):832-841. doi: 10.1016/j.ejpn.2019.09.008. Epub 2019 Sep 20.
This cross-sectional study aimed to assess psychosocial adjustment of children with Duchenne Muscular Dystrophy (DMD) and to explore its possible association to parental stress.
34 children with DMD, 9-14.1 years of age, and their parents were included in the study. Caregivers completed the Child Behaviour Checklist (CBCL), the Psychosocial Adjustment and Role Skills Scale III (PARS-III) and the Parenting Stress Index-Short Form (PSI-SF). Patients older than 11 years completed the Youth Self Report (YSR). Regression analyses including parental stress, socio-demographic and disorder-related factors were performed to determine how these aspects influence the psychosocial adjustment in children with DMD.
Depending on the measure, 15%-47% of children with DMD were found to be psychosocially "at risk" for emotional and behavioural problems. Age showed no association with psychosocial adjustment. Half of the caregivers experienced very high parenting stress. Moreover, the two aspects parent-child dysfunctional interaction and difficult child scores were associated to psychosocial adjustment. Regression analyses showed that both parental stress and participation in a DMD support group are related to the psychosocial adjustment.
The PARS-III represents a more suitable instrument assessing psychosocial adjustment in DMD, since compared to the CBCL it excludes physiological symptoms regarding chronic diseases. Decreased parents' stress levels and participation in a DMD support group positively contributed to good psychosocial adjustment. A family-centered approach is crucial for interventions in order to improve the psychosocial adjustment of these children and their families even while living with the significant burdens associated with DMD.
本横断面研究旨在评估杜氏肌营养不良症（DMD）患儿的心理社会适应情况，并探讨其与父母压力的可能关联。
本研究纳入了 34 名年龄在 9-14.1 岁的 DMD 患儿及其父母。照顾者完成了儿童行为检查表（CBCL）、心理社会适应和角色技能量表 III（PARS-III）和父母压力指数-短表（PSI-SF）。年龄大于 11 岁的患者完成了青少年自我报告（YSR）。进行回归分析，包括父母压力、社会人口学和疾病相关因素，以确定这些方面如何影响 DMD 患儿的心理社会适应。
根据不同的评估工具，15%-47%的 DMD 患儿在情绪和行为问题方面存在心理社会“风险”。年龄与心理社会适应无关。一半的照顾者经历了非常高的育儿压力。此外，亲子功能障碍互动和困难儿童评分这两个方面与心理社会适应相关。回归分析表明，父母压力和参加 DMD 支持小组都与心理社会适应有关。
与 CBCL 相比，PARS-III 更适合评估 DMD 患儿的心理社会适应情况，因为它排除了与慢性疾病相关的生理症状。降低父母的压力水平和参加 DMD 支持小组对良好的心理社会适应有积极贡献。以家庭为中心的方法对于干预至关重要，即使在与 DMD 相关的重大负担下，也能改善这些儿童及其家庭的心理社会适应。
