Department of Medical Psychology, University Medical Center Hamburg-Eppendorf, Hamburg, Germany.
Cognitive and Behavioral Center for Research and Intervention, Faculty of Psychology and Education Sciences, University of Coimbra, Coimbra, Portugal.
Clin Psychol Psychother. 2018 Jan;25(1):e107-e118. doi: 10.1002/cpp.2146. Epub 2017 Sep 27.
OBJECTIVES: On the basis of the multidimensional model of the caregiving process, this study aimed (a) to compare the levels of quality of life (QoL) and psychological problems of children with short stature and the levels of caregiving stress and QoL of their parents, between diagnostic, treatment, and current height deviation groups, and (b) to examine the direct and indirect links, via caregiving stress, between children's psychosocial functioning and their parents' QoL. METHOD: The sample was collected in 5 European countries and comprised 238 dyads of 8- to 18-year-old children and adolescents with a clinical diagnosis of growth hormone deficiency or idiopathic short stature and one of their parents. The children completed self-report measures of height-related QoL (Quality of Life in Short Stature Youth Core Module) and psychological problems (Strengths and Difficulties Questionnaire); the parents reported on their own QoL (EUROHIS-QOL-8 Index) and caregiving stress (Quality of Life in Short Stature Youth Effects on Parents subscale). RESULTS: Children who were treated and who achieved normal height reported better QoL compared to those untreated and with current short stature. Parents of children with idiopathic short stature and current short stature presented greater caregiving stress than parents of children with growth hormone deficiency and achieved normal height. Children's better psychosocial functioning was indirectly associated with parents' better QoL, via less caregiving stress, and these links were invariant across diagnoses, treatment status, and current height deviation. CONCLUSIONS: These results suggest that, along with growth hormone treatments, multidisciplinary interventions in paediatric endocrinology should be family-centred, by targeting both the children's psychosocial functioning and the parents' stress, in order to improve individual and family adaptation.
目的:基于照顾者过程的多维模型,本研究旨在:(a)比较矮小症儿童的生活质量(QoL)和心理问题水平,以及其父母的照顾压力和 QoL 水平,在诊断、治疗和当前身高偏差组之间;(b)通过照顾压力,检验儿童的心理社会功能与其父母的 QoL 之间的直接和间接联系。
方法:该样本是在 5 个欧洲国家收集的,包括 238 对 8 至 18 岁的患有生长激素缺乏症或特发性矮小症的儿童和青少年及其父母。儿童完成了与身高相关的 QoL(矮小青少年生活质量核心模块)和心理问题(长处和困难问卷)的自我报告量表;父母报告了自己的 QoL(欧洲健康生活质量-8 指数)和照顾压力(矮小青少年生活质量对父母的影响子量表)。
结果:接受治疗且身高正常的儿童比未接受治疗且身高矮小的儿童报告的 QoL 更好。特发性矮小症和当前矮小症儿童的父母比生长激素缺乏症和身高正常的儿童的父母面临更大的照顾压力。儿童更好的心理社会功能通过较少的照顾压力与父母更好的 QoL 间接相关,这些联系在诊断、治疗状况和当前身高偏差方面是不变的。
结论:这些结果表明,除了生长激素治疗外,儿科内分泌学中的多学科干预措施应该以家庭为中心,既要针对儿童的心理社会功能,又要针对父母的压力,以改善个体和家庭的适应能力。
Clin Psychol Psychother. 2017-9-27
Health Qual Life Outcomes. 2016-5-17
Pediatrics. 2005-6
J Clin Psychol Med Settings. 2014-12
Int J Environ Res Public Health. 2023-8-11