Department of Medical Psychology, Center for Psychosocial Medicine, University Medical Center Hamburg-Eppendorf, Hamburg, Germany.
Front Endocrinol (Lausanne). 2023 Mar 17;14:1093983. doi: 10.3389/fendo.2023.1093983. eCollection 2023.
To explore caregiving burden, health-related quality of life (HRQOL), stress, and individual resources of parents in the care of children with isolated growth hormone deficiency (IGHD) or idiopathic short stature (ISS).
Focused interview analysis of previously, within the () project, conducted structured focus group discussions (n=7) with parents (n=33) of children with IGHD/ISS aged 4 to 18 years were performed.
26 out of the 33 parents reported mental stress due to their child's growth disorder. Social pressure and stigmatization were also mentioned as being demanding. Some parents reported having trouble with human growth hormone (hGH) treatment. Several parents wished for parent support groups with other like-minded parents of short-statured children.
For physicians, it is essential to understand the parents' caregiving burden, stress, and individual resources in caring for IGHD/ISS children. If an impaired HRQOL is detected, psychological intervention for these parents may be scheduled, and coping mechanisms may be discussed. Furthermore, it seems essential for parents to be educated by their healthcare provider about the possible side effects of hGH treatment or to know where to find evidence-based information about it.
探讨孤立性生长激素缺乏症（IGHD）或特发性身材矮小症（ISS）患儿父母的照顾负担、与健康相关的生活质量（HRQOL）、压力和个体资源。
对先前在（）项目中进行的结构性焦点小组讨论（n=7）进行焦点访谈分析，参与者为 4 至 18 岁 IGHD/ISS 患儿的父母（n=33）。
33 名父母中有 26 名报告说，由于孩子的生长障碍，他们感到精神压力。社会压力和污名化也被认为是具有挑战性的。一些父母报告说在接受人类生长激素（hGH）治疗方面存在困难。一些父母希望有一个由身材矮小儿童的父母组成的支持小组。
对于医生来说，了解照顾 IGHD/ISS 儿童的父母的照顾负担、压力和个体资源是很重要的。如果发现 HRQOL 受损，可能需要为这些父母安排心理干预，并讨论应对机制。此外，似乎有必要让父母从医疗保健提供者那里了解 hGH 治疗的可能副作用，或者了解在哪里可以找到关于它的循证信息。
