Caregiving burden and special needs of parents in the care of their short-statured children – a qualitative approach

Frontiers in Endocrinology

Endocrinology

Stefanie Witt¹  Lea Lackner¹  Julia Hannah Quitmann¹ 

[1] Department of Medical Psychology, Center for Psychosocial Medicine, University Medical Center Hamburg-Eppendorf, Hamburg, Germany;

关键词: health-related quality of life;    short stature;    caregiving burden;    children and parents;    isolated growth hormone deficiency;    idiopathic short stature;   

DOI  :  10.3389/fendo.2023.1093983

 received in 2022-11-09, accepted in 2023-01-30,  发布年份 2023

来源: Frontiers

【 摘 要 】

PurposeTo 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).MethodsFocused interview analysis of previously, within the Quality of Life in Short Stature Youth (QoLISSY) project, conducted structured focus group discussions (n=7) with parents (n=33) of children with IGHD/ISS aged 4 to 18 years were performed.Results26 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.ConclusionFor 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.

【 授权许可】

Unknown   
Copyright © 2023 Lackner, Quitmann and Witt