Verlagslink DOI: 10.3389/fendo.2023.1093983
Titel: Caregiving burden and special needs of parents in the care of their short-statured children : a qualitative approach
Sprache: Englisch
Autorenschaft: Lackner, Lea 
Quitmann, Julia Hannah  
Witt, Stefanie 
Herausgeber*In: Khattab, Ahmed 
Schlagwörter: caregiving burden; children and parents; health-related quality of life; idiopathic short stature; isolated growth hormonedeficiency; short stature
Erscheinungsdatum: 17-Mär-2023
Verlag: Frontiers
Zeitschrift oder Schriftenreihe: Frontiers in endocrinology 
Zeitschriftenband: 14
Zusammenfassung: 
Purpose: 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). Methods: Focused 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. Results: 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. Conclusion: 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.
URI: https://hdl.handle.net/20.500.12738/17188
ISSN: 1664-2392
Begutachtungsstatus: Diese Version hat ein Peer-Review-Verfahren durchlaufen (Peer Review)
Einrichtung: Universitätsklinikum Hamburg-Eppendorf 
Dokumenttyp: Zeitschriftenbeitrag
Hinweise zur Quelle: article number: 1093983
Enthalten in den Sammlungen:Publications without full text

Zur Langanzeige

Seitenansichten

18
checked on 03.04.2025

Google ScholarTM

Prüfe

HAW Katalog

Prüfe

Volltext ergänzen

Feedback zu diesem Datensatz


Diese Ressource wurde unter folgender Copyright-Bestimmung veröffentlicht: Lizenz von Creative Commons Creative Commons