Health-Related Quality of Life, Stress, Caregiving Burden and Special Needs of Parents Caring for a Short-Statured Child—Review and Recommendations for Future Research

Lea Lackner, Julia Quitmann, Kaja Kristensen and Stefanie Witt ()
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Lea Lackner: Department of Medical Psychology, Center for Psychosocial Medicine, University Medical Center Hamburg-Eppendorf, Martinistraße 52, W26, 20246 Hamburg, Germany
Julia Quitmann: Department of Medical Psychology, Center for Psychosocial Medicine, University Medical Center Hamburg-Eppendorf, Martinistraße 52, W26, 20246 Hamburg, Germany
Kaja Kristensen: Department of Medical Psychology, Center for Psychosocial Medicine, University Medical Center Hamburg-Eppendorf, Martinistraße 52, W26, 20246 Hamburg, Germany
Stefanie Witt: Department of Medical Psychology, Center for Psychosocial Medicine, University Medical Center Hamburg-Eppendorf, Martinistraße 52, W26, 20246 Hamburg, Germany

IJERPH, 2023, vol. 20, issue 16, 1-19

Abstract: Children with short stature can experience a range of burdens due to their chronic condition. However, little is known about parents’ experiences dealing with their child’s short stature and the potential caregiving burdens and concerns they may face. We aim to review the literature on health-related quality of life (HRQOL), caregiving burden, and special needs among parents caring for a child with isolated growth hormone deficiency (IGHD) or idiopathic short stature (ISS). Using pre-defined inclusion and exclusion criteria, we systematically searched for literature using PubMed and Web of Science from its inception to December 2022. We identified 15 articles assessing HRQOL, special needs, or caregiving burdens in parents of IGHD/ISS children. The main problems included concerns about the future, organizational issues, side effects from growth hormone treatment, and social stigmatization. Furthermore, two studies assessed parents’ special needs to cope with caregiving stress, mainly the dialogue between them and their families or parent support groups. This review outlines parental burdens, needs, and resources when caring for an IGHD/ISS child. Furthermore, it provides information about previously used measures appraising parents’ special needs and underlines the need for disease-specific measurements.

Keywords: health-related quality of life; stress; caregiving burden; special needs; parents; short-statured children (search for similar items in EconPapers)
JEL-codes: I I1 I3 Q Q5 (search for similar items in EconPapers)
Date: 2023
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