IDEAS home Printed from https://ideas.repec.org/a/gam/jijerp/v20y2023i16p6558-d1215186.html
   My bibliography  Save this article

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

Author

Listed:
  • 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)

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.

Suggested Citation

  • Lea Lackner & Julia Quitmann & Kaja Kristensen & Stefanie Witt, 2023. "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," IJERPH, MDPI, vol. 20(16), pages 1-19, August.
    • Handle: RePEc:gam:jijerp:v:20:y:2023:i:16:p:6558-:d:1215186
    as

    Download full text from publisher

    File URL: https://www.mdpi.com/1660-4601/20/16/6558/pdf
    Download Restriction: no
    File URL: https://www.mdpi.com/1660-4601/20/16/6558/
    Download Restriction: no
    ---><---

    References listed on IDEAS

    as
    1. Meryl Brod & Lise Højbjerre & Suzanne Lessard Alolga & Jane F. Beck & Lars Wilkinson & Michael Højby Rasmussen, 2017. "Understanding Treatment Burden for Children Treated for Growth Hormone Deficiency," The Patient: Patient-Centered Outcomes Research, Springer;International Academy of Health Preference Research, vol. 10(5), pages 653-666, October.
    Full references (including those not matched with items on IDEAS)

    Most related items

    These are the items that most often cite the same works as this one and are cited by the same works as this one.

      Corrections

      All material on this site has been provided by the respective publishers and authors. You can help correct errors and omissions. When requesting a correction, please mention this item's handle: RePEc:gam:jijerp:v:20:y:2023:i:16:p:6558-:d:1215186. See general information about how to correct material in RePEc.

      If you have authored this item and are not yet registered with RePEc, we encourage you to do it here. This allows to link your profile to this item. It also allows you to accept potential citations to this item that we are uncertain about.

      If CitEc recognized a bibliographic reference but did not link an item in RePEc to it, you can help with this form .

      If you know of missing items citing this one, you can help us creating those links by adding the relevant references in the same way as above, for each refering item. If you are a registered author of this item, you may also want to check the "citations" tab in your RePEc Author Service profile, as there may be some citations waiting for confirmation.

      For technical questions regarding this item, or to correct its authors, title, abstract, bibliographic or download information, contact: MDPI Indexing Manager (email available below). General contact details of provider: https://www.mdpi.com .

      Please note that corrections may take a couple of weeks to filter through the various RePEc services.

      IDEAS is a RePEc service. RePEc uses bibliographic data supplied by the respective publishers.