IDEAS home Printed from https://ideas.repec.org/a/zbw/espost/313070.html
   My bibliography  Save this article

Down syndrome or Rett syndrome in the family: Parental reflections on sibling experience

Author

Listed:
  • Gray, Caitlin
  • Leonard, Helen
  • Wong, Kingsley
  • Reed, Sally
  • Schmidt, Kate
  • Skoss, Rachel
  • Li, Jianghong
  • Salt, Alison
  • Bourke, Jenny
  • Glasson, Emma J.

Abstract

Background: Siblings of children with intellectual disability have unique family experiences, varying by type of disability. Methods: Parents of children with Down syndrome (156) or with Rett syndrome (149) completed questionnaires relating to sibling advantages and disadvantages, experiences of holidays and recreation, and perceived availability of parental time. Qualitative responses were analysed using thematic analysis. Results: Positive personality traits, an optimistic outlook, enhanced skills, and rich relationships were strong and consistent parental perceptions for siblings in both disability groups. Parents of children with Rett syndrome were more likely to rank themselves lower on time availability, and to report sibling difficulties with social engagement and family holidays. Conclusions: Parental responses appeared to be influenced by disability type, and reflective of child capabilities. Perceptions of sibling experience should be supplemented by data collected directly from siblings to fully understand their unique perspective, and the ways in which their experiences could be enhanced.

Suggested Citation

  • Gray, Caitlin & Leonard, Helen & Wong, Kingsley & Reed, Sally & Schmidt, Kate & Skoss, Rachel & Li, Jianghong & Salt, Alison & Bourke, Jenny & Glasson, Emma J., 2024. "Down syndrome or Rett syndrome in the family: Parental reflections on sibling experience," EconStor Open Access Articles and Book Chapters, ZBW - Leibniz Information Centre for Economics, vol. 49(1), pages 11-24.
    • Handle: RePEc:zbw:espost:313070
    DOI: 10.3109/13668250.2023.2225353
    as

    Download full text from publisher

    File URL: https://www.econstor.eu/bitstream/10419/313070/1/Full-text-article-Gray-et-al-Down-syndrome.pdf
    Download Restriction: no
    File URL: https://libkey.io/10.3109/13668250.2023.2225353?utm_source=ideas
    LibKey link: if access is restricted and if your library uses this service, LibKey will redirect you to where you can use your library subscription to access this item
    ---><---

    References listed on IDEAS

    as
    1. Christian Gilissen & Jayne Y. Hehir-Kwa & Djie Tjwan Thung & Maartje van de Vorst & Bregje W. M. van Bon & Marjolein H. Willemsen & Michael Kwint & Irene M. Janssen & Alexander Hoischen & Annette Sche, 2014. "Genome sequencing identifies major causes of severe intellectual disability," Nature, Nature, vol. 511(7509), pages 344-347, July.
    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.
    1. Dragojlovic, Nick & Kopac, Nicola & Borle, Kennedy & Tandun, Rachel & Salmasi, Shahrzad & Ellis, Ursula & Birch, Patricia & Adam, Shelin & Friedman, Jan M. & Elliott, Alison M. & Lynd, Larry D., 2021. "Utilization and uptake of clinical genetics services in high-income countries: A scoping review," Health Policy, Elsevier, vol. 125(7), pages 877-887.
    2. Matthew D Shirley & Laurence Frelin & José Soria López & Anne Jedlicka & Amanda Dziedzic & Michelle A Frank-Crawford & Wayne Silverman & Louis Hagopian & Jonathan Pevsner, 2016. "Copy Number Variants Associated with 14 Cases of Self-Injurious Behavior," PLOS ONE, Public Library of Science, vol. 11(3), pages 1-16, March.
    3. Arthur S. Lee & Lauren J. Ayers & Michael Kosicki & Wai-Man Chan & Lydia N. Fozo & Brandon M. Pratt & Thomas E. Collins & Boxun Zhao & Matthew F. Rose & Alba Sanchis-Juan & Jack M. Fu & Isaac Wong & X, 2024. "A cell type-aware framework for nominating non-coding variants in Mendelian regulatory disorders," Nature Communications, Nature, vol. 15(1), pages 1-26, December.
    4. Dang Ton Nguyen & Hai Ha Nguyen & Thuy Duong Nguyen & Thi Thanh Hoa Nguyen & Kaoru Nakano & Kazuhiro Maejima & Aya Sasaki-Oku & Van Ba Nguyen & Duy Bac Nguyen & Bach Quang Le & Jing Hao Wong & Tatsuhi, 2018. "Whole Genome Sequencing of a Vietnamese Family from a Dioxin Contamination Hotspot Reveals Novel Variants in the Son with Undiagnosed Intellectual Disability," IJERPH, MDPI, vol. 15(12), pages 1-11, November.

    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:zbw:espost:313070. 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: ZBW - Leibniz Information Centre for Economics (email available below). General contact details of provider: https://edirc.repec.org/data/zbwkide.html .

    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.