Psychological aspects of being a parent of an individual with Rett syndrome: A scoping review
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Rett syndrome (RTT) causes multiple disabilities with a lifelong need for substantial care, placing a tremendous lifelong responsibility on the parents. Parenting an individual with RTT can therefore be challenging. Research on the psychological aspects of parenting individuals with RTT is limited and unclear. We aimed to identify and map the existing literature on this subject.
Method
A scoping review was conducted with systematic searches in PubMed, PsycINFO and CINAHL.
Results
Eighteen studies were included. Negative and positive psychological aspects were described with the majority focusing on the negative. Three factors seemed to especially affect the parents: severity of the diagnosis, time (increasing age of parents or individual with RTT; years of caretaking), work-status of the mother.
Conclusions
Seemingly, parents are highly affected; however, the literature is scarce and has several gaps. Future research should include older parents, fathers, parents of individuals living in group homes, and positive aspects.
| Originalsprog | Engelsk |
|---|---|
| Artikelnummer | e13188 |
| Tidsskrift | Journal of Applied Research in Intellectual Disabilities |
| Vol/bind | 37 |
| Udgave nummer | 2 |
| Antal sider | 21 |
| ISSN | 1360-2322 |
| DOI | |
| Status | Udgivet - 2024 |
Bibliografisk note
Funding Information:
The study was partly funded by the Danish Parents Organization for Rett Syndrome.
Funding Information:
We thank Jane Hybschmann, PhD-scholar at the Department of Pediatrics and Adolescent Medicine, Copenhagen University Hospital, Rigshospitalet, for her valuable inputs in the development of this review and the search string. We also thank Janne Vendt, information specialist at the Medical Library, Copenhagen University Hospital, Rigshospitalet, for her contribution to the refinement and verification of the search strategy.
Publisher Copyright:
© 2024 The Authors. Journal of Applied Research in Intellectual Disabilities published by John Wiley & Sons Ltd.
ID: 379705386