Psychological aspects of being a parent of an individual with Rett syndrome: A scoping review

Author:

Larsen Jane Lunding1,Hansson Helena23,Bisgaard Anne‐Marie1,Stahlhut Michelle4

Affiliation:

1. Department of Pediatrics and Adolescent Medicine, Center for Rett Syndrome Copenhagen University Hospital, Rigshospitalet Copenhagen Denmark

2. Department of Pediatrics and Adolescent Medicine Copenhagen University Hospital, Rigshospitalet Copenhagen Denmark

3. Department of Clinical Medicine University of Copenhagen Copenhagen Denmark

4. Center for Clinical Research and Prevention Bispebjerg and Frederiksberg Hospital Copenhagen Denmark

Abstract

AbstractBackgroundRett 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.MethodA scoping review was conducted with systematic searches in PubMed, PsycINFO and CINAHL.ResultsEighteen 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.ConclusionsSeemingly, 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.

Publisher

Wiley

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