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

Jane Lunding Larsen; Helena Hansson; Anne-Marie Bisgaard; Michelle Stahlhut

doi:10.1111/jar.13188

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

Jane Lunding Larsen^*, Helena Hansson, Anne-Marie Bisgaard, Michelle Stahlhut

^*Corresponding author for this work

Abstract

BACKGROUND: 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.

Original language	English
Article number	e13188
Journal	Journal of applied research in intellectual disabilities : JARID
Volume	37
Issue number	2
Pages (from-to)	e13188
ISSN	1360-2322
DOIs	https://doi.org/10.1111/jar.13188
Publication status	Published - Mar 2024

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title = "Psychological aspects of being a parent of an individual with Rett syndrome: A scoping review",

abstract = "BACKGROUND: 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.",

author = "Larsen, {Jane Lunding} and Helena Hansson and Anne-Marie Bisgaard and Michelle Stahlhut",

note = "{\textcopyright} 2024 The Authors. Journal of Applied Research in Intellectual Disabilities published by John Wiley & Sons Ltd.",

year = "2024",

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doi = "10.1111/jar.13188",

language = "English",

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journal = "Journal of applied research in intellectual disabilities : JARID",

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publisher = "Wiley-Blackwell Publishing Ltd",

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T1 - Psychological aspects of being a parent of an individual with Rett syndrome

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AU - Larsen, Jane Lunding

AU - Hansson, Helena

AU - Bisgaard, Anne-Marie

AU - Stahlhut, Michelle

PY - 2024/3

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N2 - BACKGROUND: 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.

AB - BACKGROUND: 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.

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

Abstract

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