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“She’ll be able to live independently… as long as I’m around”: The “lived” experience of parenting a child with 22q11.2 deletion syndrome in the transition to adulthood

Lookup NU author(s): Dr Jane Goodwin



This is the authors' accepted manuscript of an article that has been published in its final definitive form by Wiley-Blackwell Publishing Ltd, 2020.

For re-use rights please refer to the publisher's terms and conditions.


Background: 22q11.2 deletion syndrome (22q11DS) is the most common microdeletion syndrome. Parents of emerging adults with 22q11DS have an intense and ongoing involvement in their child's life. This study explores the lived experience of parents in relation to their child becoming independent and establishing intimate relationships. Method: Interpretative phenomenological analysis was used to explore the positive and negative experiences of five parents of emerging adults with 22q11DS. Results: Supervised independence overarched four subordinate themes. These themes highlighted the difficulties experienced by parents attempting to relinquish control whilst still experiencing a need to keep their child safe as their child negotiated a complex stage of life. Parents waited for “signs” from their child before initiating conversations about intimate relationships. Conclusions: These findings provide insight into the lived experience of parenting a child through the transition into adulthood, providing a catalyst for further research with the aim of facilitating better services for families.

Publication metadata

Author(s): Goodwin J, Swaab L, Campbell LE

Publication type: Article

Publication status: Published

Journal: Journal of Applied Research in Intellectual Disabilities

Year: 2020

Volume: 33

Issue: 3

Pages: 565-573

Print publication date: 01/05/2020

Online publication date: 09/01/2020

Acceptance date: 17/12/2019

Date deposited: 30/01/2020

ISSN (print): 1360-2322

ISSN (electronic): 1468-3148

Publisher: Wiley-Blackwell Publishing Ltd


DOI: 10.1111/jar.12700


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