"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.
independence
interpretative phenomenological analysis
sexuality
transition
velo-cardio-facial syndrome
Journal
Journal of applied research in intellectual disabilities : JARID
ISSN: 1468-3148
Titre abrégé: J Appl Res Intellect Disabil
Pays: England
ID NLM: 9613616
Informations de publication
Date de publication:
May 2020
May 2020
Historique:
received:
18
01
2019
revised:
22
07
2019
accepted:
17
12
2019
pubmed:
11
1
2020
medline:
20
11
2020
entrez:
11
1
2020
Statut:
ppublish
Résumé
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. Interpretative phenomenological analysis was used to explore the positive and negative experiences of five parents of emerging adults with 22q11DS. 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. 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.
Sections du résumé
BACKGROUND
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
METHODS
Interpretative phenomenological analysis was used to explore the positive and negative experiences of five parents of emerging adults with 22q11DS.
RESULTS
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
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.
Types de publication
Journal Article
Langues
eng
Sous-ensembles de citation
IM
Pagination
565-573Informations de copyright
© 2020 John Wiley & Sons Ltd.
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