‘A confident parent breeds a confident child’: Understanding the experience and needs of parents whose children will transition from paediatric to adult care

Karen L. Shaw*, Lydia Baldwin, Gemma Heath

*Corresponding author for this work

Research output: Contribution to journalArticlepeer-review

Abstract

Transitional care for young people with long-term conditions emphasizes the importance of supporting parents, particularly in relation to promoting adolescent healthcare autonomy. Yet, little practical guidance is provided, and transitional care remains suboptimal for many families. This study aimed to examine how parents understand and experience their caregiving role during their child’s transition to adult services, to identify parents’ needs, and to inform service improvements. Focus groups were undertaken with parents of young people with brittle asthma, osteogenesis imperfecta, or epilepsy. Data were analysed using interpretative phenomenological analysis. Participants (n = 13) described how their parenting roles extended beyond what they consider usual in adolescence. These roles were presented as time consuming, stressful, and unrelenting but necessary to protect children from harm in the face of multiple risks and uncertainties. Such protective strategies were also perceived to hinder adolescent development, family functioning, and their own development as midlife adults. Finding a balance between protecting immediate health and long-term well-being was a major theme. Participants called for improved support, including improved service organization. Recommendations are provided for working with parents and young people to manage the risks and uncertainties associated with their condition, as part of routine transitional care.

Original languageEnglish
Pages (from-to)305-319
Number of pages15
JournalJournal of Child Health Care
Volume25
Issue number2
Early online date30 Jun 2020
DOIs
Publication statusPublished - Jun 2021

Bibliographical note

Publisher Copyright:
© The Author(s) 2020.

Copyright:
Copyright 2021 Elsevier B.V., All rights reserved.

Keywords

  • chronic disease
  • focus groups
  • Parents
  • transitional care

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