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

Research output: Contribution to journalArticlepeer-review

Authors

Colleges, School and Institutes

Abstract

Transitional care for young people with long-term conditions emphasises 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 care-giving role during their child’s transition to adult services, to identify parents’ needs and 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 mid-life adults. Finding a balance between protecting immediate health and long-term wellbeing
was a major theme. Participants called for improved support, including improved service organisation. 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.

Details

Original languageEnglish
JournalJournal of Child Health Care
Publication statusAccepted/In press - 30 Jun 2020

Keywords

  • Parents, Transitional Care, Chronic Disease, Focus Groups