Parenting a child with chronic illness as they transition into adulthood: A systematic review and thematic synthesis of parents’ experiences

Gemma Heath, Albert Farre, Karen Shaw

Research output: Contribution to journalArticlepeer-review

66 Citations (Scopus)
412 Downloads (Pure)

Abstract

Objective: To understand how parents view and experience their role as their child with a long-term physical health condition transitions to adulthood and adult healthcare services. Methods: Five databases were systematically searched for qualitative articles examining parents’ views and experiences of their child’s healthcare transition. Papers were quality assessed and thematically synthesised. Results: Thirty-two papers from six countries, spanning a 17-year period were included. Long-term conditions were diverse. Findings indicated that parents view their child’s progression toward self-care as an incremental process which they seek to facilitate through up-skilling them in self-management practices. Parental perceptions of their child’s readiness, wellness, competence and long-term condition impacted on the child’s progression to healthcare autonomy. A lack of transitional healthcare and differences between paediatric and adult services served as barriers to effective transition. Parents were required to adjust their role, responsibilities and behaviour to support their child’s growing independence. Conclusion: Parents can be key facilitators of their child’s healthcare transition, supporting them to become experts in their own condition and care. To do so, they require clarification on their role and support from service providers. Practice Implications: Interventions are needed which address the transitional care needs of parents as well as young people.
Original languageEnglish
JournalPatient Education and Counseling
Early online date16 Aug 2016
DOIs
Publication statusE-pub ahead of print - 16 Aug 2016

Keywords

  • Qualitative research
  • Child health
  • Parents
  • Long-term conditions
  • Transition

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