Transition from child to adult health services: A qualitative study of the views and experiences of families of young adults with intellectual disabilities

Michael Brown*, Anna Higgins, Juliet MacArthur

*Corresponding author for this work

Research output: Contribution to journalArticle

Abstract

Aims and objectives: To explore the experiences of the families of young adults with intellectual disabilities at the point of transition from child to adult health services. Background: The population of people with intellectual disabilities is changing rapidly, with young people with increasingly complex needs surviving into adulthood and requiring transition from child to adult health services. Design: An interpretative qualitative design. Methods: Semi-structured interviews were held with ten family carers of young adults with intellectual disabilities and complex care needs, who were in the process of or had recently completed a transition from child to adult health services in Scotland. Data were analysed using thematic analysis. The COREQ checklist was used. Results: Transition emerged as a highly emotional and challenging period for family carers. Their experiences were captured in five main themes: “a deep sense of loss,” “an overwhelming process,” “parents making transitions happen,” “a shock to the adult healthcare system” and “the unbearable pressure.” Nurses were often seen as instrumental to counteracting some of these challenges. Conclusions: There is an urgent need to respond to the challenges experienced by carers at the point of transition and beyond, by ensuring early and coordinated planning, effective information sharing and communication and clear transition processes and guidelines. A person-centred and family-centred approach is required to minimise negative impact on the health and well-being of the young adult with intellectual disabilities and their carers. Relevance to clinical practice: Registered nurses have a key role in providing information and support, along with coordinating care at the time of transition from child to adult health services for young adults with complex intellectual disabilities. It is vital that their input is person-centred and responds effectively to the expert knowledge of family carers, while at the same time ensuring their needs for information and support are also addressed.

Original languageEnglish
Pages (from-to)195-207
Number of pages13
JournalJournal of Clinical Nursing
Volume29
Issue number1-2
DOIs
Publication statusPublished - 14 Oct 2019

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Keywords

  • carers
  • complex needs
  • Intellectual disabilities
  • nursing
  • qualitative research
  • transition

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