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

doi:10.1111/jocn.15077

Abstract

To explore the experiences of the families of young adults with intellectual disabilities at the point of transition from child to adult health services. 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. An interpretative qualitative design. 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. 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. 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. 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.

Highlights

There is an established body of research evidence regarding health transitions from child to adult health services for young people with a range of health conditions, including diabetes, epilepsy and cystic fibrosis (Sheehan et al, 2015; Camfield et al., 2017; Coyne et al, 2017)
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 iew planning, effective information sharing and communication and clear transition processes and guidelines
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 disability (ID)

Summary

Introduction

There is an established body of research evidence regarding health transitions from child to adult health services for young people with a range of health conditions, including diabetes, epilepsy and cystic fibrosis (Sheehan et al, 2015; Camfield et al., 2017; Coyne et al, 2017). All point to this period presenting challenges for the individual and their families, as a result of biological, sociological and psychological changes for the young person as well as significant changes in the organisation of their care. A recent systematic review on transitions from child to adult health care for young adults with ID identified a theme of “parents as advocates in emotional turmoil”

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