Exploring experiences of healthcare transition in neurodisability
Research type
Research Study
Full title
An exploratory study of the experiences of families and adult healthcare providers in the transition from paediatric to adult healthcare in young people with neurodisability and lung disease.
IRAS ID
343128
Contact name
Zoe Johnstone
Contact email
Sponsor organisation
University of Stirling
Duration of Study in the UK
1 years, 0 months, 0 days
Research summary
Approximately 70% of children young people (CYP) with neurodisability are expected to survive into adulthood However, the transition to adult healthcare providers is often poorly managed, resulting in disrupted continuity of care, diminished quality of life for the individuals and their families, health deterioration, increased morbidity and mortality, higher costs for both the health system and families, and low satisfaction levels. It is crucial to bridge the gap between paediatric and adult healthcare for CYP with neurodisability and respiratory diseases. The aim of this project is to explore the experiences of young people's primary care givers and adult healthcare professional’s experiences of transition to adult healthcare services in Scotland. It is hoped that a purposive sample of 15 families and 15 healthcare professionals from a range of Scottish NHS healthboards will be recruited. Single face to face or online semi-structured interviews will take place, at an agreed location convenient to the participant. With consent, interviews will be audiotaped and transcribed for analysis. Identities of participants will be anonymised. Thematic analysis will be used to identify reoccurring themes and interpreting experiences and attitudes. Participants will be recruited using Physiotherapy network groups within Scotland; known paediatric Physiotherapists who are involved in the care of CYP with neurodisability and respiratory disease; independent sector organisations, such as ARC Scotland (Action for Real Change), an organisation for people with learning disability, physical disability across Scotland; and social media posts on X (formerly Twitter). Participants will contact the primary investigator for more information They will have at least 24 hours to decide to participate. Inclusion criteria for the YP is defined as undiagnosed neurological conditions and/or a neurological condition resulting in a non-ambulant patient, all with additional respiratory comorbidities. Exclusion criteria includes cystic fibrosis, asthma, ambulatory patients, and those with long term ventilation needs.
REC name
East of England - Cambridge South Research Ethics Committee
REC reference
25/EE/0048
Date of REC Opinion
3 Apr 2025
REC opinion
Further Information Favourable Opinion