Stuck in transit: A qualitative study of the transitional care needs of young people with epilepsy and juvenile idiopathic arthritis.
Neil Wilson, Karen Whittaker, Janine Arnott and 3 others
PMID 35235476WHAT IT FOUND
Young people with epilepsy or juvenile idiopathic arthritis, parents and clinicians described transition as difficult when communication was abrupt, medication self-care was not prepared and adult teams started care from scratch.
Joint child and adult clinics were reported as reassuring.
Key findings
01Transferred young people described feeling unprepared for adult consultations and frustrated when they were not listened to.
02Clinicians linked readiness for adult care to young people knowing their condition and medication, and said some patients reached transition without this knowledge.
03Integrated child and adult transition clinics were described as helping young people trust adult staff and engage with care.
STILL TO COME
How it was doneWhat they foundWhat it means for RNs
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What it does not show
The sample was small, and only a few patients had already moved to adult services, so it may not represent all transition experiences. Young people with severe learning difficulties or autism were not recruited, so the findings may not apply to those groups. Commissioners were from child services only, which limits what can be said about adult service commissioning. The study reports experiences and perceptions; it did not measure whether these transition features changed health outcomes. Participants were recruited from hospitals in North West England, so transfer arrangements may differ elsewhere.
Declared interests
The authors declared no conflicts of interest. The research was supported by the National Institute for Health Research Applied Research Collaboration.
The easy way to misread this
Do not read the themes as evidence that joint clinics, age-appropriate communication or medication education improve transition outcomes. This was a qualitative interview study of a small purposive sample, and it reports what participants experienced and perceived, not what was tested.