Transition from child to adult care in an outpatient clinic for adolescents with juvenile idiopathic arthritis: An inductive qualitative study.
Line Raunsbæk Knudsen, Annette de Thurah, Merete Bjerrum
PMID 30338100WHAT IT FOUND
Adolescents with juvenile arthritis and their parents said transition to adult care felt abrupt when they were not told about separate nurse visits, no sedation for injections, older patients, and changing clinicians.
They wanted earlier preparation, a trusted contact, and time for daily life.
Key findings
01Participants reported inadequate preparation, including a sudden change from sedation for joint injections in child care to no sedation in adult care.
02They wanted a familiar contact person and consultations that covered daily life as well as examination.
03Parents felt excluded when their involvement dropped after transition, and adolescents said a lack of involvement made them feel they were not taken seriously.
STILL TO COME
How it was doneWhat they foundWhat it means for RNs
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What it does not show
Only three adolescents and three parents were interviewed, so the findings cannot be expected to represent all adolescents with juvenile idiopathic arthritis or their parents. The interviews took place 1 to 5 years after transition, so some details may be remembered differently. The study was done in a single Danish adult rheumatology outpatient clinic with particular arrangements for doctor and nurse consultations, so it may not fit other health services. The study interviewed adolescents and parents, not the health professionals who delivered the care, so it reports patient and family perspectives only.
Declared interests
The authors declared that there was no conflict of interest.
The easy way to misread this
Do not conclude that a structured transition programme improves clinical outcomes. This study interviewed three adolescents and three parents about remembered experiences and needs; it did not test an intervention or measure disease control, adherence, or disability.