Decision-Making Involvement, Self-Efficacy, and Transition Readiness in Youth With Sickle Cell Disease.
Maureen Varty, Barbara Speller-Brown, Bonnie J Wakefield and 3 others
PMID 34469415WHAT IT FOUND
In 50 young people with sickle cell disease and their caregivers, higher confidence in managing the disease and asking for information were linked to feeling ready for adult care.
But expressing opinions more was linked to less readiness and more taking charge of care.
Key findings
01In 50 completed family and young person pairs, higher confidence in managing sickle cell disease was associated with higher young-person-reported transition readiness.
02Young people who reported asking for information more often also reported more transition readiness.
03Young people who reported offering opinions more often reported more health care responsibility but less transition readiness.
STILL TO COME
How it was doneWhat they foundWhat it means for RNs
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What it does not show
The main measures were self-report, so young people or caregivers may have over or under reported confidence, decision-making, or readiness. Recruitment came from one large urban pediatric hospital with an established transition education program, so results may not apply to rural clinics or clinics without such programs. Some approached families did not complete, including young people admitted for pain or feeling unwell, so the sample may miss more severe or less stable cases. There was no good measure of poverty, so social disadvantage may not have been captured. The authors say longitudinal studies are needed to understand whether these factors affect outcomes after transition.
Declared interests
The authors reported no conflicts of interest.
The easy way to misread this
Do not conclude that making young people speak up will make them feel ready for adult care. The study measured associations, and more expressing opinions was linked to lower readiness, not higher.