Parental uncertainty about transferring their adolescent with congenital heart disease to adult care.
Åsa Burström, Mariela Acuna Mora, Maria Öjmyr-Joelsson and 7 others
PMID 30209810WHAT IT FOUND
Parents' uncertainty about moving their child with congenital heart disease to adult care varied widely.
Higher perceived adolescent readiness and lower parental involvement were linked to lower uncertainty. Thirty percent had not started thinking about transfer.
Key findings
01Mean parental uncertainty was 42.5, with 24% scoring 0-10 and 7% scoring 91-100.
02Parents who perceived greater adolescent transition readiness and lower parental involvement reported lower uncertainty.
03Twenty-six percent of mothers and 36% of fathers said they had not started thinking about the transfer.
STILL TO COME
How it was doneWhat they foundWhat it means for RNs
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What it does not show
The response rate was 35%, and no information was available about non-responders, so the parents who answered may not represent all eligible parents. The uncertainty scale was created for this study, is a single-item self-rating, and was only tested for face validity, so it is not a validated clinical measure. The paper reports mean uncertainty for 144 parents but included 351 parents, so the main uncertainty finding did not cover all participants in the same way. Because the study was cross-sectional, associations such as readiness and involvement with uncertainty cannot show which came first. The sample was restricted to Swedish-speaking, literate parents of adolescents without cognitive syndromes, heart transplant, or non-structural heart disease. Only univariate regression was reported, so the associations may not be independent of one another.
Declared interests
No conflicts of interest were declared. Funding came from the Swedish Heart and Lung Foundation and Forte, the Swedish Research Council for Health, Working Life and Welfare.
The easy way to misread this
Do not use the 0-100 uncertainty question as a validated assessment. It was developed for this study, is a one-item self-report, and only face validity was reported.