Experience of adolescents/young adults with chronic kidney disease and of their families during transition of care.
Júlia Rudzinski Roveri, Maiara Rodrigues Dos Santos, Ana Márcia Chiaradia Mendes-Castillo and 3 others
PMID 40548852WHAT IT FOUND
Families of young people with chronic kidney disease described moving to adult clinics as losing trusted pediatric relationships and fearing more distant care.
They wanted clear information, emotional support, and help letting adolescents speak for themselves.
Key findings
01Families reported insecurity, fear and sadness about moving on, especially when they lacked support and information.
02They described the adult clinic as having different routines and more distant, formal relationships.
03Caregivers described transferring treatment control to adolescents, but adolescents were not always emotionally ready for that responsibility.
STILL TO COME
How it was doneWhat they foundWhat it means for RNs
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What it does not show
The study was done in only one public nephrology service in Brazil, so the experiences may not fit other services or private care. Eight families and 14 people were interviewed, so the themes are not generalisable to all adolescents with chronic kidney disease. People with neurological or speech deficits and hospitalized patients were excluded, so the study may miss experiences of more complex or acutely unwell families. Each participant was interviewed once, for 30 to 40 minutes on average, so the study may not capture how feelings changed over time. Participants did not review the transcripts, so the analysis rests on the research team's interpretation of the interviews.
The easy way to misread this
Do not read this as proof that a structured transition plan improves kidney outcomes or adherence. The study reports what eight families said and observed at one public nephrology service, so it describes experience, not treatment effect.