Moral experiences of children with medical complexity: A participatory hermeneutic ethnography in Brazil.
Raíssa Passos Dos Santos, Mary Ellen Macdonald, Franco A Carnevale
PMID 36168769WHAT IT FOUND
Children with medical complexity resisted treatments aimed at normal development by crying, silence, or asking for changes.
Some school tasks and surgery decisions changed when adults listened.
Key findings
01Children resisted norm-focused care through crying, silence, non-conformity, and requests for changes.
02In one case, a physician asked the child about pain and leg opening, then postponed surgery.
03Children's distress was sometimes dismissed as expected for their condition, delaying diagnosis until an X-ray found a femur fracture and hip dislocation.
STILL TO COME
How it was doneWhat they foundWhat it means for PTsWhat it means for OTsWhat it means for SLPsWhat it means for RNs
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What it does not show
This is a qualitative study of eight children in one Brazilian setting, so the themes may not transfer to other health systems or cultures. The study reports experiences and examples, not outcomes, so it cannot show whether listening to children changes clinical safety or benefit. Children's views were often mediated by mothers, siblings, and researcher interpretation, especially for children whose communication was not verbal.
Declared interests
The authors declared no potential conflicts of interest. Funding was from the David McCutcheon Pediatric Palliative Care Doctoral Fellowship and Fonds de recherche du Québec - Santé.
The easy way to misread this
Do not read the surgery postponement or the nurse's actions as proof that listening to children prevents harm. This qualitative study describes experiences and examples; it did not test whether any practice change was effective or safe.