Who really decides? Feeding decisions 'made' by caregivers of children with cerebral palsy.
Lavanya Naidoo, Mershen Pillay, Urisha Naidoo
PMID 38572900WHAT IT FOUND
Caregivers described doctors telling them what to do, and speech therapists supporting decisions already made.
Extended family, God, money, transport, food and water shaped PEG feeding choices. These were experiences, not evidence that a method works.
Key findings
01Caregivers described doctors telling them what to do and leaving them passive in PEG decisions.
02Speech therapists were understood as supporting decisions already taken by doctors.
03Caregivers said extended family members and God were part of the decision-making process.
STILL TO COME
How it was doneWhat they foundWhat it means for SLPs
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What it does not show
The main study included only two caregivers, so the themes cannot be treated as a pattern across caregivers. All participants were recruited from one public hospital in Pietermaritzburg, which limits transferability. The authors note low participant variability and recruitment problems, including wrong contact details, missed follow-ups, financial barriers and conflicting appointments. Caregivers had to speak English or isiZulu and be actively involved in care, so other caregivers may not be represented. The study did not test a decision-making intervention or report child feeding outcomes.
The easy way to misread this
Do not read these themes as evidence that a collaborative decision-making model improves feeding outcomes. The study reports two caregivers' experiences at one hospital and does not test any intervention.