Caregivers of children with intestinal failure (IF) must make tough decisions in the absence of a clear optimal alternative. Providers help in decision-making but frequently lack understanding about caregiver views. The study investigated how caregivers of children with IF prefer to make decisions using anaemia therapy as a focus point. The objective was to provide knowledge to help providers make decisions. Researchers performed 12 half-hour semistructured interviews with parents of children with IF. The interview questions focused on general decision-making as well as the particular of iron supplementation, including significant considerations and stakeholders in decision-making. The interviews were transcribed verbatim. The transcripts and inductively generated themes were coded by two investigators.
In terms of decision-making, four themes were discovered. They included the quest for trustworthy, accurate, and positive information; the role of caregivers on the medical team; caregiver-medical team interactions; and effective communication. Anemia therapy themes included: identifying anaemia through bloodwork; proactive supplementing; customised regimens; and stressing safety and convenience. Understanding caregiver opinions on anaemia therapy in paediatric IF helps to identify areas for systematic quality improvement.
