Caregiver Decision-making in Pediatric Intestinal Failure: A Qualitative Study Focused on Iron Deficiency Anemia

Background: Caregivers of children with intestinal failure (IF) face difficult decisions without a clear best alternative. Providers assist in decision-making but often lack knowledge of caregiver perspectives. Using decision-making around anemia treatment as a focal point, we explored how caregivers of children with IF prefer to make decisions. Our goal was to offer insight to guide providers as they assist in decision-making. Methods: We conducted 12 half-hour semistructured interviews with parents of children with IF. Interview questions addressed general decision-making and specifics of iron supplementation, including key factors and stakeholders in decision-making. Interviews were transcribed verbatim. Two investigators coded the transcripts and inductively derived themes. Results: Four themes were identified regarding decision-making. They involved the search for reliable, accurate, and positive information; the role of caretakers on the medical team; the relationships between caretakers and the medical team; and effective communication. Themes around anemia treatment included: identification of anemia by bloodwork; proactive supplementation; individualized regimens; prioritizing safety and convenience. Conclusions: Understanding caregiver perspectives regarding anemia treatment in pediatric IF identifies opportunities for systematic quality improvement.

Automated summary

The study found that caregivers of children with IF prioritize seeking reliable, accurate, and positive information during the decision-making process, and value the role of caregivers on the medical team and the relationships between caregivers and the medical team. Regarding anemia treatment, the key themes included identifying anemia by bloodwork, proactive supplementation, individualized regimens, and prioritizing safety and convenience.