RESUMO
PURPOSE: Information seeking has been observed to be important for the coping and empowerment of parents of children with rare diseases. This study was conducted to understand the education needs of families of children with pediatric intestinal failure (IF) and how technology might be effectively leveraged to address these needs. DESIGN AND METHODS: A qualitative methodology using thematic analysis was utilized. Purposeful sampling was adopted to recruit 10 parents/caregivers of children with IF. Participants participated in a 1:1 semi-structured interview. Interviews were recorded, transcribed and themes identified through open and focused coding. RESULTS: Four themes emerged: (1) reliable electronic or printed information resources relevant to their child's unique needs were lacking; (2) an educational program with in-person and hands-on learning was preferred for transition to home; (3) practical and relatable information was valued over medical knowledge as children's needs evolved; and (4) creation of electronic resources would be useful for information seeking and sharing. CONCLUSION: To cope with the responsibilities of caring for a child with IF, participants sought information beyond what they received. Participants preferred a blended approach of care team discussions and electronic tools for receiving knowledge and skills. Parents' connections with other caregivers was important for practical day-to-day management information, as well as supporting their well-being. PRACTICE IMPLICATIONS: Development and implementation of accessible digital resources with emphasis on practical information is required. Beyond medical and practical informational needs, building resilience and supporting psychologic needs for parents/caregivers of children with IF emerged as important needs to address.
