Exploring Informational Needs of Parents of Children with Intestinal Failure: A Thematic Analysis

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 better understand the education needs of families of children with pediatric intestinal failure (IF) and how technology might be effectively leveraged to address these needs.We hypothesized families would benefit from an electronic education platform encompassing the aspects of medical and management knowledge required by parents.A qualitative methodology using thematic analysis (Braun & Clarke, 2006) was utilized.Purposeful sampling was adopted to recruit 10 parents/caregivers of children with IF who then participated in a 1:1 semi-structured interview.Interviews were recorded, transcribed and themes identified through open and focused coding.Four qualitative themes emerged: (1) reliable electronic or printed information resources relevant to their child's unique needs are lacking; (2) educational program with in-person and hands-on learning is 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.This study revealed that parents of children with IF have high informational and educational needs and sought information beyond what they received.Participants stressed the importance of their informational needs related to practical day-to-day management rather than medical knowledge.Although digital resources were considered valuable, a blended approach of care team discussions and electronic tools was preferred for receiving knowledge and skills.Parents' connections with other caregivers was also noted as important for practical day-to-day management information, as well as supporting their wellbeing.Gaining an understanding of parents' informational needs will assist in the creation of a digital education tool that is accessible, user-friendly, and emphasizes practical information.iii Other practice implications include developing additional strategies to enhance parental coping and resiliency to reduce the stress associated with the uncertainty of their child's diagnosis.