Designing a Genetics-Based Bibliotherapy Model for Children with Inborn Errors of Metabolism

Bibliotherapy is a psychotherapy technique utilized to teach individuals about concepts through the use of literature and the arts. The primary aim of this research was to examine how a bibliotherapy model could be applied to improve diet and treatment adherence for people affected with Inborn Errors of Metabolism. Prior to this research, no paper has proposed a tailored bibliotherapy approach for genetic conditions. Through analysis of the caregiver-child relationship and disclosure process and the perceived support needs of both caregivers and providers caring for children with IEMS, our goal was to propose a bibliotherapy model to improve adherence and understanding in late elementary-aged children between the ages of 6 and 10. Twenty-two individuals were interviewed through a semi-structured, virtual interview approach. Of the twenty-two participants, five were affected adults, five were caregivers to those with an IEM, four were caregivers and affected adults, and two were providers serving those with IEMs. Thematic analysis was conducted on the interview transcripts; five themes emerged. These themes included discussion of 1) barriers to compliance, treatment, and/or care plan, 2) compliance, 3) resources and support, 4) difficult topics to discuss with children, teens, and adults, and 5) the psychological impact. By conducting this research, we have identified the desired concepts and information to be included in a bibliotherapy model for parents and their children with IEMs.