Assistant Professor of Professional Practice Texas Christian University Fort Worth, Texas
Identify factors that impact food-related quality of life in families after pediatric inflammatory bowel disease diagnosis.
Background: Quality of life is reduced in pediatric patients with inflammatory bowel disease (IBD) because of the burden of disease management. Food-related quality of life (FRQOL), described as achieving adequate nutrition, deriving pleasure, and maintaining social activities through eating and drinking, may be an important mediating factor, but there is limited research in the pediatric population.
Methods: Semi-structured interviews were completed with 10 parents of a child with IBD. Thematic analysis of the interview data included steps to ensure trustworthiness, and Family Systems Theory was the interpretive framework.
Results: Four main themes emerged: 1) ambiguity in the perception of food/eating in IBD, 2) challenges related to food/eating after IBD diagnosis, 3) resilience when coping with and adapting to challenges, and 4) the parental perspective of FRQOL. Both positive and negative FRQOL were reflected in the family experiences. Support from various sources contributed to their resiliency. Ambiguity in the perception of food and eating presented a major challenge and impacted eating experiences. Parents felt that medical providers disregarded dietary treatment, which can create a situation of conflict between family members and complicate attempts at behavioral change.
Conclusion: Parents expect their medical provider to acknowledge and address diet after IBD diagnosis, and desire shared decision-making related to food and medication. Medical providers need to support the unique dietary goals and needs of each family to support optimal FRQOL. Discussion regarding diet should include all family members (especially the child with IBD). Continued research on FRQOL in the pediatric IBD population is warranted.