Characterizing the Parental Perspective of Food-Related Quality of Life in Families after Pediatric Inflammatory Bowel Disease Diagnosis

Food-related quality of life is defined as achieving adequate nutrition, deriving pleasure, and maintaining social activities through eating and drinking. The objective of this qualitative study was to characterize the parental perspective about eating experiences and family functioning after diagnosis of inflammatory bowel disease in their child in order to describe how these experiences may impact food-related quality of life. Semistructured interviews were completed with 10 parents of a child with inflammatory bowel disease. Conventional content analysis was conducted with steps to ensure trustworthiness. Family Systems Theory was the interpretive framework. Ambiguous nutrition information emerged as the main theme. Families experienced various and conflicting viewpoints regarding the role of diet, which presented a challenge after diagnosis. Parents reported frustration regarding the lack of uniform and personalized nutrition guidance. Our results support that families desire shared decision-making in regard to medication and diet, which is an important clinical practice implication for the entire gastroenterology medical team. Understanding the challenges faced by families after a major medical diagnosis in a child provides insight into designing medical interventions that maintain optimal quality of life in families.