Qualitative Analysis of Pediatric Patient and Caregiver Perspectives After Recent Diagnosis With Inflammatory Bowel Disease.

Purpose: A diagnosis of a chronic illness is a life-altering experience for a child and his or her family. The purpose of this study was to elicit children and parent perspectives following a diagnosis of Inflammatory Bowel Disease (IBD).

Design & Methods: A qualitative description design was employed. Eighteen patients were recruited from a Pediatric IBD Clinic in Western Canada. Interviews were used to gather perceptions, opinions, and attitudes from children and their parents. Transcriptions of the interviews were analyzed using a qualitative content analysis.

Results: Four themes were identified: perspective of diagnosis, roles in care and decision-making, sharing the diagnosis, and treating the disease. Children and parents expressed varied emotions in response to diagnosis. Families articulated the desire to become more active members in the decision-making process on treatment choices. While using conventional medical therapy was seen as an appropriate choice for short-term therapy, many parents hoped that more non-conventional and alternative therapies could be used in the future.

Conclusion: Healthcare providers need to provide excellent education on the disease process, treatment options, and the use of CAM therapy in IBD, while at the same time supporting children and parent's voices in treatment decisions.

Practice Implications: Improvement strategies need to be implemented to allow families to feel that they have a voice when making decisions regarding treatment options. Families need to be educated and supported on the use of CAM therapies in IBD.