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.

Toward enteral nutrition for the treatment of pediatric Crohn disease in Canada: a workshop to identify barriers and enablers.

The treatment armamentarium in pediatric Crohn disease (CD) is very similar to adult-onset CD with the notable exception of the use of exclusive enteral nutrition (EEN [the administration of a liquid formula diet while excluding normal diet]), which is used more frequently by pediatric gastroenterologists to induce remission. In pediatric CD, EEN is now recommended by the pediatric committee of the European Crohn's and Colitis Organisation and the European Society for Paediatric Gastroenterology Hepatology and Nutrition as a first-choice agent to induce remission, with remission rates in pediatric studies consistently >75%. To chart and address enablers and barriers of use of EEN in Canada, a workshop was held in September 2014 in Toronto (Ontario), inviting pediatric gastroenterologists, nurses and dietitians from most Canadian pediatric IBD centres as well as international faculty from the United States and Europe with particular research and clinical expertise in the dietary management of pediatric CD. Workshop participants ranked the exclusivity of enteral nutrition; the health care resources; and cost implications as the top three barriers to its use. Conversely, key enablers mentioned included: standardization and sharing of protocols for use of enteral nutrition; ensuring sufficient dietetic resources; and reducing the cost of EEN to the family (including advocacy for reimbursement by provincial ministries of health and private insurance companies). Herein, the authors report on the discussions during this workshop and list strategies to enhance the use of EEN as a treatment option in the treatment of pediatric CD in Canada.