TABLE 1.

Thematic summary of patient and family interviews

Factors/themes (with examples)	Considerations and impact on practice after discussion in workshop
Messaging from health care team
“Pharmacist said incidence of most side effects from steroids were 10% or lower”. Family opted for the steroid because they did not feel the efficacy of the EEN was explained	Need for multidisciplinary education and conviction; ensure accurate and consistent messaging Written information to ensure accurate recall by families
Parental assumptions and expectations
“at 14, no way would she do that” “12 is a difficult, in-between age. Maybe if he was younger or older he would (been convinced to) have tried the [formula].”	Importance of connecting parents with experienced parents Involve social work or health psychology
Social concerns
Integration into school, activities, not eating “EEN would be socially isolating” “patient became emotional about not eating (worried about missing the food he liked; being different from his friends)”	Importance of connecting patients to youth with EEN experience, use available resources (videos, camp/social experience)
Guilt
Parents felt that he had already been through so much that they did not want to upset him further “At 10 or 11, it was hard to imagine that he could only drink when his friends were eating”	Focus on benefits of EEN, not only challenges Importance of connecting parents with experienced parents Involve social work or health psychology
Child as the decision maker
“Parents have to respect the wishes of their children (even very young children). The option of a steroid was the only one our son wanted to look at, so we had to go with his wishes.” (Pt was 10 years old when EEN was offered) “You can’t make your teen do what they don’t want to do”	Be sure child is present and actively engaged in discussions regarding treatment The child is a key player in the decision making, but they are not the only player – parental involvement is also important; a difficult decision to make alone Engage supports such as peers – connect with patient who has been on EEN
Adaptation
“It seems so traumatic at first, but you have to look ahead. There are so many possibilities for a good outcome.” “it is hard, but it will get a lot better” “nervous but relieved [at decision to place NG tube]”. The tube was in for 10½ weeks… Stayed in; changed 3 times. Very successful. She gained weight.”	Have families share their experiences and strategies

EEN Exclusive enteral nutrition; NG Nasogastric