Living with children who have coeliac disease: a parental perspective

This study explores how a child's coeliac disease (CD) influences the daily life of families because such knowledge can enhance the understanding of how to support family adjustment to a gluten-free diet (GFD).

We used an interpretative phenomenological approach, interviewing 20 parents of 14 children diagnosed with CD about their individual thoughts and beliefs.

Once parents know, especially when their children are young, they seem to have the capacity to rapidly adapt to GFD, mainly because they notice how quickly their children recover. Parents may have problems controlling how staff at daycare and at school complies with their information about a GFD.

To ensure that children with CD are given a GFD at daycare and school, it is necessary for municipalities to educate staff about the disease and to give them the prerequisites for serving a GFD. There is also a need of early identification of children who may have CD. When parents express their worries, not just at the hospital but also at the well-baby clinic and primary care units, supporting treatment could prevent children from suffering from inappropriate food.