Celiac is a social disease: Family challenges and strategies.

Abstract

Celiac disease is the most common autoimmune inherited disorder in the United States, affecting approximately 1% of the population. Little research exists on the impact of family processes on adherence to a gluten-free diet (GFD), the only treatment for celiac disease. The objective of this qualitative study was to examine the barriers that families with a celiac child face and the strategies they use to adhere to the recommended diet. In-depth interviews were conducted with 10 families with a child between the ages of 6 and 12 diagnosed with celiac disease. Grounded theory and narrative analysis were used to analyze interview transcripts. Social isolation and misunderstandings about celiac disease and the GFD emerged as the most significant barriers to diet adherence including the reproduction of traditional gender relations among parents. Diet adherence facilitators included various types of institutional and societal support and idiosyncratic family arrangements. Successful diet adherence strategies used by families included planning ahead and taking their own food to social functions. Family processes play a critical role in GFD adherence. Implications for health care clinicians working with families with a child with celiac disease are discussed.