The Gluten-Free Family Ripple Effect: The Tides that Bond and the Tides that Divide
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EDITORIAL
The Gluten‑Free Family Ripple Effect: The Tides that Bond and the Tides that Divide Marisa G. Stahl1 · Jocelyn A. Silvester2
© Springer Science+Business Media, LLC, part of Springer Nature 2020
What does it mean to “break bread” in a gluten-free household? In a culture where gluten is so engrained in our rituals, the gluten-free diet pervades every aspect of celiac disease patients’ lives. The biomedical approach to healthcare teaches physicians to recognize a diagnosis and offer a treatment without much consideration about the psychosocial implications. For some diseases, particularly those requiring dietary interventions, the psychosocial repercussions of treatment may be even more impactful than the physiologic effects. One study demonstrated that patient perception of the burden of celiac disease was second only to end-stage renal disease [1]. While physicians often focus on the individual patient during the course of celiac disease management, successful implementation of a gluten-free diet prescription requires commitment not only of the patient, but also their family and social networks. Thus, a gluten-free lifestyle constitutes a significant financial and psychosocial burden for families [2, 3]. Dining out, food preparation, and entertainment are all intimate aspects of patients’ home lives and the family dynamic. Consequently, celiac disease is one of the few conditions for which treatment may reasonably entail putting unaffected family members on a partial broad elimination diet. Parents may also feel a unique obligation to provide their children with celiac disease with safe and adequate nutrition for growth and development. As a strict dietary intervention, these gluten-free burdens impact parents and siblings, but the ripple effect of the gluten-free diet on the family is often overlooked [4]. In this issue of Digestive Diseases and Sciences, Carrie Russo and co-authors present their bidirectional model of celiac disease treatment as a family affair in their article * Jocelyn A. Silvester [email protected] 1
Colorado Center for Celiac Disease, Children’s Hospital Colorado, Aurora, CO 80045, USA
Harvard Celiac Research Program, Boston Children’s Hospital, Boston, MA 0211, USA
2
entitled “The Impact of a Child’s Celiac Disease Diagnosis and Management on the Family” [5]. This team is commended for conducting a comprehensive mixed-methods study that involved semi-structured interviews, standardized questionnaires, and tours of the family home, which were typically led by the reference child with celiac disease. This methodology is particularly important in celiac disease research since a gluten-free diet is a complex intervention and since quantitative measures are inherently limited in what they capture. The use of mixed methods with all members of the family unit as the focus generated a treasure trove of data that included 74 photographs, 1313 min of recordings and responses to modified standardized measures of gluten-free diet adherence (i.e., Celiac Diet A
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