Abstract: Parents’ Communication Work in the Management of Life-threatening Food Allergies

◆ Jennifer J. Bute, Indiana University Purdue University Indianapolis
◆ Clarissa Bowers, Indiana University Purdue University Indianapolis
◆ Daniel Park, University of Maryland

The National Academies of Sciences, Engineering, and Medicine (NASEM, 2017) has identified life-threatening food allergies as a critical public health issue that significantly affects quality of life for patients and their families. As many as 15 million Americans have food allergies, including 1 in 13 U.S. children (NASEM, 2017). Despite the prevalence of this potentially fatal condition, no FDA-approved treatments exist, with the exception of epinephrine autoinjectors used in the event of a reaction. Parents of food allergic children must manage their child’s condition through strict avoidance of the allergen(s) and constant vigilance for signs of an allergic reaction. Coping with a food allergy is an inherently social challenge that requires continuous communication when navigating all aspects of daily activity that involve food (e.g., meal planning, birthday parties, grocery shopping, holiday celebrations). In fact, food allergy parents have identified communicating with family and friends as one of the most difficult aspects of coping with their child(ren)’s food allergies (French, 2019), and patient advocacy organizations have explicitly called for more attention to these social challenges (Bute et al., 2018). Although food allergies have clear social and relational implications for parents of food allergic children, scholars have not examined the management of the food allergy experience using the lens of communication scholarship.
We drew on the concept of communication work (Donovan-Kicken, Tollison, & Goins, 2012; Iannarino, 2018) to explore how food allergy parents navigate disease management while negotiating and preserving valued relationships and identities. In their extension of Corbin and Strauss’s (1998) Theory of Illness Trajectories, Donovan-Kicken and colleagues (2012) argued that communication work is a distinct and taxing line of work required to manage chronic illness. Communication work can entail a host of communicative tasks, including sharing information, topic avoidance, solicitation of social support, and identity management (Donovan-Kicken et. al, 2012; Iannarino, 2018).
Through interviews with 26 parents of food allergic children, we explored how parents use communication in everyday talk with spouses, relatives, and friends to keep children safe and prevent allergic reactions. Our results revealed that parents used communication to legitimate food allergy, balance face-threats with identity and relational goals, and coordinate care with spouses. In addition, participants described interactions in which communication work was futile while noting how social network members can help to alleviate work. Based on these findings, we contend that communication work in the food allergy context is the primary form of illness work. In the absence of therapeutic options, communication is the foremost means of disease management for parents of food allergic children. The interpersonal talk required to manage a child’s food allergies is a prominent, essential, and often cumbersome feature of parenting food allergic children. Miscommunication and refusals to accommodate food allergies put children at risk and can damage relationships. We maintain that applying the lens of communication work in the food allergy context extends previous research that designated communication work as a distinct form of work and aids in understanding the communication facilitators and barriers that future interventions should address.