Academic journal article The Qualitative Report

When Black and White Medicine Turns Gray: Exploring the Interplay and Meaning of Discoursing about Parenting a Child with a Complex Chronic Condition

Academic journal article The Qualitative Report

When Black and White Medicine Turns Gray: Exploring the Interplay and Meaning of Discoursing about Parenting a Child with a Complex Chronic Condition

Article excerpt

Today, one in four children in the United States is diagnosed with chronic illness (Children and Adolescent Health Measurement Initiative, 2016). Such conditions include diabetes, cancer, cerebral palsy, cystic fibrosis, heart disease and mental illness (e.g., eating disorders, depression). While each condition may vary in its severity, prevalence, or stigma, the rigorous caregiving demands placed on parents of these children has resulted in consistent reports of experiencing poor levels of quality of life, regardless of a child's specific diagnosis (Cohen, Vowles, & Eccleston, 2010). This is because parents must dramatically reconfigure their roles and responsibilities (e.g., balancing daily life alongside caregiving tasks; Haskell, Mannix, James, & Mayer, 2012) as they seek to become educated advocates (Rafferty & Sullivan, 2017) and serve as conversational proxies for their child (Goldsmith, Wittenberg-Lyles, Ragan, & Nussbaum, 2011).

An emerging population within pediatric chronic illness is young people diagnosed with complex chronic conditions (CCCs). CCCs are "any medical condition that can be reasonably expected to last at least 12 months (unless death intervenes) and to involve either several different organ systems or one organ system severely enough to require specialty pediatric care and probably some period of hospitalization in a tertiary care center" (Feudtner, Christakis, & Connell, 2000, p. 206). Today, approximately 10% of pediatric admissions are young people living with a CCC. The most frequent types of CCCs are cardiovascular, congenital, neuromuscular, respiratory, and oncologic (Simon et al., 2010).

Parents are the primary caregivers of children living with CCCs and must continuously negotiate their roles and responsibilities with managing their child's care (Rafferty, Hutton, & Heller, 2019). This task can be daunting as young people with CCCs have high rates of hospitalization, readmissions, use of technology-dependent devices, use of prescribed medications, and inpatient mortality rates (Simon et al., 2010). As such, many parents report feelings of uncertainty and negative emotions (e.g., fear, frustration; Barakat & Alderfer, 2011); they also experience recurrent sorrow as they watch their child struggle to achieve developmentally appropriate skills and milestones (e.g., learning to walk, attending school; Coughlin & Sethares 2017). In total, parents report spending an average of 30 hours per week tending to their child's medical needs (National Alliance for Caregiving & American Association for Retired People [AARP], 2009). Thus, parents who raise children with a CCC experience demands that go beyond the normal tasks of parenting (Daire, Munyon, Carlson, Kimemia, & Mitcham, 2011).

Alongside the labor associated with managing a child's CCC, parents must also discursively construct and sustain their family's new identity, functionality, and sense of normality (Canary, 2012; Hays & Colaner, 2016). "Normal," in particular, is a weighted term suggesting that a societal standard exists for family structure and functioning (Buzzanell, 2010). By definition, parents with medically complex children defy these expected societal standards, and thus, must communicatively craft normalcy in new ways through every day talk and routines (Hays & Colaner, 2016). This can be seen as a type of "communication work," which is defined as the labor and resources for managing talk about illness (Donovan-Kicken, Tollison, & Goins, 2012). As parents talk about their child's illness, it is likely that parents rely upon discourse-dependent practices when constructing their new personal and family identity. Thus, for this research study, we analyzed parents' talk about caregiving for their medically complex child and the larger proximal (i.e., within a relationship or interaction) and distal (i.e., larger cultural meanings) already-spoken discourses that are evident within parents' talk. …

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