“I Want You to Save My Kid!”

Abstract

Using data drawn from interviews and observations with 18 families whose children were diagnosed with life-threatening, often rare diseases, I examine how families accessed and negotiated medical care at a top 10-ranked university research hospital. Access to highly specialized and technologically advanced care was essential in these critical cases. Combining analysis of these high-stakes cases with recent work highlighting the interactional dynamics of care delivery, I show how families followed different paths to elite care and used different illness management strategies throughout the treatment process depending on their ability to mobilize what Janet Shim terms cultural health capital. These diverging illness management strategies reproduced inequality even at the top of the U.S. healthcare system by allowing some families to secure microadvantages throughout the illness experience. These findings suggest a complex interplay between structures of care delivery and families' illness management strategies and point to the need for broader conceptualizations of healthcare advantages.

Social support, flexible resources, and health care navigation

“…Patients who have more cultural health capital have cultural skills, knowledge, styles of interaction, and health related attitudes that are aligned with the values and preferences of clinicians (Shim, 2010). Building upon conceptual innovations advanced by cultural health capital theory (Shim, 2010) recent research has focused attention on the role of patients’ and clinicians’ cultural skills and values in generating inequalities in health care experiences (Chang, Dubbin & Shim, 2016; Dubbin, Chang & Shim, 2013; Gengler, 2014; Gage-Bouchard, 2017). These studies show that patients who display relevant medical knowledge, communication skills, a proactive stance towards health, self-discipline, and future orientation are able to leverage these attributes to have more optimal health care encounters (Gengler 2014; Chang et al 2016; Dubbin et al 2013; Lutfey & Freese 2005; Gage-Bouchard, 2017).…”

“…Therefore, the cultural health capital framework highlights the importance of both patient attributes, and also how those attributes are perceived and differentially rewarded within health care interactions as playing a critical role in contributing to differences in health care experiences (Shim, 2010). Building upon conceptual innovations advanced by cultural health capital theory (Shim, 2010) recent research has focused attention on the role of patients’ and clinicians’ cultural skills and values in generating inequalities in health care experiences (Chang, Dubbin & Shim, 2016; Dubbin, Chang & Shim, 2013; Gengler, 2014; Gage-Bouchard, 2017). Yet, examination of how social structural factors shape people’s abilities to build, refine, and leverage strategies for navigating the health care system have received less attention.…”

Citizen trust, administrative capacity and administrative burden in Pakistan’s immunization program

“…Judgemental comments of this nature regarding parenting decisions and styles, and the use of force to vaccinate children, are likely to turn parents against government workers and services (Reich, 2020). There are, of course, biases involved in such attitudes; wealthier parents are more likely to be treated with respect by health service providers (Reich, 2020;Gengler, 2014). Therefore, administrative burdens reinforce societal inequalities (Herd & Moynihan, 2018), reveal 'how marginalization is experienced and (re)produced' (Nisar, 2017, p. 3), and both contribute to and are shaped by levels of trust in the state.…”

Provider Bias in prescribing opioid analgesics: a study of electronic medical Records at a Hospital Emergency Department

“…Long-standing stereotypes about women’s lack of pain tolerance appear to bias doctors to both over-treat and undertreat women’s pain [ 4 , 20 ]. Preferences for patients who are culturally similar to doctors may lead doctors to reduce attention to the suffering of patients from lower socio-economic groups [ 11 , 16 , 21 , 22 ] thereby limiting doctors’ abilities to make informed diagnoses. Institutional constraints also play a role in doctors’ treatment decisions.…”