Increasing “patient engagement” has become a priority for health care organizations and policy-makers seeking to reduce cost and improve the quality of care. While concepts of patient engagement have proliferated rapidly across health care settings, little is known about how health care providers make use of these concepts in clinical practice. This paper uses 20 months of ethnographic and interview research carried out from 2015 to 2016 to explore how health care providers working at two public, urban, safety-net hospitals in the United States define, discuss, and assess patient engagement. We investigate how health care providers describe engagement for high cost patients—the “super-utilizers” of the health care system—who often face complex challenges related to socioeconomic marginalization including poverty, housing insecurity, exposure to violence and trauma, cognitive and mental health issues, and substance use. The health care providers in our study faced institutional pressure to assess patient engagement and to direct care towards engaged patients. However, providers considered such assessments to be highly challenging and oftentimes inaccurate, particularly because they understood low patient engagement to be the result of difficult socioeconomic conditions. Providers tried to navigate the demand to assess patient engagement in care by looking for explicit positive and negative indicators of engagement, while also being sensitive to more subtle and intuitive signs of engagement for marginalized patients.
IntroductionCurrently, the United States (U.S.) recommends that infants born to women living with HIV (WLHIV) be fed formula, whereas many low‐resource settings follow the World Health Organization's recommendation to exclusively breastfeed with ongoing antiretroviral therapy. Evidence on infant feeding among WLHIV in high‐resource countries suggest that these contrasting recommendations create challenges for providers and patients. Our study used multiple methods to understand providers’ infant feeding perspectives on caring for their pregnant and post‐partum WLHIV in the U.S.MethodsWe sent a survey (n = 93) to providers across the U.S. who have cared for WLHIV. A subset of survey participants opted into a follow‐up qualitative interview (n = 21). These methods allowed us to capture a broad understanding of provider attitudes via the survey and more nuanced qualitative interviews. The study was completed prior to an updated breastfeeding section of the U.S. Perinatal Guidelines.ResultsThe majority of providers (66.7%) discussed infant feeding intent with their patients using open‐ended questions. Many also discussed alternative feeding methods (37.6%) and disclosure avoidance strategies (34.4%). Over 75% (95% confidence interval (CI): 65.1 to 84.2) of participants reported that a WLHIV asked if she could breastfeed her child, and 29% (95% CI 20 to 40.3) reported caring for a patient who breastfed despite recommendations against breastfeeding. Providers reported that their patients’ primary concern was stigma associated with not breastfeeding (58%), while providers were primarily concerned about medication adherence during breastfeeding (70%). Through qualitative analysis, four overarching categories emerged that reflect providers’ sentiments, including (1) U.S. guidelines inadequately addressing WLHIV's desire to breastfeed; (2) negotiating patient autonomy amidst complex feeding situations; (3) harm reduction approaches to supporting WLHIV in breastfeeding; and (4) providers anticipating multilayered patient stigmatization.ConclusionsThe majority of provider respondents cared for a WLHIV who desired to breastfeed, and a third had WLHIV who breastfed despite recommendations against it. Providers found that the status of U.S. guidelines and their incongruity with WHO guidelines left them without adequate resources to support WLHIV's infant feeding decisions. Our findings provide important insight to inform professional associations’ discussions about public health policy as they consider future directions for infant feeding guidelines among WLHIV.
Our paper explores how legal status stratification shapes the health and health care of low-income patients with chronic illnesses in the U.S. healthcare safety net. Drawing on data from over two years of ethnographic fieldwork at urban safety-net clinics, we examine e fforts by Complex Care Management (CCM) teams to stabilize patients with uncontrolled chronic illnesses through primary care-integrated support. We show that stratified citizenship and geographic variability correspond to different possibilities for health care. We suggest an approach to immigration as a structural determinant of health that accounts for the complex, stratified, and changing nature of citizenship status. We also highlight how geographical differences and interactions among local, state, and federal policies support the notion that citizenship is stratified across multiple tiers with distinctive possibilities and constraints for health. While county-based health plans at each of the study sites include residents with varying legal status, lack of formal legal status remains a substantial obstacle to care. Many immigrants are unable to take full advantage of primary and specialty care, resulting in unnecessary morbidity and mortality. In some cases, patients have returned to their country of origin to die. While CCM teams provide an impressive level of support to assist immigrant patients in navigating healthcare and immigration bureaucracies, legal and geographic stratification limit their ability to address broader aspects of these patients’ social context.
The subjective nature of pain has always rendered it a point of entry for power and corresponding stratifying processes within biomedicine. The opioid crisis has further exacerbated these challenges by increasing the stakes of prescribing decisions for providers, which in turn has resulted in greater treatment disparities. Using the theoretical frame of cultural health capital (CHC) to account for these disparities in pain management as they unfold at both the macro- and the microlevel, we present findings from an interdisciplinary study of two complex care management programs in urban safety-net hospitals that serve high-utilizing patients. CHC, which considers the ways in which patient-provider interactions reflect and often reinforce broader social inequities, allows for a consideration of power as it circulates through and beyond the patient-provider encounter. Within the current sociopolitical era of pain management, attention must be paid to the stratifying processes that structure how suffering is addressed.
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