Abstract
While this book was researched and written before the Covid-19 pandemic, the focus and the insights could not be more timely. Reading this book in the summer of 2020 felt particularly telling, as many of the cracks in the US health care system have become more painfully obvious. The American system’s reliance on employer-based health care proves even more questionable as people have lost their jobs at a time where health care coverage is a life or death benefit. The pandemic came at a time when, as a country, we are losing ground in the mission to get all citizens access to insurance following the current administration’s strategic political efforts to undermine the Affordable Care Act. Finally, the pandemic also brought greater attention to the racial and ethnic disparities in health access and health outcomes, most of which lead back to systemic racism. This book highlights the health care experiences of people from Jackson Homes, which is a public housing development in a low-income majority Black community in a large US city. This extensive qualitative study mixes participant observation with in-depth interviews conducted from 2010–2013 and follow ups in 2014–2015 (which captures behaviors before and after the implementation of the ACA). She talks with both the community members of Jackson Homes and physicians who provide health care to this community. The primary aim of this book is to uncover the features of the formal-informal hybrid health care system through which people of lower income groups seek to manage their health. This leads to additional aims of better understanding how poor urban residents acquire health resources needed to survive and how social networks influence health. Raudenbush makes a careful distinction that what she is studying when she talks about an informal system of health care is not alternative or complementary care (such as cultural remedies to managing health), but instead seeking western, clinical health care resources through informal means.
Raudenbush proposes that many people who face barriers to accessing health care operate within a formal-informal hybrid health care system. This system is one in which people who are disproportionately likely to have health concerns patch together survival health care from intermittent engagement with the formal system (through visits to the Emergency Department, public hospitals, and community health centers) and by relying on an informal system (comprised of resources available through their social networks, such as sharing prescriptions with a family member, buying medical supplies from a friend of a friend, etc.). For example, the case that opens the book highlights the story of Latonda who lost health insurance after leaving a job with good health care due to her husband’s death. As she could not afford the cost of doctor’s visits and medicine for her hypertension, fibroids, depression, and high-cholesterol, she drew on a network of people who cared for her and whom she cared for to acquire prescription medicine and to manage her conditions. While that informal system allowed her to safeguard resources and survive for a time, she eventually died a premature death, too late in accessing the formal system to treat her conditions more effectively.
Traditional barriers to care center on a lack of resources, and Raudenbush captures the lived experiences of people not having health insurance, money for out-of-pocket costs (co-pays and prescriptions), transportation, nor time to seek care. This book also highlights many of the barriers to care that are not included as consistently in the access literature such as a lack of trust in the system and a desire to be self-reliant. For example, prior negative experiences at public hospitals make residents reluctant to pursue care—participant Marjorie talks about both the long wait times at the public hospital and poor treatment from providers and staff that she feels is based on her status as an uninsured patient. Instead, individuals engage selective solidarity with others in their community to obtain healthcare resources, people use various sets of qualities to decide when and how to share health resources—including familial connections, length of time in the community, and a history of reciprocity. Most community members are selective about who they share resources with and from whom they seek resources.
Informal resource brokers are the intermediaries for individuals who face a wide variety of obstacles in seeking health care and in making their way through the formal health care system. Both breadth and depth of relationships matter greatly for an individual’s successful navigation of a formal-informal health care system. This book challenges the common argument that low-income people are socially isolated and that their social network lacks tangible resources. These ideas stem from a deficit model (as opposed to an asset model) that is not reflective of wider patterns found in the Jackson Homes community. Raudenbush repeatedly finds that the people of Jackson Homes are connected to each other in a wide range of ways.
Digging deeper into these lesser studied areas of health care experience, Raudenbush describes individual behaviors (which qualitative methods allow researchers to highlight so powerfully), but she does not allow the narrative or the theoretical frame to stop there. She pushes the explanation beyond individual actions to the social structures that have influenced the context, such as racism and class constraints. Raudenbush cautions against making sweeping generalizations from this book due to the nature of the study; still, the theory she develops is a solid framework to understand other US health care contexts. For example, one group missing from the initial framework of the book’s discussion of the US health care system are Native Americans who are entitled to health care from the US through treaties that led to the formation of the Indian Health Service. Even though this is a single-payer system, due to chronic underfunding and a historical lack of commitment from the federal government in centering the health of Native people as the top priority, the formal-informal hybrid health system framework Raudenbush develops would be helpful in better understanding Native communities’ health care strategies.
Much of the health services research on access to care takes a quantitative approach and focuses on patterns and strategies to reduce the number of people who are uninsured and identify groups of people facing disproportionate barriers to care. This book demonstrates how surveys are not always the right instrument for gaining critical knowledge. There is a gap between how people from Jackson Homes would fill out a survey about their social connections and the reality of their social embeddedness. I would argue that any one who teaches or researches access to care should engage with this text and the stories of the Jackson Homes community in particular to remind themselves and those they teach about the real people behind the statistics. This book makes clear that while it is vitally important to get health insurance to the masses, simply having access to health insurance is not enough to bridge the gap between people who need health care and the services available.