TY - JOUR
T1 - Waiting for care
T2 - Chronic illness and health system uncertainties in the United States
AU - Lee, Amanda A.
AU - James, Aimee S.
AU - Hunleth, Jean M.
N1 - Funding Information:
We would like to thank the people who participated in our study as well as the study staff: Miquela Ibrao, Sarah Humble, Sara Mohamed, Lindsey Manshack, and Liz Rolf. We further acknowledge colleagues who commented on earlier versions of this article, including Megan Carney and Dawn Pankonien, and the helpful guidance of the anonymous reviewers. This research was supported by funding from the National Institute for Minority Health and Health Disparities (R01MD010445).
Funding Information:
We would like to thank the people who participated in our study as well as the study staff: Miquela Ibrao, Sarah Humble, Sara Mohamed, Lindsey Manshack, and Liz Rolf. We further acknowledge colleagues who commented on earlier versions of this article, including Megan Carney and Dawn Pankonien, and the helpful guidance of the anonymous reviewers. This research was supported by funding from the National Institute for Minority Health and Health Disparities ( R01MD010445 ).
Publisher Copyright:
© 2020
PY - 2020/11
Y1 - 2020/11
N2 - Structures of power and inequality shape day-to-day life for individuals who are poor, imposing waiting in multiple forms and for a variety of services, including for healthcare (Andaya, 2018a; Auyero, 2012; Strathmann and Hay, 2009). Constraints, such as the age requirements for Medicare, losing employer-provided health insurance, or the bureaucracy involved in filing for disability often require people to wait to follow recommendations for medical treatments. In 2016–2017, we conducted 52 narrative interviews in St. Louis, a city with significant racial and economic health inequities and without Medicaid expansion. We interviewed people with one or more chronic illnesses for which they were prescribed medication and who identified as having difficulties affording their prescriptions. Throughout the interviews, participants frequently recounted 1) experiences of waiting for care, along with other services, and 2) the range of strategies they utilized to manage the waiting. In this article, we develop the concept of active waiting to describe both the lived experiences of waiting for care and the responses that people devise to navigate, shorten, or otherwise endure waiting. Waiting is structured into healthcare and other social services at various scales in ways that reinforce feelings of marginalization, and also that require work on the part of those who wait. While much medical and public health research focuses on issues of diagnostic or treatment delay, we conclude that this conceptualization of active waiting provides a far more productive frame for accurately understanding the emotional and physical experiences of individuals who are disproportionately poor and made to wait for their care. Only with such understanding can we hope to build more just and compassionate social systems.
AB - Structures of power and inequality shape day-to-day life for individuals who are poor, imposing waiting in multiple forms and for a variety of services, including for healthcare (Andaya, 2018a; Auyero, 2012; Strathmann and Hay, 2009). Constraints, such as the age requirements for Medicare, losing employer-provided health insurance, or the bureaucracy involved in filing for disability often require people to wait to follow recommendations for medical treatments. In 2016–2017, we conducted 52 narrative interviews in St. Louis, a city with significant racial and economic health inequities and without Medicaid expansion. We interviewed people with one or more chronic illnesses for which they were prescribed medication and who identified as having difficulties affording their prescriptions. Throughout the interviews, participants frequently recounted 1) experiences of waiting for care, along with other services, and 2) the range of strategies they utilized to manage the waiting. In this article, we develop the concept of active waiting to describe both the lived experiences of waiting for care and the responses that people devise to navigate, shorten, or otherwise endure waiting. Waiting is structured into healthcare and other social services at various scales in ways that reinforce feelings of marginalization, and also that require work on the part of those who wait. While much medical and public health research focuses on issues of diagnostic or treatment delay, we conclude that this conceptualization of active waiting provides a far more productive frame for accurately understanding the emotional and physical experiences of individuals who are disproportionately poor and made to wait for their care. Only with such understanding can we hope to build more just and compassionate social systems.
KW - Chronic illness
KW - Health inequalities
KW - Poverty
KW - Social services
KW - United States
KW - Waiting for care
UR - http://www.scopus.com/inward/record.url?scp=85089902427&partnerID=8YFLogxK
U2 - 10.1016/j.socscimed.2020.113296
DO - 10.1016/j.socscimed.2020.113296
M3 - Article
C2 - 32866715
AN - SCOPUS:85089902427
VL - 264
JO - Social Science and Medicine
JF - Social Science and Medicine
SN - 0277-9536
M1 - 113296
ER -