Abstract
Sherry N. Mong’s book Taking Care of Our Own: When Family Caregivers Do Medical Work shines a light on an invisible medical care labor force in the United States: family caregivers. Originally inspired by her experiences providing care for her son who has cystic fibrosis, Mong collects 62 in-depth interviews with family caregivers, home and community health care nurses, and other experts to understand the daily processes of family members providing medical care for children and adults. Mong is successful in this endeavor, and a great strength of the book is the focus on the complexities of providing medical care at home with in-depth considerations of structural limitations in the process, as well as exploring interactions with professional medical care workers. The book is accessible to a wide audience, from caregivers to researchers to practitioners.
Taking Care is innovative and timely because of the focus on the often-invisible cognitive and physical labor processes of unpaid care. Further, medical care provides a stark example of the extreme measures required of family and unpaid caregivers to provide for others, relative to other common forms of care such as transportation or household tasks (e.g., laundry). Because medical care takes on a variety of forms, for consistency Mong refines her definition of medical care to focus on Medicare’s definition of “skilled nursing care” (e.g., giving intravenous drugs, prescription drugs, injections, or tube feedings; changing dressings; and diabetes care). Despite similar sets of tasks among the sample, caregivers have a wide variety of experiences settling into their new roles. A majority do not have previous medical training and must quickly learn the ropes of providing medical care, including stressful and potentially dangerous emergency procedures.
A great strength of Taking Care is the dedication to showing that care experiences and processes are full of ambiguity, uncertainty, and a variety of emotional experiences, including both burden and devotion. Importantly, while professional medical care often happens in shifts between multiple people within a medical facility setting, once a care recipient transitions to the home, care is often done by one main caregiver, 24/7, within the family living space. Because of this, Taking Care notes the complexities in navigating and negotiating care roles with pre-embedded and established family roles, relationships, and responsibilities. Providing medical care can be more intimate and potentially dangerous than other common caregiving tasks, creating new roles and interactions between family members that may not have been a part of their normal routine.
An important piece of Taking Care is the consideration of the interactions of family caregivers with professional medical care workers. These professional workers provide help and training on procedures but are themselves often limited by structural factors (e.g., legal limitations on the number of nurse visits allowed by insurance). These limitations then influence what the nurse is able to do, furthering inequalities and precarity in the care process. In addition to professional workers whom caregivers come in contact with through the medical system, some caregivers also have personal connections to other professional medical staff through their family and friend network. The systems of care are often patchworked together, and each thread is a potential turning point for the caregiver and care recipient’s outcomes.
The variability across systems of support for family caregivers often furthers the complexity, precarity, and inequality experienced in the care process. National-level policies and programs that support family caregivers are limited in the Unites States. State-level policies, though sometimes more supportive, are often fragmented. Private insurance also varies widely by location or company. Narratives throughout the book highlight the disconnect between the focus on “home is best” and the lack of supports for achieving that goal in a safe way. For instance, whereas professional caregivers have workplace protections (albeit sometimes weak ones), family caregivers have very few to none. A family’s home may not be equipped to handle the tasks or even allow for enough space for equipment (e.g., the space required for a hospital-grade bed), yet very few discharge policies consider the home environment. Further, home environments are not as sterile as hospitals, potentially increasing the likelihood of infection and other complications. Because of the varied settings within which care takes place, outcomes for caregivers can include sleep disruptions, less time for attending to their own care and health, struggles with sense of self and roles, and inability to replace lost income or employment if their paid work is disrupted. Mong argues that more robust national policies, including direct supports, workplace policies, and end-of-life policies, have the opportunity to better support caregivers and therefore improve outcomes for both family caregivers and care recipients.
Building on feminist work, Mong argues that the invisibility of family care is rooted in the idea of separate spheres—that family matters are private troubles and not public issues—with gender serving as an organizing principle in this unequal process. Women are more likely to provide family care, and many of the medical care workers involved in the system tend to be women as well. Normative expectations for family caregivers are intimately wrapped up with larger gender role expectations, but the boundaries between these roles become unclear for many caregivers. For instance, reflecting on her own lived experience as a caregiver, Mong notes “Surely this process—whatever it was—was way beyond mothering” (p. 3). Future research should further explore these boundaries and how a caregiver’s sense of self and wanting to be perceived as a “good” caregiver may tie into phenomena such as “intensive mothering.”
Overall, Mong lays important groundwork that I hope others will build on. Taking Care provides a sweeping view of the experiences of family caregivers providing medical care and the structural limits that often work against them. Future work could also explore the experience of receiving medical care from the care recipients’ side, potentially providing dyadic analyses comparing the two sides of the experience. As acknowledged by Mong in the appendix, the study’s sample is mostly white. Future research could benefit from examining the experiences of family caregivers among a more diverse sample. Mong’s book contributes to a growing set of studies that show that making families responsible for care but providing few supports exacerbates inequalities. Care should be understood and regarded as critical social infrastructure.