Caretaking as articulation work: The effects of taking up responsibility for a child with asthma on labor force participation

Abstract

A well-established quantitative literature has documented the financial toll for women's caretaking. Still, we do not know much about the process by which women end up taking on an extensive caretaking role and what they do on a daily basis. Based on in-depth interviews with a convenience sample of fifty caretakers of school aged children with asthma and nine health professionals in the USA, this study examines how health professionals socialize mothers into an intensive caretaking role for their children with asthma, how mothers negotiated and perform that role, and the impact of care work on their labor force participation. Care providers assign broad caretaking tasks that require further articulation work to get the job done. Although mothers care for their children in varied ways, caring for a child with a chronic disease remains a time-consuming activity. Mothers pay a price for the indeterminate nature of articulation work by scaling back their involvement in the paid labor force.

Introduction

In an era of evidence-based medicine, many health care interventions have been scripted in protocols and guidelines that instruct clinicians how to best diagnose and treat patients (Mykhalovskiy & Weir, 2004). Yet much residual work remains to be done by patients and their caretakers. While a physician may request that a drug be taken three times a day as needed, someone has to make sure the prescription is filled, monitor for bodily symptoms, and then administer or take the drug, and keep an eye on possible side effects. Gerson and Star refer to this kind of work as articulation work. “Articulation consists of all the tasks needed to coordinate a particular task… No matter how detailed the requirements are, they must be aligned with or tailored to a set of implementation conditions that cannot be fully specified ahead of time” (Gerson & Star, 1986, p. 258). Articulation work is the work done by invisible armies of nameless secretaries, support staff, technicians, administrative and other help, editors, and other backstage workers (Daniels, 1987; Shapin, 1989; Timmermans, 2003). It is the work that allows a principal investigator of a large laboratory to multi-task (Latour, 1987), and a piece of art to be recognized as an artist's unique expression (Becker, 1982). Articulation work helps implement unstated assumptions or reconcile incommensurable procedures to get any frontline job done. Gerson and Star argue that without a full understanding of articulation work, we will only grasp idealized representations of work and fail to understand lived experiences. In this case, articulation work encompasses the work required to keep a child free of asthma.

Articulation work has grown in importance in the current US health care field through an increased reliance on informal caretaking. Health payers such as Medicare, Medicaid, and private insurance companies have created strong financial incentives for home health care and for a reduction in the length of hospital stay (Glazer, 1993; Kenney, Rajan, & Soscia, 1998; Lubitz, Greenberg, Gorina, Wartzman, & Gibson, 2001; Muramatsu & Campbell, 2002). Generally, when reimbursements shifted from retrospective fee-for-service to prospective payment systems based on diagnosis, hospitals aimed for quicker release of sicker patients and less in-hospital services. Similar shifts in reimbursement have also dampened paid home health care (McCall & Korb, 2003). The financial incentives for home health care have given rise to an extensive industry of home health and telemedicine technologies and various pharmaceutical breakthroughs (Keenan & Fanale, 1989; Ruddick, 1994). The home care movement has been further stimulated by the deinstitutionalization of mental care (Mechanic & Rochefort, 1990), libertarian health politics emphasizing personal responsibility in health (Knowles, 1977), and consumer health advocacy aiming for a greater role of patients and their caretakers in medical decision making (Leiter, 2004). These interrelated factors foster a strong ideology and financial and technological infrastructure of self-sufficiency and informal caretaking (Heaton, 1999). Delegating care work to patients and relatives has become an attractive policy pathway to curtail the cost of health care utilization (Parker et al., 2002). Economists estimated the market value of all informal caretaking at $196 billion in 1997, dwarfing the national spending on formal home health care ($32 billion) and nursing home care ($83 billion) (Arno, Levine, & Memmott, 1999).

Articulation work carries a price: while it may be officially invisible, someone has to make time and devote resources to keeping everything else on track. Policy and social science research confirms that the burden for caretaking falls overwhelmingly on women and carries a heavy cost for their ability to engage in the paid labor force (Abroms & Goldscheider, 2002; Blain, 1993; Leiter, 2004; Leiter, Krauss, Anderson, & Wells, 2004; Traustadottir, 1991; Young, Dixon-Woods, Findlay, & Heney, 2002a). Stress associated with caring for chronically ill family members may spill over into work roles and negatively affect pay and career opportunities (Dilworth, 2004; Harrington Meyer, 2000; Nomaguchi, Milkie, & Bianchi, 2005; Sarkisian & Gerstel, 2004) while role strain may also affect other areas of family life (Erdwins, Buffardi, Casper, & O’Brien, 2001; Goode, 1960; Young, Dixon-Woods, Findlay, & Heney, 2002b). Scholarship on gender inequalities in parenting establishes the difficulty of combining mothering with paid employment (Avellar & Smock, 2003; Budig & England, 2001; Roxburgh, 2005). The care burden is worsened by inflexible work culture and arrangements, inadequate or unaffordable child-care provisions, insufficient family leave policies, and low wages and status of paid care workers (Heymann, 2000; McKie, Bowlby, & Gregory, 2004).

Still, in spite of this well-established quantitative literature of the financial toll for women's caretaking and a medical literature documenting stress of caregivers (see, for example, (Farmer, Marien, Clark, Sherman, & Selva, 2004; Garro, Thurman, Kerwin, & Ducette, 2005; Meltzer & Mindell, 2006; Stewart, Ritchie, McGrath, Thompson, & Bruce, 1994; Svavarsdottir, Rayens, & McCubbin, 2005), we do not know much about the process by which women end up taking on an extensive caretaking role and what they do on a daily basis. Based on in-depth interviews with health care providers and primary caretakers of school-age children with asthma, this study shows how mothers articulate the care of their child's asthma: we explore how health care providers raise and enforce normative expectations of care, how mothers integrate care activities in their own lives, and how the resulting time-consuming care activities affect caretakers’ labor force participation. We contribute to what Heimer and Staffen (1998) have called the “sociology of responsibility”: an analysis of the social mechanisms through which people are compelled to care about the welfare of others. We show how health professionals’ expectations socialize mothers into an intensive caretaking role for their children with asthma. We specify that the link between articulation work and responsibility is health care providers’ delegation of diffuse care tasks. This delegation often remains unspecified: “someone” has to make sure a child receives the necessary medications and that someone ends up being the child's mother. Mothers, however, are not passive actors—they “choose” what they actually do from what they are told to do by health professionals. Still, care work for a chronic disease is an indeterminate and time-consuming activity and mothers pay a price for the diffuse nature of articulation work by scaling back their involvement in the paid labor force.