Caretaking as articulation work: The effects of taking up responsibility for a child with asthma on labor force participation
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.
Section snippets
Methodology
The data of this paper consists of open-ended, in-depth interviews with a convenience sample of 50 primary caretakers of at least one child aged 6–12 with asthma and nine health professionals in two communities in New England. The IRB of Harvard University's School of Public Health approved this research. The interviewed health professionals consisted of three school nurses, two pediatricians, one asthma specialist, two nurse practitioners, and one visiting public health nurse. Caretakers and
The asthma caretaking script
Over the past decades, childhood asthma has become a major chronic health burden. According to 2002 National Health Interview Survey data more than 8.9 million children under age 18 have had a diagnosis of asthma and an estimated 4.2 million had an asthma attack within the past year in the USA. Asthma prevalence has increased between 1980 and 1996 and leveled off between 1997 and 2002 (Dey, Schiller, & Tai, 2004). Asthma is the main reason for school absenteeism due to a chronic illness (Taras
Mother as primary caretaker
The primary caretaker of an asthmatic child in our study was in all but one instance the mother. We use the term “mother” to refer to the adult, female caretaker in the household: in our study that included biological mothers, one grandmother with custody rights, and two adoptive mothers. “Father” refers to the adult, male caretaker in the household: a biological father, stepfather, boyfriend, or grandfather. In fifty interviews, only one father was truly the child's primary caretaker,
Mothers’ articulation work of asthma caretaking
Health care providers impress mothers that to love their children with asthma means to do everything possible to keep the child's disease under control. The centerpiece of pediatric asthma treatment is drugs, a combination of quick-relief and long-term maintenance medication. Treating asthma, however, is not simply a matter of taking a pill out of a container and popping it in the child's mouth. Mothers quickly realize that asthma caretaking is a diffuse responsibility with the potential to
Variations in drug administration
Mothers did not exactly follow health care providers’ prescriptions. One of the puzzles of contemporary asthma care is persistent nonadherence to physician's recommendations. As the guidelines attest, care providers feel that with better drugs asthma should be a manageable disease. In reality, few patients seem to take the drugs as directed (Crain, Weiss, & Fagan, 1995; Flores, Lee, Bauchner, & Kastner, 2000; Ma & Stafford, 2005). The delegation of asthma care work articulated by mothers may
Combining asthma care work and paid labor
Mothers explained that taking care of a child with asthma affected their job history and aspirations. There is a wide variety of ways in which asthma care may cut into labor force participation. Childhood asthma requires a mother who is available during school hours because school nurses may call mothers to pick up their child when they start wheezing or coughing uncontrollably. Such a call may come at any moment, especially because children—according to parents and school nurses—are taught in
Discussion–Conclusion
Why do mothers take care of sick children even if it may cost their careers? Is it simply because they love their children or because taking care of children is normatively the best course of action? Rather than providing a priori normative rationales, the sociology of responsibility is concerned with the empirical question of how various social arrangements propel people to uphold norms (Heimer & Staffen, 1998). In the contemporary health care system, health professionals have great incentives
Acknowledgments
This research was funded by a Health and Society grant from the Robert Wood Johnson Foundation. We thank Ichiro Kawachi and Lisa Berkman for their support and Judith Seltzer for stimulating suggestions.
References (72)
- et al.
Parent/caregiver stress during pediatric hospitalization for chronic feeding problems
Journal of Pediatric Nursing
(2005) Dilemmas in sharing care: Maternal provision of professionally driven therapy for children with disabilities
Social Science & Medicine
(2004)- et al.
Mothering children who have disabilities: A Bourdieusian interpretation of maternal practices
Social Science & Medicine
(2004) - et al.
The problem of evidence-based medicine: Directions for social science
Social Science & Medicine
(2004) - et al.
Resisting medicines: A synthesis of qualitative studies of medicine taking
Social Science & Medicine
(2005) - et al.
Parenting in a crisis: Conceptualising mothers of children with cancer
Social Science & Medicine
(2002) - et al.
Parenting in a crisis: Conceptualising mothers of children with cancer
Social Science & Medicine
(2002) Man, woman, and chore boy: Transformations in the antagonistic demands of work and care on women in the nineteenth and twentieth centuries
Milbank Quarterly
(1995)- et al.
More work for mothers: How spouses, cohabiting partners and relatives affect the hours mothers work
Journal of Family and Economic Issues
(2002) The De-scription of technical objects
Deciding who lives: Fateful choices in the intensive care nursery
The economic value of informal caregiving
Health Affairs
Parenting support in the context of poverty: A meta-synthesis of the qualitative evidence
Health and Social Care in the Community
Has the price of motherhood declined over time? A cross-cohort comparison of the motherhood wage penalty
Journal of Marriage and the Family
Art Worlds
Latino children with asthma: Rates and risks for medical care utilization
Journal of Asthma
I can’t come in today, the baby has chickenpox! Gender and class processes in how parents in the labour force deal with the problem of sick children
Canadian Journal of Sociology/Cahiers Canadiens de Sociologie
The wage penalty for motherhood
American Sociological Review
The meanings of medication: Another look at compliance
Social Science & Medicine
Managing chronic illness at home: Three lines of work
Qualitative Sociology
More work for mother: The ironies of household technology form the open hearth to the microwave
Pediatric asthma care in US emergency departments
Archives of Pediatric and Adolescent Medicine
Invisible work
Social Problems
Predictors of negative spillover from family to work
Journal of Family Issues
Emerging theories of care work
Annual Review of Sociology
The relationship of women's role strain to social support, role satisfaction and self-efficacy
Family Relations
Primary care supports for children with chronic health conditions: Identifying and predicting unmet family needs
Journal of Pediatric Psychology
Self-reported physician practices for children with asthma: Are national guidelines followed?
Pediatrics
Pediatricians’ attitudes, beliefs, and practice regarding clinical practice guidelines: A national survey
Pediatrics
The invisible heart: Economics and family values
Analyzing due process in the workplace
ACM Transactions on Office Information Systems
Women's paid and unpaid labor: The work transfer in health care and retailing
A theory of role strain
American Sociological Review
Not-so-nuclear families: Class, gender, and networks of care
Care work: Gender, labor, and the welfare state
Cited by (34)
Digital mediation of candidacy in maternity care: Managing boundaries between physiology and pathology
2021, Social Science and MedicineCitation Excerpt :Corbin and Strauss highlight two basic lines of work either in the ‘service of trajectory or everyday life management’ and each of them contains different sub-types of work (Corbin and Strauss, 1991 p.224). While there has been great attention to examine the self-care work done by patients and caregivers in the context of illness trajectory (illness-related work) for several conditions (Burgess et al., 2019; McCoy, 2009; Timmermans and Freidin, 2007; Yin et al., 2020), there has been limited attention on women's pregnancy and birth trajectories (Wiener et al., 1979). We explore the concept of digitally-mediated care work as women and partners utilise digital technologies to interact with the complex, often fragmented healthcare infrastructure (Gui and Chen, 2019; Strauss et al., 1997).
“Ne nnipadua mmpe” (the body hates it): Exploring the lived experience of food allergy in Sub-Saharan Africa
2018, Social Science and MedicineCitation Excerpt :Like other allergies, food allergy symptoms are often unpredictable and reactions can occur at any time and place. Care and management therefore require that parents or guardians are readily available to attend to needs of children, which as Timmermans and Friedin (2007) have observed in mothers with asthmatic children can be difficult to combine especially given an inflexible working schedule. In this study, most participants had full-time jobs, the vast majority working in the private sector.
Experiences of fathering a baby admitted to neonatal intensive care: A critical gender analysis
2012, Social Science and MedicineCitation Excerpt :In negotiating an equal parenting role with their partners, some men talked about making a focused effort to attend the NICU at different times to their partners, so that they could each spend some ‘quality bonding-time’ caring for their baby and this worked very well for some fathers (Joe-9,27yrs-T1/EF/PT; Malachy-11,33yrs-T1/FT/PT). In relation to interactions with health professionals, scholars have noted that healthcare professionals play a role in socialising mothers in caretaking responsibilities by encouraging bonding with their children (Anspach, 1993; Heimer & Staffen, 1998; Timmermans & Freidin, 2007). However, the fathers in this study felt that the nurses left it ‘up to them’ to become involved and to show competence.
Care Frictions: A Critical Reframing of Patient Noncompliance in Health Technology Design
2022, Proceedings of the ACM on Human-Computer InteractionChronic Illness and Child Behavior Problems in Low-SES Families: The Mediation of Caregivers’ Mental Health
2022, Journal of Child and Family StudiesInformal caregiving and the risk of material hardship in the United States
2022, Health and Social Care in the Community