Not Breathing Easy: “Disarticulated Homework” in Asthma Management

Abstract

Recent health policy in the United States encourages an outsourcing of labor from professional practice into domestic spaces, where in theory, medical professionals supply the training, technologies, and guidance needed to discharge responsibility for care to patients or caregivers. Mattingly et al. (2011) term this labor “chronic homework,” describing the relationship between the assigning and undertaking of medical care at the borders of professional and domestic domains. This is a system predicated on relationships between professional and caregiver. However, in our research with families and providers in two U.S. sites, we observed a “disarticulation” of asthma care from professional medicine. Caregivers may undertake routine asthma management with little physician oversight, transforming chronic homework into what we term “disarticulated homework.” We argue that expanding the concept of chronic homework to theorize disarticulation processes can help elucidate how health disparities are reproduced in the gap between medical systems and domestic life. [asthma, self‐management, caregiving pharmaceuticalization, health disparities]

Breathing Together: Children Co-constructing Asthma Self-Management in the United States

“…Including children without overburdening them with tasks and responsibilities that are beyond their skills is a delicate balance (this issue also applies to adults (Anderson et al 2016 ; Spray et al 2021 )). We certainly do not advocate that the neoliberal responsibilization of adult citizens be extended to children.…”

“…Younger children tended to engage more with drawing and sensory materials, and children's representations could helpfully illustrate embodied and relational aspects of asthma experience (for example by showing experiential aspects of breathing difficulties using balloons, pipe cleaners and Play Doh) (Spray, Fechtel, and Hunleth in press). Older children could prefer talking about their experiences, though the drawing materials could also facilitate rapport as researchers also drew together with participants (Spray 2021).…”

“…Clinical versions of asthma self-management typically focus on patient self-administration of daily inhaled corticosteroids (ICS) to control inflammation and prevent symptoms, alongside short-acting inhaled beta-agonist (SABA) bronchodilators (“rescue” inhalers) to relieve acute symptoms. In practice, asthma self-management involves complex work and specialized knowledge to detect symptoms, adjust dosages, and incorporate the mental labor of pharmaceutical management and trigger avoidance into the multiple temporal and spatial dimensions of daily life (Mammen et al 2018 ; Spray et al 2021 ; Hunleth et al 2020 ).…”

“…We have previously described the “caregiver’s protocol”: the range of activities caregivers undertook (including environmental management, home remedies, avoiding activity, emotion management) that are primary to asthma management but generally absent from the clinical gaze (Spray et al 2021 ). Caregiver’s protocols, however, were a one-sided view of asthma management, and as an entry point to children’s roles in asthma management, we found that collecting children’s protocols revealed the breadth and sophistication of children’s invisible self-care work.…”

“…We have previously reported how systemic forces such as racial and socio-economic disadvantage and the privatization of medicine shaped the nature of caregiver’s protocols (Spray et al 2021 ). Where access to health care, or health care itself is unreliable and resources constrained, families construct management regimes that utilized the resources they could access more readily.…”