Beyond Caregiver Burden: Reimagining Care in Social Work Research

Brianna Urquhart & Margaret F. Gibson

June 2, 2023 | CASWE, York University

Why do we talk about the work that caregivers do as a "burden" and how does this framework limit our responses? This paper critically reviews current literature on informal care and analyzes interview data from the Reimagining Care/Work Policies study (P.I. Andrea Doucet, funded by a SSHRC Partnership grant) from a disability justice lens. As Canadian social workers navigate a healthcare crisis and straining social safety net, care needs are increasingly being met by family members. What care is, who provides it, and what impact it has become an urgent focus for researchers. We conducted a review of research literature on care work and compared our findings from interviews with families with disabilities. The existing literature relies heavily on the concept of “caregiver burden”, a term that reduces informal care to a unilateral, inherently negative, and highly individualized act. This characterization does not reflect the multidimensionality, multidirectionality, and systemic nature of care that was reported by interview participants. The people we interviewed often varied in their descriptions of what care meant in their families and how it affected them, and highlighted the ways in which their care was shaped by their social context. Workplace policies and systemic gaps emerged as opportunities for potential change. We argue that collective care frameworks developed by disability activists, along with theories of relational interdependence from Indigenous scholars, provide a useful resource when thinking about who engages in care, what caregivers do, and how we can respond.