Policy delusions and dutiful daughters: imagined versus real care integration for older people

Introduction: All healthcare systems exhibit degrees of fragmentation, with “integrated care” advanced as the solution. Policymakers, consistently publishing important-looking documentation (plans, strategies, White Papers, policies, positioning statements), imagine how integrated care should be achieved. Their pronouncements may not always align with how integrated care is actually achieved on the front-lines. We observe that for older people who are unable to care for themselves, care is primarily coordinated by family members, and disproportionately by “dutiful daughters”. We compared two cases, England and Australia, to examine how caregivers’ role in integrating care is reflected in policy documents, research literature, and the lived experiences of dutiful daughters.
Method: Nineteen key policy documents were identified from England and Australia relevant to integrated care. Concept maps were derived using automatic content analysis via Leximancer 4.5, a text analytic program, depicting key concepts, themes and connections within and between the documents. The research team reviewed the documents to understand how family, particularly daughters, are considered in integrated care policy. To understand how the research literature frames daughters-as-carers, we used Leximancer to create a concept map of key research articles, complemented by a narrative summary of studies. We then provide four case studies exemplifying the realised, lived experiences of dutiful daughters in caring for their ageing parents.
Results: The unpaid work that daughters and other family members do to integrate care for older individuals was largely invisible in both England’s and Australia’s policy documents. Our analysis of the research literature found that women, particularly daughters, are disproportionately primary caregivers of older persons. The case studies revealed the challenges dutiful daughters face in coordinating care while managing other responsibilities, as well as their resilience and integrity.
Discussion and conclusion: Daughters, not policymakers or their idealised documents, make health systems work and create integrated care.