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Burke RE, Jones J, Ho PM, Bekelman DB. Caregivers' perceived roles in caring for patients with heart failure: what do clinicians need to know? Journal of cardiac failure. 2014 Oct 1; 20(10):731-8.
BACKGROUND: Poor self-management of heart failure (HF) is an essential contributor to poor outcomes. Caregivers are involved in the care of HF patients, but caregiver interventions intended to improve the outcomes of patients have been largely unsuccessful. Improved knowledge of caregivers'' desired roles in care may improve future interventions. METHODS AND RESULTS: This qualitative study of 20 caregivers of HF patients recruited from an academic medical center used a general inductive approach, with insights from role theory, to analyze the data. Caregivers perceived themselves as health care managers and care plan enforcers, advocates for quality of life, and experts in the lived experience of HF at home. However, they encountered role strain (expectations of role exceed ability to perform role) and role conflict (incompatible or contradictory roles) when it seemed that these roles were incompatible with those that they felt the health care system saw them in. This resulted in expressions of anger and distrust towards the health care system. CONCLUSIONS: Clinicians caring for patients with HF can seek to better empower and enable this care. Involving caregivers in disease management research and assessing their roles before intervention may hold promise for enabling and empowering caregivers to improve outcomes of HF patients.