Informal caregivers in home palliative care

Abstract

In order to deliver palliative care in line with the WHO definition, we must identify and support caregivers. This paper addresses some fundamental questions in defining, identifying and delivering interventions to caregivers. These considerations are key to organisation of appropriate health services, design and conduct of research, and specification and improvement of outcomes. Firstly we consider how we identify caregivers, and how we conceptualise a caregiver from the perspective of health service providers and researchers. We consider caregiver roles across cultures and settings. We then describe the challenges to selecting appropriate outcomes and what our expectations should be for intervention studies in terms of effectiveness, and the tools we use to assess and measure caregiver needs. We conclude with recommendations for future outcomes research.