Experiences of end-of-life care from the perspective of older patients and bereaved carers: A focus on transitions between place of care and resilience

Abstract

My thesis uses qualitative methods to explore older people’s and bereaved carers’ experience of transitions between places of care at the end-of-life. I use Windle and Bennett’s (2011) ecological framework of resilience as a lens to explore the data in a novel way. I address four research questions: first, what are the experiences of older people at the end-of-life who move from one care setting to another? I report that moves between health care settings can be characterised by inflexibility and a failure of professional carers to listen. Continued attention to basic aspects of care and communication between health professionals and patients is key. Second, what are the experiences of bereaved carers who have also navigated a move from one care setting to another? I find that older carers are typically ‘conductors’ of care, making strong contributions to maintaining good care throughout the illness trajectory. On admittance of the care recipient to hospital, family carers find their influence in decision-making vastly reduced, yet carers endeavour to act flexibility to provide continuity, support and enhance wellbeing across settings. Third, what role do social relationships play in the ability of carers to adapt and bounce back from this stressful situation? I find that social support for carers providing end-of-life care is almost exclusively based around end of life care ‘work’. Multi-dimensional support is needed for carers to enhance their resilience. Fourth, what are the experiences of male bereaved carers and how does their experience of adapting to this stressful situation look? I find that informational and tangible support was forthcoming and timely for male caregivers but emotional aspects of caring where not always met. Providing respectful, timely support and clear information is a key way in which professional services could enhance the developments of resilience amongst caregivers. Together, the findings contribute to the literature on the importance of social ecological approaches to resilience. The ecological framework is modified to enhance its applicability to informal carers of people at the end-of-life.