Location: Dinwoodie 1 and 2, Cicely Saunders Institute, Denmark Hill Campus
What’s the story? Patient and family carer experiences of living with a life limiting diagnosis
Speaker: Dr Marilyn Kendall, University of Edinburgh
About the speaker: Having completed a PhD concerned with service users’ experiences of severe mental illness, Marilyn joined the Edinburgh group in 1999 and has since worked on a variety of palliative care studies. She has a particular interest in the use of serial and multi-perspective interviews in health service research, and in narrative research. In 2013 the Primary Palliative Care Research Group was awarded the Principal’s Medal for outstanding service, in recognition of its work in developing palliative care. Marilyn is currently working on a Scottish Government funded study of the needs of people who have a severe stroke, and their families. She also supervises a number of PhD students and teaches qualitative research methods.
Abstract: The Primary Palliative Care Research Group at the University of Edinburgh has carried out many qualitative longitudinal studies looking at the experiences of people in their last years of life. In this talk I will discuss the key themes and issues, looking at studies from across all three of the main trajectories of functional decline at the end of life. The contrasting illness narratives offered by patients and family carers affect and shape their experiences, thoughts, and fears in the last months of life. A detailed understanding of the varied experiences, and views, of people living and dying with different conditions, and their family and professional caregivers, should help policy-makers and clinicians design and deliver more appropriate and person-centred care.