This presentation will describe a research programme exploring the experiences and support needs of families and whānau who provide care for people with a life limiting illness (whānau is a Māori term for extended family). Preliminary findings will be presented from a study investigating the end of life circumstances of Māori and non-Māori dying in advanced age, which was undertaken within a public health framework and with a particular focus on the work undertaken by family and whānau carers. Resources developed in collaboration with carers in related research will also be presented, including a music video made with Pacific Island family caregivers; digital stories made by Māori whānau caregivers; and a practical guide to caring written by an ‘ex-palliative home carer’. Transferable lessons for working with other communities of carers will also be considered.
The talk will be of interest to all those working or researching palliative and end of life care, as well as those who are interested in using digital media in their research and involving patients (PPI) in research projects.
Professor Merryn Gott, The University of Auckland
Merryn Gott has been conducting research with older people for over 20 years and has a particular interest in developing models of palliative and end of life care to meet the needs of ageing populations. Her research programme has been supported by substantial grants from the HRC, UK Department of Health, Research Councils and Health Charities. She has published over 180 papers in peer reviewed journals, as well as a number of books, including International Perspectives on Palliative and End of Life Care for Older People, published by Oxford University Press. goo.gl/REg0P4.
She is a Visiting Professor at the School of Nursing and Midwifery, University of Sheffield and sit on the Health Research Council, Public Health Assessing Committee. She has recently completed a five year term as Associate Editor, BMJ Supportive and Palliative Care and is an Editorial Board member for Progress in Palliative Care.