1. Māori Palliative & End of Life Care Te Ārai Palliative and End of Life Care Research Group Dr Tess Moeke-Maxwell

2. Presentation outline Te Ārai Palliative and End of Life Care Group Introduction Research goals and interests Definition ‘Palliative Care’ Māori Whānau Digital Storytelling

3. T Te Ārai Palliative and End of Life Care Research Group

4. Research interests Has conducted research with older people for 20 years. Maintains 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 140 papers in peer reviewed journals. Her latest book, International Perspectives on Palliative and End of Life Care for Older People, was published by Oxford University Press in 2011. Professor Merryn Gott - Director of Research, School of Nursing, Associate Deputy Vice Chancellor (Research) Interests: Palliative care research, gerontology, mixed methods, user involvement

5. Te Ārai Aims To explore factors that enable people to ‘live well’ in the last years of their life and achieve a death that, where possible, is in line with their views and preferences. To focus specifically upon populations who are known to be at risk of receiving sub-optimal care at the end of life. To ensure that, through education, research training and postgraduate supervision, capacity exists within NZ to develop this research and service development agenda.

6. Definition of Palliative Care 1.Affirms life and regards dying as a normal process 2.Aims neither to hasten nor to postpone death 3.Aims to provide relief from distressing symptoms 4.Integrates physical (tinana), social (whānau), emotional (hinengaro) and spiritual (wairua) aspects of care to help the dying person and their family/whānau attain an acceptable quality of life 5.Offer help to the family/whānau/carers during the person’s illness and their bereavement. Ministry of Health (2001). The Palliative Care Strategy. Wellington.

7. Rationale Projected Māori deaths are expected to increase from 3,180 in June 2015 to 4,900 in 2033 (54% increase in 18 years) Deaths over 65 are expected to increase from 51.9% to 72.0% of total Māori deaths by 2033 Deaths over age 85 are expected to more than double by 2033. Palliative Care Council (2015). Updated Projections of Deaths in New Zealand, March 2015. Wellington: Cancer Control New Zealand.

8. Designing new ways to research Māori palliative & end of life care Māori research design Whānaungatanga Collaboration Culturally sensitive Manaakitanga. Bishop, G. 2005; Moeke-Maxwell T. et. al. 2014; The Pūtaiora Writing Group, 2010.

9. Māori whānau digital stories Using digital storytelling as a method to explore whānau end of life caregiving experiences

10. Māori knowledge viewed as holistic Māori research must address the following dimensions Wairua (spirituality) Hinengaro (intellect/emotions) Tinana (physical/body) Whānau (Durie, 1998).

11. Oral culture Waiata (song) Moteatea (poetry) Kauwhau (moralistic tale) Pakiwaitara (story) Pūrakau (myths) ( Walker, 1992 )