Current and recent projects

Advance Care Planning for people experiencing homelessness. This study will develop a new process to support future care and legacy planning which will address the end-of-life priorities of street whānau. We will also develop resources to support Te Tāpui Atawhai/Auckland City Mission staff with the skills, knowledge and confidence required to have conversations about death, dying and future planning. The project is funded by the Auckland Medical Research Foundation and will begin in March next year and run for 18 months. The study PI’s are Dr Jackie Robinson and Stella Black. Other members of the team include Professor Janine Wiles, Associate Professor Jackie Robinson, Dr Natalie Anderson, Dr Helen Hamer, and Professor Merryn Gott. We are also working with partners from hospices across Auckland.

Co-designing information resources to support whānau caring for family members at the end of their lives. Co-PIs Associate Professor Jackie Robinson and Stella Black are working in the Eastern Bay of Plenty to develop resources for whānau caregivers in rural communities. The study is funded by an HRC Activation Grant.

Paediatric Palliative Care Education Aotearoa. This Auckland Medical Research Foundation study forms part of our paediatric palliative care research programme led by Dr Gemma Aburn, with Dr Tess Moeke-Maxwell, Dr Deborah Raphael, Professor Merryn Gott, and Dr Ross Drake. The work involved the Education in Palliative and End of Life Care for Pediatrics (EPEC-Ped) curriculum developed in 2012 in the US. We adapted the curriculum to meet the needs of clinicians working with children in Aotearoa New Zealand. The education sessions were then delivered across Aotearoa and evaluated. A key focus was on exploring how tikanga Māori (Indigenous customs and traditions) was integrated to create a culturally relevant and safe space for practitioners to learn. This programme is now run as a short course by the School of Nursing, University of Auckland, supported by philanthropic funding.

Underserved communities in palliative care. This project was commissioned by Te Whatu Ora/Health New Zealand to collate evidence regarding the palliative and end of life care experience of communities who are traditionally underserved by palliative care. The project was undertaken by many researchers within and outside Te Ārai and led by Professor Merryn Gott, Stella Black and Associate Professor Jackie Robinson.

Exploring equity in access to children’s palliative care. This study explores palliative care provision for children in Aōtearoa, New Zealand through interviews and the analysis of routinely collected data. The project is led by Dr Gemma Aburn and supported by other members of the paediatric palliative care research team. Funding was provided by the HRC.

End-of-life care for people with learning disabilities. In this HRC Activation Grant, Research Fellow Dr Nicola McKenzie is exploring end-of-life care for people with learning disabilities. She’ll be interviewing more than two dozen people to identify gaps and issues related to the topic. This work builds on her PhD and the work she led for the Underserved Communities in Palliative Care Report commissioned by Te Whatu Ora. Other members of the team include Dr Henrietta Trip (University of Otago), Dr Jackie Robinson, Prof Merryn Gott, and lived experience expert Hamish Taverner.

Maungārongo: exploring palliative care need for incarcerated New Zealanders. This project addresses the provision of palliative care for incarcerated non-Māori and Māori of all genders. This issue has been highlighted as an equity concern internationally and within Aotearoa by Te Whatu Ora/Health New Zealand and Hospice New Zealand, who are both supporting this project. Interviews are being conducted with people providing health, spiritual and/or cultural support to people in prison. The project is funded by an HRC Activation Grant. The PI’s are Professor Merryn Gott and Dr Tess Moeke-Maxwell and fieldwork has been undertaken by Stella Black and Associate Professor Jackie Robinson. Dr Natalie Anderson is also part of the team.

Waerea: Māori whānau experiences of assisted dying in Aotearoa New Zealand. This study is funded by an HRC Rangahau Māori project grant and led by Dr Tess Moeke-Maxwell. Other Named Investigators are Professor Linda Nikora and Associate Professor Jackie Robinson. The research explores the experiences of Māori whānau who choose to have an assisted death. Key outcomes from the project include two graphic novels to support whānau and their communities in navigating both assisted dying and palliative care..

Palliative Care and Hospice for Cancer Patients Post-Covid-19: The Way Forward. Cancer patients were considered a vulnerable group during the COVID-19 pandemic. The project consists of two parts. Part one has involved interviews with 30 representatives from hospices, community groups, non-governmental organisations, and community care providers (GPs, district nurses), discussing the challenges of and responses to palliative care for cancer patients during and after the pandemic. In Part Two five to ten representatives from Part One came together in a workshop to discuss ideas for new practices and policies to support cancer patients with palliative care needs and their families into the future. The study has been funded by the Cancer Research Trust NZ and the PI is Dr Rosemary Frey. Other members of the team include Dr Tess Moeke-Maxwell, Associate Professor Jackie Robinson, Dr Deborah Raphael, Dr Lisa Williams and Professor Merryn Gott.

Perspectives on Telehealth for Palliative Care for Underserved Populations. This project builds upon current research to increase our understanding of what a successful palliative and end-of-life care telehealth model would look like for underserved populations in New Zealand, Australia, and the United Kingdom. The study is funded by a Catalyst Grant and the PI is Dr Rosemary Frey. Other members of the team include Professor Vanessa Burholt, Associate Professor Michelle Honey, Dr Aileen Collier (Flinders University, Australia), and Dr Matthew Allsop (Leeds University, UK).

Palliative and end of life care needs, including assisted dying of Māori and non- Māori TLGBTQI+ older adults. This project was funded by a Health Research Council 2023 Activation grant. This research explored issues of importance at end of life for people who are members of Rainbow Communities. The PI was Dr Lisa Williams and Dr Tess Moeke Maxwell led research with Māori whānau. Other members of the team were Susan Waterworth and Professor Merryn Gott.

Vivian: exploring the role of a graphic novel in nursing education on gender and palliative care, Universitas 21 (U21). This multi-national study involved Linnaeus University, Sweden and the University of Birmingham and explored the value of graphic novel Vivian as an education resource for undergraduate nursing students. The PI was Dr Lisa Williams, supported by Susan Waterworth, Professor Merryn Gott and Dr Tatiana Tavares in Auckland, with international partners including Dr Ping Gu, Ashwini Deshmukh and Alison Gayton from the University of Birmingham, Dr Carina Werkander Harstäde from Linneus University and Jane Nicol from St Richard’s Hospice.

Rāpua te Mārama: Bereaved Māori whānau experiences of palliative care and death. This qualitative Kaupapa Māori study used a public health lens to investigate the end-of-life experiences of 26 Māori whānau who had someone in their ‘bubble’ die during COVID-19 lockdown. The study PI was Dr Tess Moeke-Maxwell and other members of the team included Associate Professor Jackie Robinson, Dr Lisa Williams, Professor Linda Nikora, Professor Janine Wiles and Professor Merryn Gott.

Te Whakahekenga: Dying as a health and social justice issue. This five year study in investigated the experiences of services at the end of life for people living in areas of deprivation in the Bay of Plenty and Auckland. The study was led by Associate Professor Jackie Robinson and Stella Black. Other members of the team included Professor Merryn Gott, Professor Janine Wiles, Professor Dan Exeter, Dr Tess Moeke-Maxwell and Dr Lisa Williams. The project was funded by an HRC Project Grant.

Social connectedness among older people during Covid-19. This project was funded by the Auckland Medical Research Foundation. The research explored the impact of the Covid-19 pandemic on older people living across Aotearoa. The study PI was Professor Merryn Gott and other members of the team were Dr Tessa Morgan, Professor Janine Wiles, Dr Lisa Williams, Elizabeth Fanueli and Dr Tess Moeke-Maxwell.

Tupu Tika: Building whānau capacity to carry out end-of-life and end-stage care, Health Research Council. PI: Tess Moeke-Maxwell

Pae Herenga: An investigation of Māori whānau end of life cultural care customs. Health Research Council. PI Tess Moeke-Maxwell Maxwell. AIs Rawiri Wharemate, Merryn Gott, Janine Wiles, Linda Nikora.

Ageing Well National Science Challenge, MBIE. A follow-up study to our initial NSC grant looking into inter-generational social connection. PI: Merryn Gott and Lisa Williams.

Dying in the Margins: uncovering the reasons for unequal access to home dying for the socio-economically deprived.  Economic and Social Research Council. PI: Naomi Richards. AIs Merryn Gott and Emma Carduff.

The role of the district nurse within an integrated model of community based palliative care. Cancer Research Society. PI Jackie Robinson. AIs Merryn Gott, Tess Moeke-Maxwell.

The role of the district nurse within an integrated model of community based palliative care. A+ Trust. PI Jackie Robinson. AIs Merryn Gott, Tess Moeke-Maxwell.

Identifying opportunities to improve palliative care for people with cardiac disease. Heart Foundation. PI: Jackie Robinson. AIs Merryn Gott, Tess Moeke-Maxwell.

Developing new methods to research the economic costs of family caregiving – an international collaboration. World Universities Network. PI Merryn Gott and Clare Gardiner.

End of Life Care Provision by Auckland DHB. Auckland Academic Health Alliance. PIs Merryn Gott and Andrew Old. AIs Jackie Robinson, Rosemary Frey, Tess Moeke-Maxwell.

International Collaborative Network project to advance international research on participatory methods with people living with dementia. Economic and Social Research Council. PI: John Keady. NZ PI: Lisa Williams.

SHARE midpoint assessment. Health Research Council. PI: Rosemary Frey. AIs: Merryn Gott, Michal Boyd, Jackie Robinson, Tess Moeke-Maxwell.

SHARE: An Evaluation. Freemasons Foundation. PI: Rosemary Frey. AIs: Merryn Gott, Michal Boyd, Jackie Robinson, Tess Moeke-Maxwell.

Tapinga ‘a Maama: Pacific life and death in advanced age. PI Ofa Dewes, AIs: Merryn Gott, Tess Moeke-Maxwell, Lisa Williams, Janine Wiles, Mervina Cash-Kaeo, Malia Hamani. Ministry of Business, Innovation and Employment (MBIE) National Science Challenge Ageing Well.

Phase 2 End of Life with Dementia Evaluation Research ELDER. PI, Michal Boyd, AIs: Merryn Gott, Jackie Robinson, Julia Slark, Rosemary Frey, Susan Foster, Deborah Balmer, Tess Moeke-Maxwell, Heather McLeod. Ministry of Business, Innovation and Employment (MBIE) National Science Challenge- Ageing Well.

Social connection, isolation and loneliness among Maori, Pacific, NZ European and Asian older people. PI: Merryn Gott, AIs: Louise Rees, Judith Davey, Tess Moeke-Maxwell, Janine Wiles, Richard Edlin, Robyn Dixon, Ofa Dewes, Hong-Jae Park, Lisa Williams, Juliana Mansvelt, Tessa Morgan, Hamish Jamieson, Clare Gardiner. Ministry of Business, Innovation and Employment (MBIE) National Science Challenge Ageing Well. In partnership with Age Concern New Zealand.

Dementia Pathways, PI, Michal Boyd, AIs: Merryn Gott, Jackie Robinson, Ngaire Kerse (School of Population Health) and Martin Connolly (School of Medicine)
Perpetual Guardian Trust.

Pae Herenga whanau caregiving pilot project. PI: Tess Moeke-Maxwell (Ngai Tai), AIs: Te Arai Kaumatua Advisory Roopu, Merryn Gott. Health Research Council of New Zealand, Nga Kanohi Kitea grant

A survey to pilot VOICEs-NZ. PI: Merryn Gott, AIs: Andrew Old, Jackie Robinson, Rosemary Frey, Tess Moeke-Maxwell. Academic Health Alliance.

Take care of yourself. Creating resources for whanau and family caring for relatives with a life-limiting illness. PI: Lisa Williams, AIs: Ofa Dewes, Stella Black, Tess Moeke-Maxwell, Ros Capper, Michal Boyd, Rosemary Frey, Merryn Gott. School of Nursing

Te Pakeketanga: living and dying in advanced old age. PI: Merryn Gott, AIs: Tess Moeke-Maxwell, Stella Black, Lisa Williams, Gabriella Trussardi, Janine Wiles, Ngaire Kerse, Anna Rolleston. Health Research Council of New Zealand

Exploring key factors in potentially avoidable admissions from aged residential care: Phase 2. PI: Rosemary Frey, AIs: Merryn Gott, Michal Boyd, Jackie Robinson, Sue Foster.  The University of Auckland

Potentially inappropriate interventions and admissions at end of life. PI: Merryn Gott. Health Research Council of New Zealand, in partnership with Auckland District Health Board.