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For Whānau Manaaki Family Caregivers
- Kete Aronui Maori Palliative Care A site for whānau manaaki, family caregivers
- Te Ipu Aronui Road Map
- Kete Tuauri
- Spirituality and wairua
- Karakia definition
- Diverse spiritual faiths and practices
- Spiritual safety and protection
- Spiritual care within hospitals, hospices and aged residential care services
- The power of karakia
- Spiritual support at time of death
- What if you do not know your spiritual care customs?
- Kete Aronui - rongoā
- Rongoā healing
- Forms of rongoā
- Use of rongoā rākau (natural plant medicines) is increasing
- Are you thinking about using rongoā?
- Include your rongoā healer in your health care team
- Self-care
- Te Ipu Aronui’s Kete Tuauri
- Staying with the tūpāpaku
- Karakia before and after death
- Preparing the tūpāpaku (body)
- Caring for the tūpāpaku (body) after death
- Planning and preparation for care following death
- Whakanoa (spiritual clearing of environment process)
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For Health Professionals
- Whanaungatanga - Establishing a relationship
- Connections take time
- First contact - building a rapport
- Rich histories and lifestyles
- Building trusting relationships
- Whānau systems of care Care roles within whānau
- Geographical location and end of life care
- Challenges whānau face
- Cultural safety - more effective than cultural competency
- Cultural safety - a definition
- Māori health and palliative care workforce
- Strengthening Māori cultural safety
- Caring for Māori health professionals
- Tikanga
- Ngākau pono Working with a sincere heart
- Caring with aroha
- Self-care
- Te Reo Māori The Māori language
- New Zealand history
- Kaumātua tino rangatiratanga Independence, authority
- Places kaumātua are cared for
- Dying in a healthcare setting
- Living in a ‘home’
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Pae Herenga Research Background
- Healthcare providers
- Palliative care resources
- Support services
- Grief and loss support
- Research
- Tangihanga and funerals
- Links and Information for Health Professionals
- Te Reo Māori Resources
- Cultural Safety
- New Zealand History
- Pūrākau
- Advanced Care Planning (ACP)
- Medicines Directory
- Publications
- Māori Data Sovereignty
- Covid 19 Study
Introduction
The name Rapua te Mārama means gathering the light or becoming enlightened about the impact social restrictions had on the end-of-life care of whānau during the COVID-19 pandemic and how families adapted their tikanga to navigate tangihanga and bereavement. Our Te Ārai Kāhui Kaumātua and leader, Rawiri Wharemate, named the study before he died in 2021.
The inspiration to undertake this study was informed by the death of the principal investigator’s 1-day old mokopuna, Te Minaora Raukawa, during Alert Level 4. Mr Rawiri Wharemate and the Te Ārai Kāhui Kaumātua supported the need for this COVID-19 study.
The COVID-19 pandemic imposed restrictions upon the movement of New Zealanders unlike any the country has previously experienced. Significant numbers of New Zealanders experienced a whānau death during lockdown at Alert Levels 3 and 4. Health services were disrupted and many people died without having whānau present due to visitor bans in hospitals, hospices and Aged Residential Care facilities.
The Te Ārai Kāhui Kaumātua and research team was led by Dr Tess Moeke-Maxwell. The team gained a Health Research Council COVID-19 grant to explore gaps in palliative care service provision during the COVID-19 pandemic. We wanted to identify what supported whānau to care for someone at the end of their life and what helped with bereavement and conducting tangihanga during COVID-19 Lockdown. We also interviewed funeral directors and Māori health professionals to hear their views. We employed photographers to photograph whānau storytellers to inform the virtual online exhibition and also the exhibition book.
Findings
The Rapua te Mārama study will share new knowledge about whānau end of life experiences during the COVID-19 pandemic. Over the next year we will upload the study findings as we analyse the data. We will share information to showcase how whānau adapted their tikanga to navigate one of the most difficult situations New Zealanders have encountered.
Research participants
The team interviewed 25 whānau, 17 funeral directors, 21 health professionals and two community leaders about dying, tangihanga and bereavement during COVID-19 Lockdown. Over 100 people were interviewed in total. Whānau storytellers are not confidential participants in the study. Funeral directors and Māori health professionals are confidential participants. We had 8 research sites: Mid-North, Aotea, Great Barrier Island, Auckland, Tauranga, Hawkes Bay, Wellington, Motueka, and Southland/Central Otago.
Photographic exhibition
The photographic exhibition ‘Rapua te Mārama – Whānau reflections on life and death during COVID-19 Lockdown’ is featured on the Te Ipu Aronui website. The exhibition shares intimate whānau stories about end of life and loss during COVID-19 Lockdown. We will publish an exhibition book to share with whānau participants, hospices and libraries in 2022. An exhibition book (PDF version) will be available to download at the end of the study (Feb, 2023).
The team
The Rapua te Mārama study was led by Dr Tess Moeke-Maxwell with co-investigators, Professor Merryn Gott, Mrs Kat Mason, Dr Lisa Williams, Mrs Whio Wharemate Hansen, Dr Tatiana Tavares, Professor Linda Waimarie Nikora, Dr Melissa Carey, Dr Jackie Robinson, and Professor Janine Wiles. Research assistance was provided by Nette Scurr. Ali Taheri designed the virtual exhibition with support from Dr Tatiana Tavares and with support from his team.
The Rapua te Mārama team operated under the cultural guidance of the Te Ārai Kāhui Kaumātua; Andy Peters, Whio Wharemate Hansen, Joe Naden, Donna Kerridge, Kiripai Kaka, Tina Parata, Aaron Ngawaka, Lexy Ngawaka, Ash Puriri, Te Kauri Wihongi and Walter Thompson.
This study has been made possible by the guidance and leadership of the Te Ārai Kāhui Kaumātua. We acknowledge the valuable role Rawiri Wharemate occupied before he passed away in 2021. Although physically absent from us his presence is gratefully felt. We are grateful his sister Whio Wharemate Hansen has continued to work closely with our team in developing the cultural aspects of our project. We are indebted to her.
We are grateful to the New Zealand Health Research Council for awarding us the funding to lead the Rapua te Mārama study (2021-2023). Without their support this study would not be possible.
Our stakeholders
The project has received encouragement and support from Hospice NZ, Hospice Mid-North, Waipuna Hospice, Cranford Hospice and Mary Potter Hospice, the National Hauora Coalition, Te Ohu Rata o Aotearoa (Māori Medical Practitioners Association), Te Rōpū Taki Māori Committee to Hospice New Zealand, the Māori Health Outcomes Health Quality & Safety Commission, the Funeral Directors Association of New Zealand, and Māori hauora and community groups. We are grateful for your continued support of our research work.
Creative Arts Team
Our creative arts team includes Dr Lisa Williams, Dr Tatiana Tavares, and Mr Ali Taheri. Lisa over saw the creative project development. Tatiana provided the graphics for this book with cultural guidance from Whio Wharemate Hansen, Tess Moeke-Maxwell, Kat Mason and the Kāhui Kaumātua as well as Professor Merryn Gott, Associate Professor Janine Wiles, Professor Linda Nikora, Dr Melissa Carey, and Dr Jackie Robinson. Tatiana designed a new font to compliment the cultural theme of the exhibition book. Ali designed and produced the virtual photographic exhibition.
We would like to acknowledge Mr Ali Taheri for producing the Rapua te Mārama interactive virtual exhibition site. Ali worked closely with Tatiana, Lisa, Tess, Whio and Kat to create the landscape concept. Ali developed the site, including the production of 20 individual indigenous plants native to Aotearoa. The online exhibition can be viewed on this website by clicking here.
Matariki theme
The vision for the exhibition drew on the theme of Matariki (Māori Luna New Year). The Te Ārai Kāhui Kaumātua provided the guidance and approval for this vision in consultation with Mr Rikki Solomon. We are grateful to Professor Rangi Matamua for his inspirational book, Matariki.
Photographers
We engaged photographers to work with whānau in each location. We are very grateful to Eddison Te Reo, Erica Sinclair, Adele Krantz, Melissa Banks, Putaanga Waitoa, Porena Douglas, Chevron Hassett and novice photographer Angela Angel for their photographic knowledge, talent, and skill.
Whānau stories
The exhibition stories belong to the whānau storytellers and reflect their experiences. Tess Moeke-Maxwell and Kat Mason are grateful the whānau entrusted them to co-produce the stories for the exhibition. Kat wrote the stories for the Matthews, McLeod, and Hamilton whānau. Tess wrote the stories for the Hedger, Jones, Wilson, McIntyre, Onekawa, Thompson, Kahi, Cleave, Hollis, Raukawa, McDonald, Kaeo, Sheeran, Kershaw, Te Moana, Shaw, Rogers, Huirama, Adams, and Ryan whānau.
Community Collaborators
We are very grateful to our community collaborators; Belinda Watkins, Arena and Hana Munro and (Mid-North) and Mid-North Hospice; Tina Parata; Richard Thurlow and Waipuna Hospice; Katie Durbin; Janice Byford and Cranford Hospice, Linda Olsen, and Te Omanga hospice; Tony Paine, Vanessa Eldridge, and Mary Potter Hospice; Gaynor Rikihana-Tākao; Rodney Ngawaka and Kawa Marae Committee, Aotea Great Barrier Island.
Donna Kerridge
(Waikato te Iwi)
Donna Kerridge is a rongoā Māori practitioner and policy advocate, with a background in Health Science.
Dr Lisa Williams
Lisa Williams is a research fellow in the School of Nursing. Her research interests are palliative care and end of life and the dissemination of research findings using the creative arts.
Associate Professor Janine Wiles
Janine is a geographer and gerontologist who works in the School of Population Health at The University of Auckland. Her research and teaching work focuses on care, community, place, ageing well, qualitative research methodologies, and a contextual and critical approach to resilience. She is a pākehā woman who grew up in Tokoroa in the South Waikato.
Katie DurbinOn the left in photo
Hi I am Katie Durbin, Clinical Nurse Specialist at Cranford Hospice Hastings. I am originally from Somerset in the UK and have lived in Hawkes Bay since 2005 with my husband and 2 children.
My part in the Pae Herenga study has been as a Regional Community Research Collaborator. This study has opened my eyes to Māori culture and made a hugely positive impact on my practice, but also my understanding of the importance of Māori rituals and customs. Thank you Tess and team.
Professor Linda Nikora
(Te Aitanga a Hauiti and Ngāi Tūhoe descent)
Linda Waimarie Nikora is a New Zealand psychology academic. She is a Named Investigator on the Pae Herenga study.
Mary Potter Hospice
Vision: That people in our communities who need palliative care have access to compassionate and quality care, where and when they need it. We take a whole person approach, we will provide and promote high quality specialist palliative care, grief support, education and planning services. Working alongside our health partners, we aim to make a difference in the communities we serve.
Professor Merryn Gott
Professor Merryn Gott is the director of Te Ārai Palliative Care and End of Life Research Group (https://tearairesearchgroup.org/). Merryn set up the Te Ārai research group in collaboration with her colleagues in 2014 (most of us are from the School of Nursing, University of Auckland).
Nette Scurr (BNurs)
Nette Scurr, featured with Matua Walter Thompson (kaumātua, Te Ārai). Nette has a nursing background in palliative care and was a research assistant on the Pae Herenga study.
Rawiri Wharemate
(Ngāpuhi, Ngāti Porou, Tainui, Ngāti Pukenga descent)
Rāwiri is the founding kaumātua and advisor for the Te Ārai Palliative Care and End of Life Research Group, School of Nursing, University of Auckland. He is of Ngāpuhi, Ngāti Porou, Tainui, Ngāti Pūkenga descent. Rawiri also has extensive experience in the Child and Youth Mental Health fields.
Tess Huia Moeke-Maxwell
Kia ora, my name is Tess Huia Moeke-Maxwell (Ngāi Tai ki Tāmaki Makaurau & Ngāti Porou). Following on from my post-doctoral investigation (2009 - 2012) on Māori end of life experiences, I’ve worked in the School of Nursing, University of Auckland, as a Research Fellow and a founding member of the Te Ārai Palliative Care and End of Life Research Group. In 2017 I was awarded a project grant from the Health Research Council of New Zealand to lead the Pae Herenga study. The Kāhui Kaumātua Rōpū for Te Ārai asked me to lead a study to gather information about the traditional care customs whānau manaaki (family carers) use to care for their kaumātua (older person) at the end of their life, and to share this with Māori whānau who will be called on to provide care to their kaumātua. We also wanted to share this information with Hospice New Zealand, palliative care professionals as well as health and social care professionals more broadly. We are grateful to Hospice NZ for supporting this study since its inception.
The Pae Herenga study is important as there is an anticipated rise in older Māori deaths over the next thirty years; we need to prepare ourselves for the privilege of caring for our kaumātua. On behalf of my team, I would like to thank each and every person and whānau who took part in the Pae Herenga study. Without everyone’s support we would not have been able to complete this piece of work.
He rau ringa oti ai.
Many hands make light work.
Vanessa Eldridge
(Ngāti Kahūngunu and Rongomaiwahine)
Vanessa has a background in nursing and now leads a diverse work programme at Mary Potter Hospice in Wellington. She has developed innovative programmes with Māori health providers around understanding cancer, caring for whānau at home and loss and grief. She leads the Hospice’s compassionate communities work.
Vanessa is Wellington born and of Rongomaiwahine and Ngāti Kahungunu descent. She has two sons and lives in Wellington, Aotearoa New Zealand.
Andy Peters
Andy Peters (Ngā Puhi, Ngāti Kahu) is a member of the Te Ārai Kāhui Kaumātua Advisory Group. He is also the President of the NZ Vietnam Veterans' Association. Andy cares deeply about the welfare of veterans and he is a passionate advocate on their behalf.
Whio Wharemate Hansen
Whio Wharemate Hansen (Ngāpuhi, Tainui, Ngāi te Rangi, Te Arawa & Waikato Tainui) is a kuia for the Te Ārai Kāhui Kaumātua Advisory Group. She is a founding member who has provided cultural advice and support across the Pae Herenga study and the Te Ipu Aronui website development. Whio uses her knowledge as a kai whakaruruhau in her work with whānau, hapū and iwi to empower and cause oranga (wellbeing/wellness).
Melissa Carey
Dr Melissa Carey (Ngāti Raukawa, Ngāti Huri) has worked as a registered nurse for over 20 years practising within the acute clinical setting in regional and rural Australia. Since 2006 Melissa has been employed within the tertiary education sector where she has developed and delivered various nursing education programmes for undergraduate and post graduate students. Completing a PhD in 2016 at Queensland University of Technology, Melissa is an emerging health researcher with experience in Ethnographic, Auto-ethnographic and Kaupapa Māori research methodologies. Her research areas include Indigenous knowledge and research, creativity and health education, cultural recovery and healing, cultural safety, cultural needs at end-of-life and healthy ageing for Māori. In 2020 Melissa commenced a Postdoctoral Māori Career Development Fellowship funded by the Health Research Council New Zealand and the University of Auckland within the School of Nursing. The focus of this research is to develop and pilot a compassionate community toolkit for healthy ageing and end of life care for Māori people in South Auckland.