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Study seeking to develop and protect Māori end-of-life care

Study seeking to develop and protect Māori end-of-life care

A three-year study by the University of Auckland will seek to discover and strengthen Māori traditional end-of-life care practices to protect them for the future; this will have benefits for whānau carers, iwi and the health and palliative care sectors.

The study, Pae Herenga: An investigation of Māori whānau end-of-life cultural care customs, will be led by Dr Tess Moeke-Maxwell of the University’s School of Nursing and the leading Māori palliative care researcher in New Zealand. The Pae Herenga team includes Te Ārai Kaumātua Rōpū advisors and researchers with expertise in palliative care, rongoā, health literacy and Kaupapa Māori research.

“Currently there is little research examining how Māori end-of-life care tikanga are contextualised within lived experience and how whānau caregiving responds to the social context,” Tess says.

“The study will investigate the traditional end-of-life Māori care customs that whānau draw on to strengthen their end-of-life caregiving activities and support palliative care services.

“We will identify the barriers and facilitators that Māori participants experience to using these care customs within different care settings of the home, hospice, hospital and aged residential care facilities.”

Integral to the project will be the spiritual guidance of kaumātua including University of Auckland kaumātua, Rawiri Wharemate.

He sees the study as a way of protecting and maintaining traditions for future generations.

“Mine has been an overall goal, to serve Maori, and it’s been a goal I’ve had for a long, long time, but it’s probably become crystalized because I am starting to see my friends pass away.

“They were certainly influential in my life, but what could have been done differently that we can anticipate in terms of increasing the quality of working towards death and how that looks? That’s been my drive.”

He is also wanting to protect the “great treasures our people have left us and we have a responsibility to carry those things to the end”.

“I’ve felt the influence of the western model of thinking and structures for society which has greatly diminished what I consider tapu korero or tapu statements that have been made by our people that have gradually been falling out of the ears and the memories of us as a people,” he says.

The need for action is getting more urgent given the projected number of Māori deaths is expected to increase by 48 percent between 2016 and 2038.

A recent NZ palliative care needs assessment concluded that approximately three quarters of people die an expected death from an existing chronic condition and would benefit from palliative care. It also highlighted that, because of health disparities, Māori are more likely to die with palliative care needs than the NZ European population. It is therefore worrying that current research indicates that Māori are less likely to die in a hospice than NZ Europeans.

However, New Zealand palliative care services are informed by a Western understanding of “a good death” which does not always reflect diverse Māori perspectives despite the intention that these services should consider the whole person and whānau.

The project is being funded by the Health Research Council. Face-to-face interviews in te reo and English will be used and recorded and transcribed with 20 Māori rongoā and spiritual practitioners, 20 Māori palliative care providers and 20 whānau (carers and members with a life limiting illnesses) from four key sites or ‘community collaborations’ with local kaumātua in Keri Keri, Hawkes Bay, Wellington and Porirua and Whanganui.

Interviews will focus on each group’s diverse experiences, observations, practice/s and utilisation of tikanga and kawa. How these customs strengthen whānau end-of-life caregiving activities and the potential barriers to their utilisation within different care settings will be investigated. A combined Kaupapa Māori and constructivist analysis will inform a robust thematic analysis of the data.

The community collaborators will invite 20 families in each region to discuss and share their experiences in end-of-life care.

In addition to written publications the study will also develop a DVD of digital stories, commentaries following each story and extracts of participants’ audio narratives, information on cultural care customs, helpful palliative care information and peer reviewed articles. The resource will share information about care customs with diverse Māori whānau, their communities and the palliative care sector.

Dr Moeke-Maxwell says: “It might be a well-worn adage, but I am positive that if we get this right for Māori whānau we will get it right for all families.”


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