Poignant and moving, digital stories made by Māori families about caring for loved ones at the end of their lives are giving voice to communities who don’t always have easy access to palliative care or hospice to ease those difficult times.

“These stories help disadvantaged or socially excluded groups share their experiences,” says Professor Merryn Gott from the University of Auckland’s School of Nursing.

“They are being heard within their wider communities, by health professionals and policy makers, which is an important first step to ensuring they receive better support. We have also found completing a story helps individuals make sense of what is, inevitably, a very difficult time in their life.”

The method is now being used worldwide and has particular appeal for indigenous, marginalised groups who can tell their stories in their own words, rather than having it told, refracted, through the mainstream.

The stories bring comfort on other levels too.

Says Professor Gott: “They serve as a vehicle for health literacy and are taonga for our research participants – a way they can give back to the community. They have also been used to start conversations within communities about end of life care, for example, in helping people think about the potential benefits of completing an advance directive, or living will.”

The video above features excerpts from digital stories made by families after the deaths, in both cases, of much-loved mums. The cultural depth of these, and other stories, has made them useful tools for teaching undergraduate and graduate nurses, and other healthcare professionals, for example, hospice staff who are working with kaumatua.

Working bi-culturally is the focus for Professor Gott and her team on the Te Arai Palliative Care and End of Life Research Group at the School of Nursing, of which she is director.

“The very English model of hospice and palliative care was originally adopted largely uncritically in New Zealand. But given the bi-cultural context of this country, we need to know what Māori want at end of life and how services can be better directed to meet their needs,” she says.

Originally, the digital story project was a small part of this research programme, but it has had a huge impact.

“It has been beyond our expectations,” says Professor Gott. “The stories are being used across New Zealand, both within Māori communities and for teaching, and are being picked up internationally. For example, teams in Australia are looking at replicating the idea in Aborigine communities.”

She took the story of the Te Arai research to the UK in June and has been invited to talk about the work by British universities and health providers including Oxford and Cambridge universities and St Christopher’s Hospice, which was the first hospice to be founded in the world.

Professor Gott believes it is the bi-cultural emphasis of the Te Arai research that has brought overseas interest and she understands the group is unique in the world for working with this focus. She believes this focus, which the group apply in all their research, puts the needs and aspirations of people with a life-limiting illness and their family and whānau carers truly at the centre of any discussions about service improvements.

She has been researching palliative and end of life care for more than 20 years after volunteering in a hospice for people with HIV/AIDS when she was a teenager.

“My commitment to this area has been increased by seeing so many people who don’t have the end of life experience we would all aspire to. We don’t always like to admit it but the need for end of life care comes to us all. I believe it’s the mark of a civilised society that, at that time, we should all be able to expect excellent care in whatever setting we die.

She predicts her team’s research will impact in many different ways, from influencing policy and the education of health professionals to working directly with communities to improve end of life care within their particular context.

Professor Gott Professor Merryn Gott is based at the School of Nursing in the University of Auckland’s Faculty of Medical and Health Sciences. She has received the New Zealand Association of Scientists’ Research Medal for her work and was last year named NEXT Magazine’s Woman of the Year in the health and science category.

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