by Lisa Williams
Can digital stories go where palliative care has never gone before?
A couple of years ago Tess Moeke-Maxwell (Ngai Tai) and I were tooling around a beautiful part of New Zealand conducting interviews for Te Pākeketanga: Living and Dying in Advanced Age, our research group’s Health Research Council NZ-funded study led by Merryn. We discussed many things, such as Tess’ collection of temuka pottery, (described on their website as being ‘pure New Zealand heritage’ — never mind the hyperbole) where to find the best cafe for lunch (Tess knows; Tess always knows) and whether or not we should stop for fresh blueberries before or after our next interview.
Our words floated out the open windows and into the ears of the locals: tui, piwakawaka and kereru as well as the imports — cows, sheep and possums. Not unlike New Zealand’s country roads, such lighthearted conversations curved, twisted and double-backed on themselves intertwining with the profound observations our research participants had imparted with our own questions about and hopes for palliative care.
On one such trip we got to talking about Māori and storytelling. The great oral traditions. The reverence for skilled orators. And wondered how we might create space for them in an end of life research project.
Fast forward a few weeks and we’re sitting in Associate Professor Shuchi Kothari’s office asking for advice. Shuchi, a filmmaker and member of the University’s Arts Faculty, taught me scriptwriting several years ago. She filled us in on ‘digital storytelling’, a method to help people craft videos in their own voice about stories of deep personal significance to them. Shuchi and her long-time collaborator Associate Professor Sarina Pearson, had been busy making digital stories with people in the Pacific region, recently visiting Tonga and Fiji.
Thanks to a grant from the School of Nursing, we were able to work with Shuchi and Sarina, as well as Peter Simpson, their master technician, to create digital stories with Māori about their experiences caring for their kaumātua (esteemed older relative) at the end of life. On Valentine’s Day weekend 2015, eight people, supported by their whānau (family, including extended family) gathered to make stories.
Under Tess’s guidance and that of our research group’s kaumātua, we adapted the digital storytelling method to include Māori protocol. Tess and co-researcher Stella Black (Ngāi Tūhoe) participated in the workshop, creating their own stories and thereby walking alongside the other participants, a Kaupapa Māori research process that Russell Bishop describes as
. . . being involved somatically in the research process; that is, physically, ethically, morally and spiritually and not just as a ‘researcher’ concerned with methodology but as a participant concerned with the well-being of the participants.*
The stories they produced (you can watch them all here) are heartfelt testimonies to the love and care our participants provided for their relatives. Not only that, they’ve become valuable resources for teaching and training. Tess and Stella added video commentaries for each story, offering guidance for health professionals working with Māori.
Yet their significance extends even beyond these uses, which we outline in our new open-source paper, Can digital stories go where palliative care has never gone before? just published by BMC Palliative Care. As we all know, the need for palliative care among the oldest old is on the rise worldwide and many disparities exist amongst countries’ ability to provide it. Discovering how best to help means developing new research methods that fit diverse circumstances. Digital stories is a method worthy of consideration. As we found, its flexibility suited our Māori participants and may well be of value for other indigenous or similarly under-represented groups exploring palliative care.
For more on digital storytelling in research, check out this brand spanking new systematic review by de Jager et al.
*Bishop R. Indigenous methods in qualitative educational research. In: Delamont S, editor. Handbook of qualitative research in education Cheltenham. UK: Edward Elgar; 2012. p. 126–40.