Merryn Gott presents her participatory research into community palliative care

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Professor Merryn Gott

I met David more years ago than probably either of us care to remember, when I was appointed to my first research post at the University of Sheffield. We have both moved since then – I’m now in New Zealand and David obviously in Dumfries – so it was great to be invited to visit his research group.

The visit also gave me an opportunity to reconnect with Naomi, who I’d worked with in Sheffield on projects exploring visual images of ageing for older women and transitions to palliative care in acute hospitals. We had been wanting to collaborate on a new project for a number of years which drew on our experiences of using visual methods and addressed our interest in meanings of ‘home’ at the end of life.

Meeting in person let us finalise our ideas and get them down on paper. A first workshop with service users to gain feedback on our initial ideas will be held later in the year and then Naomi will interview other key stakeholders in Scotland. If you live locally and are interested in participating, please let Naomi know.

I’m based in New Zealand. I direct the Te Arai Palliative Care and End of Life Research Group based at the University of Auckland. During my visit I took the opportunity to share a little bit about our research and present one strand of our work programme, focused on the experiences, and work, of family carers at the end of life.

I started my presentation by describing a little bit about the New Zealand context. Thinking of New Zealand may bring to mind sheep, Lord of the Rings and Sauvignon Blanc! However, what is less well known is that, according to a study by the Economist, New Zealand is actually the third best place to die. However, in line with many other countries, we face challenges in terms of rapid increase in demand for palliative care in the short to medium term. New policy directions highlight the need to build the capacity of family carers and communities to contribute to palliative care, but more evidence is needed to determine what strategies would help achieve this. In particular, our priority if generating more evidence aligned with the bicultural context of New Zealand society.

The Treaty of Waitangi, signed in 1840 between Māori and the Crown, is underpinned by the principles of ‘partnership, protection, and participation’ and forms the basis of the contemporary relationship between Māori and the government. The need to ensure health services, and in our particular context palliative care services, are culturally in line with the aspirations of Māori is a priority. My research group is explicitly set up along bicultural lines and is, as far as we know, the only bicultural palliative care research group in the world (although we’d love to hear of others).

Supported by our kaumatua roopu (Māori elder advisory group), we have developed an ethical framework to promote the safe inclusion of Māori in all stages of our research, from inception to dissemination. One thing I reflected on is how this process has prompted us to think about the opportunities Māori have to determine the nature, conduct, and output of the research.

This relates to issues of power. I argued power is not adequately considered, and certainly under-theorised, within the Patient and Public Involvement (PPI) literature. Indeed, those with an interest in PPI may find much of interest in writing about indigenous methodologies.

To explore the needs of family carers, I drew on our recently completed project ‘Te Pakeketanga: Living and Dying in Advanced Age’, funded by the New Zealand Health Research Council. We worked with the LiLACs NZ longitudinal study of ageing to explore the end of life circumstances of Māori and non-Māori dying in advanced age.

We are working on developing new methods of dissemination and so our first two outputs were films: a short overview of our key findings, and a film where actors deliver narratives from our interviews. Papers from the project are still in progress, but interesting findings are emerging regarding the work of carers. We have highlighted in particular family work in relation to care navigation, the limits of ‘community’ for people dying in advanced age, and the ways in which people in advanced age exercise autonomy at end of life (through routes other than Advance Care Planning). Watch this space!

Our bicultural framework guides our research with all participants, not just Māori, and has directed us more and more to the use of participatory methods. I demonstrated this in the final section of my talk, presenting resources developed in collaboration with family carers from three different cultural groups: Māori, Pacific Island, and New Zealand European. I went into these projects with quite set ideas about what family carers might want and need to support their caring work – thinking immediately of practical information around caring of the type found on many professionally developed carer websites.

However, the real value of participatory methods is that they take you beyond your own expectations and experience. For example, as an academic I never imagined that one day I may be involved in the production of a music video, but this is the resource we co-produced with Pacific Island Carers in a project led by Dr Ofa Dewes and Dr Lisa Williams.

The video draws on the narratives of the family carers themselves, as well as stars some of them, and is proving a very valuable prompt to discussion of end of life issues in Pacific communities. It particularly highlights the need for others to offer help to family carers; the use of the music video was to ensure that this message will reach younger people as well. Ofa and our colleague Evan have produced a commentary on the video that provides useful context.

Ros Capper’s book, the Accidental Carer, is another innovative resource for carers, which our group has supported. Containing practical tips for caring drawn from Ros’s experience and that of five other family and whānau, the book is innovative in sharing the experience and wisdom of ‘those who have done before’.

For example, Ros highlights the need to continue ‘honest conversations’ in times of ‘plateauing’ when the illness has stabilised. Ros’s website contains more information about the book and other information, includinng a 30 minute Radio NZ interview Ros gave containing some really interesting reflections on her experience of caring for her husband, Mike, and her interactions with health services.

If you have an interest in how family carers can better support themselves, and be supported by others, I’d also really recommend purchasing a copy.

I also presented a digital story Māori whānau (extended family) involved in end of life caregiving had produced with our support. Digital storytelling is a method that can make visible the experiences of people who are often under-represented not only within mainstream media, but also within palliative care research. Dr Lisa Williams, Dr Tess Moeke-Maxwell and Stella Black worked in collaboration with colleagues from the Faculty of Arts, Dr Shuchi Kothari and Dr Sarina Pearson, to explore whether this method would be acceptable to Māori whānau as a means of sharing their end of life caregiving experience.

We found that, not only was it acceptable, but it was highly successful both as a means of conveying their experience, but also in other ways. For example, the stories have proved a useful prompt to initiate, and support, discussions about end of life issues amongst Māori, health professionals, and our nursing undergraduate and postgraduate students. All the digital stories produced can be seen on our snappily entitled Palliative Care Research TV YouTube channel.

Lisa has also led a paper and a book chapter discussing how they were developed and how they are now being used. They are being used widely as resources to promote discussion of culturally competent care in New Zealand and internationally, and, as with all our resources, please do use them if you would like to. We’d love to hear how you get on.

I finished by pointing people to our Te Arai blog which also has links to all the digital resources I presented, as well as a few more. You can subscribe to be kept up to date with our work.

I am hoping that the photographs of some of our gorgeous NZ landscape will tempt Scottish-based researchers to visit us and find out more. And I look forward also to continued collaboration with David and Naomi.

You can read more about my current collaboration with David, exploring the imminence of dying amongst people in hospital in Scotland, New Zealand, and Denmark and you can watch video or download audio of a presentation I gave in Glasgow on the subject in June 2017.

Merryn Gott

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