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P ulkurlkpa: The joy of research in A boriginal communities

2015; Wiley; Volume: 51; Issue: 11 Linguagem: Inglês

10.1111/jpc.13008

1440-1754

Christine Jeffries‐Stokes, Annette Stokes, Lachlan McDonald,

Neonatal and fetal brain pathology

Meaningful research in Australian Aboriginal communities, whether remote or urban, is hard. There is often tension between the world view of Aboriginal people and the academic demands of research. Ideally research should be led by Aboriginal people, but it may be difficult to find people who have seniority in the community and the necessary research, clinical and literacy skills for these leadership roles. The role of the Aboriginal researcher is complex, but critical to success. Aboriginal research team members shoulder responsibility for the research and the actions of the research team in the community, requiring a large amount of trust and commitment from them. The practical problems of conducting research in remote communities may be at odds with the procedures and policies of academic institutions. These issues can be difficult to overcome, but not impossible if sufficient commitment is given to developing relationships and engaging fully with the community. It takes time, often many years, but the rewards for the community, the team members and for research organisations can be great. The Western Desert Kidney Health Project (WDKHP) was conducted in the Goldfields of Western Australia between 2010 and 2014. The WDKHP was developed to investigate the factors contributing to, and associated with the high rates of type 2 diabetes and renal disease in the Goldfields. At the same time, the aim was to develop research skills in the community, while developing community capacity to combat these diseases and contribute to Pulkurlkpa – a deeply soul-felt sense of joy, hope, optimism and resilience. Chief investigators A and B for this project are embedded in the community – they are sisters in law. CIB is a senior woman of the three main tribal groups for the region – the Wongutha, Mulba-Ngadu and Anagu tribes. She is also an accomplished and well known musician and artist. CIA is not Aboriginal and is a doctor. The third member of the development team is a senior Community Arts practitioner, who, although not living in the Goldfields, has long relationship with the community. This team has been working together in research and arts in the region for more than 20 years. The idea for the WDKHP began as a series of conversations at funerals – funerals of community members who had died from renal disease, diabetes or associated complications. The leading cause of avoidable mortality for Aboriginal people in the Goldfields of Western Australia is type 2 diabetes.1 The demand from the community that something be done to prevent this loss of life and potential was brought to our chief investigators as community members with skills and knowledge. During development of the proposal CIB visited every community to ensure wide consultation, in accordance with cultural protocols, and to invite participation. Her cultural standing along with her research experience in this community meant that she was able to identify and talk frankly to senior community members and elders about the difficulties, cultural and practical, in undertaking such an extensive project, and they made meaningful input into the study design. Consultations occurred around campfires, in kitchens over cups of tea, at social events, arts workshops and at formal community workshops. The community consultations identified stress as a very significant factor in poor health and in the development of unhealthy lifestyle practices. Stress was seen to be multifaceted, but largely contributed to by a burden of grief, guilt, anger, frustration and bitterness that many people carry.2, 3 The high levels of stress seemed to contribute to poor motivation and lack of resilience in the lives of many Aboriginal people and communities. There was a lack of 'Pulkurlkpa'. The concept of 'Mara Yungu' was important in the study design – this roughly translates as 'to offer your hand'. It has many overlapping meanings – it can mean the way you offer your hand when meeting someone for the first time, which for the Goldfields and Western Desert tribal groups, also implies an opening of your spirit and a sharing of trust. It can mean offering your hand to help someone, that is 'giving someone a hand' and it describes the process of two-way learning where people contribute different skills or knowledge to solve a common problem. Even if you have never worked with an Aboriginal community before, you are able to cope as you've been shown, you know how to present your hand properly. The WDKHP team spent about a fortnight in each community annually for 3 years, collecting data on health status using a mobile clinic truck equipped with point-of-care machines. These machines were important in addressing the cultural concerns about collection and use of blood and body fluid samples – all samples were consumed by the testing and then disposed of, no samples were sent away or stored. Extensive history was collected from participants and recorded on paper data sheets, usually in a private but open air environment. This was considered important as it demonstrated privacy without secrecy. (Fig. 1 Photo Roman Kutzowitz – data collection occurred in the open air in private, but not secret settings.) Photo Roman Kutzowitz – data collection occurred in the open air in private but not secret settings. The first priority was to get the health messages into a form that would be suitable, attract the interest of community members and support cultural identity and pride. Community arts has community participation and dialogue at its core,8 we had used it successfully for many years.2, 9-13 We chose it as the vehicle for community development, engagement, education and to support the development of resilience. It allowed us to address many issues that would otherwise be beyond the scope of the project and allowed for meaningful reciprocity as well as opportunities for Pulkurlkpa.14 On advice from senior Aboriginal community members, we used the traditional sand drawing technique of Milbindi to explain our plans and the health messages. This technique lent itself to animation. Senior animation artists, with extensive Community Arts experience, were engaged as artists in residence to focus on the children, working through the schools. The Aboriginal researchers brokered culturally sensitive stories, incorporating the key health messages and assisted the visiting artists to identify key community participants, who had cultural authority, who could oversee the arts activities. The children transformed the story into an animated movie using images drawn in sand gathered from their own community (Parna – our country). The stories reflected unique features of the community and translated the health information into a form relevant to each community. At the end of each residency the whole community was invited to the movie premiere, the results of health screening were presented and a healthy supper was served. The creators of the animations were applauded and celebrated. The focus in phase 2 was to consolidate messages and to build capacity and problem solving skills. Sculpture, music and dance were the mediums were used to demonstrate innovative approaches to a problem and a stepwise process to achieve an outcome. In one community the children learned how the kidney functions to filter the blood – so they designed and built a water sculpture demonstrating the important filtering elements (Fig. 2 Photo Matt Scurfield – Kidney Water Sculpture). In another community, where many children reported feeling 'invisible' and where there had been a number of youth suicides, they designed and created aprons showing how kidneys work and then wore these aprons as part of a portrait photography experience demonstrating 'How amazing I can be' (Fig. 3 Photo Matt Scurfield – How Amazing I Can Be – soft sculpture taught skills in innovative problem solving as well as the arts). Choice of art form was decided after consultation with community members about what would be most suitable for their community. Photo Matt Scurfield – Kidney Water Sculpture. Photo Matt Scurfield – How Amazing I Can Be. Change in health behaviours, especially diet, requires major effort and community structural change. An important aspect of the project was to equip community members to advocate for change in their own communities. Singing, especially choral singing, was chosen as the medium because of the health benefits of singing, to give community members the skills and confidence to speak up for their communities, and to build the sense of community and shared purpose.15-20 Choral singing has a long history in Aboriginal communities21 and there was great enthusiasm in the community forums for it to be included. An internationally recognised Choir Master, accompanied by CIB, spent several days in each community conducting singing workshops, with particular focus on the children. Community members then rehearsed by themselves over 6 months. The WDKHP field work culminated with a public performance by the choir, presentation of results to the community and a celebration in the major regional town. (Fig. 4 Photo Matt Scurfield – Turlku Birni Choir Performance). Photo Matt Scurfield – Turlku Birni Choir Performance. Participation in the study was a marker of success of the engagement strategies. Almost 38% of the total population in the study communities, including 80% of the Aboriginal population (n = 1115) enrolled and participated in the study. In some communities, there was 100% participation. More than 2000 people, including all the children in the 10 community schools (n = 1300), took part in the arts activities either as workshop participants or audience. We used a number of different strategies for evaluation of the project – measuring change in health measures over time, questionnaires administered at the time of each data collection, participant observation strategies, targeted interviews and an innovative project using participatory video making. The evaluation strategies and results are reported elsewhere, but in summary, there was only positive feedback from the community except for expressions of dismay that the project was limited to 3 years (Fig. 5). Quotes from Evaluation of the Western Desert Kidney Health Project. There was clear demonstration of the absorption of the messages in the changes observed in the communities. Communities have been able to use the health status information, knowledge and support provided by the WDKHP to advocate for their communities and achieve change – all five towns now have a grocery store with an emphasis on fresh foods, prior to the study fresh fruit and vegetable supply was poor and two towns had no store. Two towns and two communities have planted fruit trees in public gardens. All of the remote community schools and most of the town based schools now have new fruit and vegetable gardening programmes. Wider recognition has been very important in providing kudos and pride for the participants and the communities. The artworks produced during the project demonstrate how the key health messages have been absorbed by the children who created them and communicated to a wider audience. The sand animations particularly demonstrate the translation of the key health messages and have received critical acclaim. They have been widely viewed, via the website (http://www.westerndesertkidney.org.au). 'Alfie the Tooth Fairy' was awarded the MJA Ross Ingram Memorial Competition Prize in 201122 (http://youtu.be/qSGgYIdiai0). The Choir Project has led to the formation of an ongoing choir for the region. The choir was invited to perform at major national arts festival in 2014 (The Fairbridge Festival and the National Regional Arts Summit). Several of the young choir members have been offered places in highly competitive tertiary music and performance courses. A skills development programme is being developed with a tertiary college of the arts to be delivered to the children in the region annually. The WDKHP was awarded 'Good Practice' recognition by Creative Partnerships Australia, a national competitive programme, in 2013. Life in Aboriginal communities can be a rich and rewarding experience if children have resilience and are able to make the most of opportunities. Community arts is a joyful, exciting and engaging method for health promotion, community development and the development of resilience, especially for children. This method can be used to provide immediate, meaningful reciprocity in community based research. Despite the arts residencies being quite short in the scale of our participants lives, they still had potential to contribute to resilience in participants because of their novelty, their intensive nature and their focus on doing something important that would have wide benefit not only for the community, but for a much wider audience, and the kudos and recognition they bring.23 The most important question is probably the most intangible and hardest to measure – did we bring Pulkurlkpa? During the WDKHP we have seen individual and shared joy from participants and research team members. The activities were fun to do, they brought the joy of discovering new talents, especially for the children, the joy of achieving something, the joy of making something and sharing it with others and the joy of recognition from friends, family and the wider community. From joy comes optimism and hope – the essence of Pulkurlkpa.4 The fact that we cannot quantify and test this for statistical significance makes it no less real, or important. Examples of this wonder and joy can be seen on our website (http://www.westerndesertkidney.org.au). Whether this will translate to lasting health benefits will be the subject of other papers and may take many years to determine. Developing long-term relationships with Aboriginal researchers who are embedded in the community, have cultural authority, who understand the cultural nuances and are able to engage the community leaders is critical to research and likely to bring Aboriginal and non-Aboriginal researchers a greater sense of personal Pulkurlkpa. Ethical approval for this project was given by the Western Australian Aboriginal Health Ethics Committee and the University of Western Australia Human Research Ethics Committee. All participants gave their informed consent for participation and specific consent for the publication of images. The Western Desert Kidney Health Team – Annette Stokes, Christine Jeffries-Stokes, Lachlan McDonald, Rachel Burgess, Andrew Hughes, Ruth Kelly, Samuel Stokes, Robin Kelly, Pearl Scott, Albert McKenzie, Adrian Schultz, Elizabeth Huriwai, Sharon Evans, Craig Sinclair, Emma Lalor, Katherine Stokes, Nick Larkins, Gemma Baines, Jeanne Daly, Linda Anderson, Priscilla Robinson and the staff of the Rural Clinical School of the University of Western Australia. The Communities – Laverton Community, Mt Margaret Community, Mulga Queen Community, Leonora Community, Menzies Community, Kurrawang Community, Coolgardie Community, Norseman Community, Coonana Community, Coolgardie Community, Tjuntjuntjarra Community and Wongutha Birni Aboriginal Corporation. We would especially like to acknowledge the community leaders, the schools and the health service staff in each of these communities. The artists – Steve Aiton, Ken Allen, Clare Bailey, Alison Dimer, James Gentle, Catherine Howard, Francis Italiano, Peter Keelan, Ruth Koedyk, Martin Meader, Phillipa O'Brien, Evelyn Roth, Suri Bin Saad, Matt Scurfield, Nalda Searles, Leticia Shaw, Rodney Stratton, Poppy Van Ord Granger and Cecile Williams. The Volunteers – Chong Chui Han, Ruth Monck, Lorraine Sholson, Katherine Stokes, Geoffrey Stokes, Rebecca Stokes, Ada Stokes, Milly-anna Stokes, Tom Volkman, Anna Wills and Khiang Wai. The Students of the Rural Clinical Schools of the University of Western Australia, The University of Notre Dame and The University of Tasmania. Delivery Partners – The Rural Clinical School of WA, The University of Western Australia, The University of Notre Dame, Bega Garnbirringu Health Services Corporation, The Goldfields Midwest Medicare Local and The West Australian Country Health Service. Funding: Corporate Partner – BHP Billiton Nicklewest; Government Partners Australian Government Department of Health and Aging, The Australia Council for the Arts, Western Australian Department for Culture and the Arts, Healthway – The Health Promotion Foundation, Royalties for Regions, Lotterywest; and Philanthropic Partners JT Reid Foundation, Southern Cross Goldfields LTD, Cape2Cape Motorcyclists. Jan Payne, Carol Bower and Deborah Lehmann from the Telethon Kids Institute, and Shantidani Minz from Christian Medical College, Vellore for their support and expert advice. Campbell Murdoch and Phil Reid for their vision and support.