Christine Jeffries?Stokes|Annette Stokes|Lachlan McDonald
<scp>P</scp>ulkurlkpa: The joy of research in <scp>A</scp>boriginal communities
University of Western Australia|University of Western Australia|University of Western Australia
meaningful research australian aboriginal communities whether remote urban hard often tension world view aboriginal people academic demands research ideally research led aboriginal people may difficult find people seniority community necessary research clinical literacy skills leadership roles role aboriginal researcher complex critical success aboriginal research team members shoulder responsibility research actions research team community requiring large amount trust commitment practical problems conducting research remote communities may odds procedures policies academic institutions issues difficult overcome impossible sufficient commitment given developing relationships engaging fully community takes time often many years rewards community team members research organisations great western desert kidney health project wdkhp conducted goldfields western australia 2010 2014 wdkhp developed investigate factors contributing associated high rates type 2 diabetes renal disease goldfields time aim develop research skills community developing community capacity combat diseases contribute pulkurlkpa deeply soulfelt sense joy hope optimism resilience chief investigators b project embedded community sisters law cib senior woman three main tribal groups region wongutha mulbangadu anagu tribes also accomplished well known musician artist cia aboriginal doctor third member development team senior community arts practitioner although living goldfields long relationship community team working together research arts region 20 years idea wdkhp began series conversations funerals funerals community members died renal disease diabetes associated complications leading cause avoidable mortality aboriginal people goldfields western australia type 2 diabetes1 demand community something done prevent loss life potential brought chief investigators community members skills knowledge development proposal cib visited every community ensure wide consultation accordance cultural protocols invite participation cultural standing along research experience community meant able identify talk frankly senior community members elders difficulties cultural practical undertaking extensive project made meaningful input study design consultations occurred around campfires kitchens cups tea social events arts workshops formal community workshops community consultations identified stress significant factor poor health development unhealthy lifestyle practices stress seen multifaceted largely contributed burden grief guilt anger frustration bitterness many people carry2 3 high levels stress seemed contribute poor motivation lack resilience lives many aboriginal people communities lack pulkurlkpa concept mara yungu important study design roughly translates offer hand many overlapping meanings mean way offer hand meeting someone first time goldfields western desert tribal groups also implies opening spirit sharing trust mean offering hand help someone giving someone hand describes process twoway learning people contribute different skills knowledge solve common problem even never worked aboriginal community able cope youve shown know present hand properly wdkhp team spent fortnight community annually 3 years collecting data health status using mobile clinic truck equipped pointofcare machines machines important addressing cultural concerns collection use blood body fluid samples samples consumed testing disposed samples sent away stored extensive history collected participants recorded paper data sheets usually private open air environment considered important demonstrated privacy without secrecy fig 1 photo roman kutzowitz data collection occurred open air private secret settings photo roman kutzowitz data collection occurred open air private secret settings first priority get health messages form would suitable attract interest community members support cultural identity pride community arts community participation dialogue core8 used successfully many years2 913 chose vehicle community development engagement education support development resilience allowed us address many issues would otherwise beyond scope project allowed meaningful reciprocity well opportunities pulkurlkpa14 advice senior aboriginal community members used traditional sand drawing technique milbindi explain plans health messages technique lent animation senior animation artists extensive community arts experience engaged artists residence focus children working schools aboriginal researchers brokered culturally sensitive stories incorporating key health messages assisted visiting artists identify key community participants cultural authority could oversee arts activities children transformed story animated movie using images drawn sand gathered community parna country stories reflected unique features community translated health information form relevant community end residency whole community invited movie premiere results health screening presented healthy supper served creators animations applauded celebrated focus phase 2 consolidate messages build capacity problem solving skills sculpture music dance mediums used demonstrate innovative approaches problem stepwise process achieve outcome one community children learned kidney functions filter blood designed built water sculpture demonstrating important filtering elements fig 2 photo matt scurfield kidney water sculpture another community many children reported feeling invisible number youth suicides designed created aprons showing kidneys work wore aprons part portrait photography experience demonstrating amazing fig 3 photo matt scurfield amazing soft sculpture taught skills innovative problem solving well arts choice art form decided consultation community members would suitable community photo matt scurfield kidney water sculpture photo matt scurfield amazing change health behaviours especially diet requires major effort community structural change important aspect project equip community members advocate change communities singing especially choral singing chosen medium health benefits singing give community members skills confidence speak communities build sense community shared purpose1520 choral singing long history aboriginal communities21 great enthusiasm community forums included internationally recognised choir master accompanied cib spent several days community conducting singing workshops particular focus children community members rehearsed 6 months wdkhp field work culminated public performance choir presentation results community celebration major regional town fig 4 photo matt scurfield turlku birni choir performance photo matt scurfield turlku birni choir performance participation study marker success engagement strategies almost 38 total population study communities including 80 aboriginal population n 1115 enrolled participated study communities 100 participation 2000 people including children 10 community schools n 1300 took part arts activities either workshop participants audience used number different strategies evaluation project measuring change health measures time questionnaires administered time data collection participant observation strategies targeted interviews innovative project using participatory video making evaluation strategies results reported elsewhere summary positive feedback community except expressions dismay project limited 3 years fig 5 quotes evaluation western desert kidney health project clear demonstration absorption messages changes observed communities communities able use health status information knowledge support provided wdkhp advocate communities achieve change five towns grocery store emphasis fresh foods prior study fresh fruit vegetable supply poor two towns store two towns two communities planted fruit trees public gardens remote community schools town based schools new fruit vegetable gardening programmes wider recognition important providing kudos pride participants communities artworks produced project demonstrate key health messages absorbed children created communicated wider audience sand animations particularly demonstrate translation key health messages received critical acclaim widely viewed via website httpwwwwesterndesertkidneyorgau alfie tooth fairy awarded mja ross ingram memorial competition prize 201122 httpyoutubeqsggyidiai0 choir project led formation ongoing choir region choir invited perform major national arts festival 2014 fairbridge festival national regional arts summit several young choir members offered places highly competitive tertiary music performance courses skills development programme developed tertiary college arts delivered children region annually wdkhp awarded good practice recognition creative partnerships australia national competitive programme 2013 life aboriginal communities rich rewarding experience children resilience able make opportunities community arts joyful exciting engaging method health promotion community development development resilience especially children method used provide immediate meaningful reciprocity community based research despite arts residencies quite short scale participants lives still potential contribute resilience participants novelty intensive nature focus something important would wide benefit community much wider audience kudos recognition bring23 important question probably intangible hardest measure bring pulkurlkpa wdkhp seen individual shared joy participants research team members activities fun brought joy discovering new talents especially children joy achieving something joy making something sharing others joy recognition friends family wider community joy comes optimism hope essence pulkurlkpa4 fact cannot quantify test statistical significance makes less real important examples wonder joy seen website httpwwwwesterndesertkidneyorgau whether translate lasting health benefits subject papers may take many years determine developing longterm relationships aboriginal researchers embedded community cultural authority understand cultural nuances able engage community leaders critical research likely bring aboriginal nonaboriginal researchers greater sense personal pulkurlkpa ethical approval project given western australian aboriginal health ethics committee university western australia human research ethics committee participants gave informed consent participation specific consent publication images western desert kidney health team annette stokes christine jeffriesstokes 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 staff rural clinical school university western australia 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 wongutha birni aboriginal corporation would especially like acknowledge community leaders schools health service staff communities artists steve aiton ken allen clare bailey alison dimer james gentle catherine howard francis italiano peter keelan ruth koedyk martin meader phillipa obrien evelyn roth suri bin saad matt scurfield nalda searles leticia shaw rodney stratton poppy van ord granger cecile williams volunteers chong chui han ruth monck lorraine sholson katherine stokes geoffrey stokes rebecca stokes ada stokes millyanna stokes tom volkman anna wills khiang wai students rural clinical schools university western australia university notre dame university tasmania delivery partners rural clinical school wa university western australia university notre dame bega garnbirringu health services corporation goldfields midwest medicare local west australian country health service funding corporate partner bhp billiton nicklewest government partners australian government department health aging australia council arts western australian department culture arts healthway health promotion foundation royalties regions lotterywest philanthropic partners jt reid foundation southern cross goldfields ltd cape2cape motorcyclists jan payne carol bower deborah lehmann telethon kids institute shantidani minz christian medical college vellore support expert advice campbell murdoch phil reid vision support