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Community-based participatory action research on rheumatic heart disease in an Australian Aboriginal homeland: Evaluation of the ‘On track watch’ project

Author

Listed:
  • Haynes, Emma
  • Marawili, Minitja
  • Marika, Brendan Makungun
  • Mitchell, Alice G.
  • Phillips, Jodi
  • Bessarab, Dawn
  • Walker, Roz
  • Cook, Jeff
  • Ralph, Anna P.

Abstract

Strategies to date have been ineffective in reducing high rates of rheumatic heart disease (RHD) in Australian Aboriginal people; a disease caused by streptococcal infections. A remote Aboriginal community initiated a collaboration to work towards elimination of RHD. Based in ‘both-way learning’ (reciprocal knowledge co-creation), the aim of this study was to co-design, implement and evaluate community-based participatory action research (CBPAR) to achieve this vision. Activities related to understanding and addressing RHD social determinants were delivered through an accredited course adapted to meet learner and project needs. Theory-driven evaluation linking CBPAR to empowerment was applied. Data collection comprised focus groups, interviews, observation, and co-development and use of measurement tools such as surveys. Data analysis utilised process indicators from national guidelines for Aboriginal health research, and outcome indicators derived from the Wallerstein framework. Findings include the importance of valuing traditional knowledges and ways of learning such as locally-meaningful metaphors to explore unfamiliar concepts; empowerment through critical thinking and community ownership of knowledge about RHD and research; providing practical guidance in implementing empowering and decolonising principles / theories. Lessons learned are applicable to next stages of the RHD elimination strategy which must include scale-up of community leadership in research agenda-setting and implementation.

Suggested Citation

  • Haynes, Emma & Marawili, Minitja & Marika, Brendan Makungun & Mitchell, Alice G. & Phillips, Jodi & Bessarab, Dawn & Walker, Roz & Cook, Jeff & Ralph, Anna P., 2019. "Community-based participatory action research on rheumatic heart disease in an Australian Aboriginal homeland: Evaluation of the ‘On track watch’ project," Evaluation and Program Planning, Elsevier, vol. 74(C), pages 38-53.
    • Handle: RePEc:eee:epplan:v:74:y:2019:i:c:p:38-53
    DOI: 10.1016/j.evalprogplan.2019.02.010
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    References listed on IDEAS

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    1. Pasqualina M Coffey & Anna P Ralph & Vicki L Krause, 2018. "The role of social determinants of health in the risk and prevention of group A streptococcal infection, acute rheumatic fever and rheumatic heart disease: A systematic review," PLOS Neglected Tropical Diseases, Public Library of Science, vol. 12(6), pages 1-22, June.
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    4. Morton Ninomiya, Melody E. & Pollock, Nathaniel J., 2017. "Reconciling community-based Indigenous research and academic practices: Knowing principles is not always enough," Social Science & Medicine, Elsevier, vol. 172(C), pages 28-36.
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    7. Onnis, Leigh-ann & Klieve, Helen & Tsey, Komla, 2018. "The evidence needed to demonstrate impact: A synthesis of the evidence from a phased social and emotional wellbeing intervention," Evaluation and Program Planning, Elsevier, vol. 70(C), pages 35-43.
    8. Lenore Manderson & Jens Aagaard-Hansen & Pascale Allotey & Margaret Gyapong & Johannes Sommerfeld, 2009. "Social Research on Neglected Diseases of Poverty: Continuing and Emerging Themes," PLOS Neglected Tropical Diseases, Public Library of Science, vol. 3(2), pages 1-6, February.
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    Cited by:

    1. Lavrencic, Louise M. & Donovan, Terrence & Moffatt, Lindy & Keiller, Tamara & Allan, Wendy & Delbaere, Kim & Radford, Kylie, 2021. "Ngarraanga Giinganay (‘thinking peacefully’): Co-design and pilot study of a culturally-grounded mindfulness-based stress reduction program with older First Nations Australians," Evaluation and Program Planning, Elsevier, vol. 87(C).
    2. Kristina Vine & Tessa Benveniste & Shanthi Ramanathan & Jo Longman & Megan Williams & Alison Laycock & Veronica Matthews, 2023. "Culturally Informed Australian Aboriginal and Torres Strait Islander Evaluations: A Scoping Review," IJERPH, MDPI, vol. 20(14), pages 1-16, July.
    3. Emma Haynes & Minitja Marawili & Makungun B. Marika & Alice Mitchell & Roz Walker & Judith M. Katzenellenbogen & Dawn Bessarab, 2022. "Living with Rheumatic Heart Disease at the Intersection of Biomedical and Aboriginal Worldviews," IJERPH, MDPI, vol. 19(8), pages 1-20, April.
    4. Anna P. Ralph & Angela Kelly & Anne-Marie Lee & Valerina L. Mungatopi & Segora R. Babui & Nanda Kaji Budhathoki & Vicki Wade & Jessica L. de Dassel & Rosemary Wyber, 2022. "Evaluation of a Community-Led Program for Primordial and Primary Prevention of Rheumatic Fever in Remote Northern Australia," IJERPH, MDPI, vol. 19(16), pages 1-17, August.
    5. Heath Greville & Emma Haynes & Robin Kagie & Sandra C Thompson, 2019. "‘It Shouldn’t Be This Hard’: Exploring the Challenges of Rural Health Research," IJERPH, MDPI, vol. 16(23), pages 1-12, November.
    6. Teasdale, Rebecca M. & Strasser, Mikayla & Moore, Ceily & Graham, Kara E., 2023. "Evaluative criteria in practice: Findings from an analysis of evaluations published in Evaluation and Program Planning," Evaluation and Program Planning, Elsevier, vol. 97(C).
    7. Haynes, Emma & Walker, Roz & Mitchell, Alice G. & Katzenellenbogen, Judy & D'Antoine, Heather & Bessarab, Dawn, 2021. "Decolonizing Indigenous health: Generating a productive dialogue to eliminate Rheumatic Heart Disease in Australia," Social Science & Medicine, Elsevier, vol. 277(C).
    8. Emma Haynes & Minitja Marawili & Alice Mitchell & Roz Walker & Judith Katzenellenbogen & Dawn Bessarab, 2022. "“Weaving a Mat That We Can All Sit On”: Qualitative Research Approaches for Productive Dialogue in the Intercultural Space," IJERPH, MDPI, vol. 19(6), pages 1-18, March.
    9. Tamara Butler & Alana Gall & Gail Garvey & Khwanruethai Ngampromwongse & Debra Hector & Scott Turnbull & Kerri Lucas & Caroline Nehill & Anna Boltong & Dorothy Keefe & Kate Anderson, 2022. "A Comprehensive Review of Optimal Approaches to Co-Design in Health with First Nations Australians," IJERPH, MDPI, vol. 19(23), pages 1-38, December.
    10. Emma Haynes & Alice Mitchell & Stephanie Enkel & Rosemary Wyber & Dawn Bessarab, 2020. "Voices behind the Statistics: A Systematic Literature Review of the Lived Experience of Rheumatic Heart Disease," IJERPH, MDPI, vol. 17(4), pages 1-25, February.

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