PLoS ONE (Jan 2023)

Patients' and carers' priorities for cancer research in Aotearoa/New Zealand.

  • Millie de Vries,
  • Tiria Stewart,
  • Theona Ireton,
  • Karen Keelan,
  • Jennifer Jordan,
  • Bridget A Robinson,
  • Gabi U Dachs

DOI
https://doi.org/10.1371/journal.pone.0290321
Journal volume & issue
Vol. 18, no. 8
p. e0290321

Abstract

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BackgroundDiscrepancies have been reported between what is being researched, and what patients/families deem important to be investigated. Our aim was to understand research priorities for those who live with cancer in Aotearoa/New Zealand, with emphasis on Māori.MethodsAdult outpatients with cancer and their whānau/family completed a survey (demographics, selecting keywords, free-text comments) at Christchurch hospital. Quantitative and qualitative data were evaluated using standard statistical and thematic analyses, respectively.ResultsWe recruited 205 participants, including both tūroro/patients (n = 129) and their whānau/family/carer (n = 76). Partnership with Māori health workers enabled greater recruitment of Māori participants (19%), compared to the proportion of Māori in Canterbury (9%). Cancer research was seen as a priority by 96% of participants. Priorities were similar between Māori and non-Māori participants, with the keywords 'Cancer screening', 'Quality of Life' and 'Development of new drugs' chosen most often. Free-text analysis identified three themes; 'Genetics and Prevention', 'Early Detection and Treatment', and 'Service Delivery', with some differences by ethnicity.ConclusionsCancer research is a high priority for those living with cancer. In addition, participants want researchers to listen to their immediate and practical needs. These findings may inform future cancer research in Aotearoa.Māori terms and translationAotearoa (New Zealand) he aha ō whakaaro (what are your thoughts) hui (gathering) mate pukupuku (cancer) mokopuna (descendent) Ōtautahi (Christchurch) rongoā (traditional healing) tāne (male) te reo (Māori language) Te Whatu Ora (weaving of wellness, Health New Zealand) tikanga (methods, customary practices) tūroro (patients) (alternative terms used: whānau affected by cancer or tangata whaiora (person seeking health)) wahine (female) Waitaha (Canterbury) whakapapa (genealogy) whānau ((extended) family, based on whakapapa, here also carer).