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

Abstract

Background Discrepancies 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. Methods Adult 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. Results We 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. Conclusions Cancer 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 translation Aotearoa (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)