1. A joint initiative to promote health outcomes for Māori funded by the Health Research Council of New Zealand and the Ministry of Health. Ref: 11/744-Reddy-JVC210-Literacy ‘United for mutual prosperity’ Māori health literacy and communication in palliative care: Kaumātua-led models Rauawaawa Kaumātua Charitable Trust Research Team 18 July 2012

2. A joint initiative to promote health outcomes for Māori funded by the Health Research Council of New Zealand and the Ministry of Health. REF: 11/744-Reddy-JVC210-Literacy He Korowai Hei Tauawhi I Ngā Kaumātua “A korowai of services that will wrap around kaumātua to keep them warm and safe” Hei Manaaki Ngā Kaumātua

3. A joint initiative to promote health outcomes for Māori funded by the Health Research Council of New Zealand and the Ministry of Health. REF: 11/744-Reddy-JVC210-Literacy Rangimahora Reddy, Tiwai Iti (Rauawaawa), Professor Linda Tuhiwai Smith, Professor John Oetzel, Dr Mary Simpson, Dr Maui Hudson (University of Waikato), Mrs Mere Balzer, Matua Beau Haereroa Ms Keri Thompson, Ms Rachel McClintock, Ms Arianna Waller (Te Runanga o Kirikiriroa), Dr Peter Kirk, Mrs Kay Berryman, Mr Rawiri Blundell, Mr Wayne Johnstone, Ms Sandi Haggar (Waikato District Health Board), Professor Ross Lawrenson, Mr James Waetford, Ms Veronique Gibbons (University of Auckland – Waikato Clinical School). Research Team

4. A joint initiative to promote health outcomes for Māori funded by the Health Research Council of New Zealand and the Ministry of Health. REF: 11/744-Reddy-JVC210-Literacy “Māori health literacy and communication in palliative care: Kaumātua-led models” Māori health literacy Functional; Technical; Interactive; Cultural; Critical Communication Palliative care Kaumātua-led Models 1: The Research

5. A joint initiative to promote health outcomes for Māori funded by the Health Research Council of New Zealand and the Ministry of Health. REF: 11/744-Reddy-JVC210-Literacy to develop appropriate communication models that will enhance the palliative pathway for Kaumātua, whānau, clinicians and community health workers Research Vision

6. A joint initiative to promote health outcomes for Māori funded by the Health Research Council of New Zealand and the Ministry of Health. REF: 11/744-Reddy-JVC210-Literacy 1.Establish advisory group 2.Review of international and New Zealand literature on health literacy in palliative care, with a focus on indigenous peoples 3.Brochure analysis of promotional and informational material on palliative care services 4.Audit EDs, Waikato DHB hospitals 5.Research with kaumātua, whānau Māori, and palliative care workforce 6.Develop communication model/s 7.Report and disseminate Research Design

7. A joint initiative to promote health outcomes for Māori funded by the Health Research Council of New Zealand and the Ministry of Health. REF: 11/744-Reddy-JVC210-Literacy 1. Kaupapa: Kaumātua-led Participatory Research Process Began with Rauawaawa kawa and tikanga Kaum ā tua instrumental in the research team developing its own kawa and tikanga Kaumātua-led Rauawaawa Trustees are the advisory group Kaumātua involved in every step Participation Advisory Group Collaboration Trust in the process

8. A joint initiative to promote health outcomes for Māori funded by the Health Research Council of New Zealand and the Ministry of Health. REF: 11/744-Reddy-JVC210-Literacy Used preferred reporting items of systematic reviews and meta-analysis (PRISMA) Search terms (a) “palliative care,” “end-of-life care,” “chronic care,” “palliative health services;” (b) “indigenous,” “Aboriginal,” “Māori,” “First Nations,” “American Indian,” and “Native American;” (c) “health literacy” 2: Literature Review Methods

9. A joint initiative to promote health outcomes for Māori funded by the Health Research Council of New Zealand and the Ministry of Health. REF: 11/744-Reddy-JVC210-Literacy Literature Review Methods Articles identified in database (n=571) Total articles identified (n=576) Excluded, not indigenous (n=9) Excluded, not palliative (n=23) Full-text articles reviewed (n=91) Number of records excluded (n=485) Full-text articles for qualitative review (n=59) Articles identified from other sources (n=5) Identification Screening Eligibility Included

10. A joint initiative to promote health outcomes for Māori funded by the Health Research Council of New Zealand and the Ministry of Health. REF: 11/744-Reddy-JVC210-Literacy Literature Review Findings = development in HL area needed X = development not needed

11. A joint initiative to promote health outcomes for Māori funded by the Health Research Council of New Zealand and the Ministry of Health. REF: 11/744-Reddy-JVC210-Literacy Received 135 brochures from 19 palliative care organisations Analysed 99 brochures FINDINGS Readability: More were difficult than easy to read Writing styles varied... Medical terms were used without explanation 3. Brochure Analysis:

12. A joint initiative to promote health outcomes for Māori funded by the Health Research Council of New Zealand and the Ministry of Health. REF: 11/744-Reddy-JVC210-Literacy Aim i) examine attendances by palliative care patients at Waikato EDs. ii) identify the number, illnesses, palliative care needs of people presenting to ED. iii) to examine the outcome of their visits. Population - patients on the Waikato DHB palliative care register between 1st November 2010 and 31st October 2011 in the Waikato DHB catchment zone. - 1185 patients, 197 Māori (17%), 18 Pacific (2%) and 973 “other”/non-Māori were identified. 4. ED Audit

13. A joint initiative to promote health outcomes for Māori funded by the Health Research Council of New Zealand and the Ministry of Health. REF: 11/744-Reddy-JVC210-Literacy - There were proportionately more Māori (17%) on the register than expected (8%). Possibly because of the greater incidence of advanced cancer in Māori compared to non Māori (Hauora). -Presentation to the ED may be indicative of lack of continuity of palliative care services ED Audit

14. A joint initiative to promote health outcomes for Māori funded by the Health Research Council of New Zealand and the Ministry of Health. REF: 11/744-Reddy-JVC210-Literacy Conducted 21 interviews with Kaumātua Conducted 5 focus groups (1 Kaumātua, 4 whanau) – 39 participants, 14 whanau groups Conducted 3 Palliative care worker focus groups (6 Hospital, 8 Hospice and 7 Community) - 21 participants 5. Interviews

15. A joint initiative to promote health outcomes for Māori funded by the Health Research Council of New Zealand and the Ministry of Health. REF: 11/744-Reddy-JVC210-Literacy Hui held at Rauawaawa Karakia Waiata Whakawhanaungatanga Briefing on ethics, consent forms; patai Interview with two researchers; at least one Māori researcher Koha Whakawhitiwhiti whakaaro Kai Interview Process

16. A joint initiative to promote health outcomes for Māori funded by the Health Research Council of New Zealand and the Ministry of Health. REF: 11/744-Reddy-JVC210-Literacy 6. Communication Models

17. Kaumātua Kaimahi Rōpū Whakahaere Whānau 1. Kaumātua/Whānau Cultural practices Balance needs and responsibilities Receive/provide support Communication Relationships

18. Kaumātua Kaimahi Rōpū Whakahaere Whānau 1. Kaumātua/Whānau Cultural practices Balance needs and responsibilities Receive/provide support 2. Kaumātua/ Kaimahi Give and take Kaumātua: assert wishes and teach culture Kaimahi: respect dignity and position; respect and engage culture; effective communication Communication Relationships

19. Kaumātua Kaimahi Rōpū Whakahaere Whānau 1. Kaumātua/Whānau Cultural practices Balance needs and responsibilities Receive/provide support 2. Kaumātua/ Kaimahi Give and take Kaumātua: assert wishes and teach culture Kaimahi: respect dignity and position; respect and engage culture; effective communication 3. Kaimahi/Rōpū whakahaere Effective co- ordination of services Effective co- ordination of care with other kaimahi Communication Relationships

20. Kaumātua Kaimahi Rōpū Whakahaere Whānau 1. Kaumātua/Whānau Cultural practices Balance needs and responsibilities Receive/provide support 4. Kaumātua/Whānau/ Kaimahi Whānau having a spokesperson to facilitate decision- making Effective communication: building relationships, listening, addressing health literacy needs Collaborative decision- making 2. Kaumātua/ Kaimahi Give and take Kaumātua: assert wishes and teach culture Kaimahi: respect dignity and position; respect and engage culture; effective communication 3. Kaimahi/Rōpū whakahaere Effective co- ordination of services Effective co- ordination of care with other kaimahi Communication Relationships

21. Kaumātua Kaimahi Rōpū Whakahaere Whānau 1. Kaumātua/Whānau Cultural practices Balance needs and responsibilities Receive/provide support 4. Kaumātua/Whānau/ Kaimahi Whānau having a spokesperson to facilitate decision- making Effective communication: building relationships, listening, addressing health literacy needs Collaborative decision- making 5. All Parties Working together to develop health literacy of kaumātua and whānau, as well as kaimahi and rōpū whakahaere 2. Kaumātua/ Kaimahi Give and take Kaumātua: assert wishes and teach culture Kaimahi: respect dignity and position; respect and engage culture; effective communication 3. Kaimahi/Rōpū whakahaere Effective co- ordination of services Effective co- ordination of care with other kaimahi Communication Relationships

22. Kaumātua Kaimahi Rōpū Whakahaere Whānau 1. Kaumātua/Whānau Cultural practices Balance needs and responsibilities Receive/provide support 4. Kaumātua/Whānau/ Kaimahi Whānau having a spokesperson to facilitate decision- making Effective communication: building relationships, listening, addressing health literacy needs Collaborative decision- making 5. All Parties Working together to develop health literacy of kaumātua and whānau, as well as kaimahi and rōpū whakahaere 2. Kaumātua/ Kaimahi Give and take Kaumātua: assert wishes and teach culture Kaimahi: respect dignity and position; respect and engage culture; effective communication 3. Kaimahi/Rōpū whakahaere Effective co- ordination of services Effective co- ordination of care with other kaimahi (6) (8) (7) Communication Relationships

23. Te Totara

24. A joint initiative to promote health outcomes for Māori funded by the Health Research Council of New Zealand and the Ministry of Health. REF: 11/744-Reddy-JVC210-Literacy ( a) Kawa, Tikanga; Manaakitanga, Aroha, Wairua (a) Pakiaka (b) Harakeke, rongoā, pikopiko (b) Shelter, food, sustenance; medicinal and cultural care ( c) Tūroro ( c) Tīwai ( d) Maintenance, Protection Whānau Palliative Care Kaimahi (d) Kiri Exposed, unprotected Mauiui Tohunga Karakia Te Totara

25. A joint initiative to promote health outcomes for Māori funded by the Health Research Council of New Zealand and the Ministry of Health. REF: 11/744-Reddy-JVC210-Literacy (a) Kawa, Tikanga; Manaakitanga, Aroha, Wairua (a) Pakiaka (b) Harakeke, rongoā, pikopiko (b) Shelter, food, sustenance; medicinal and cultural care (c) Tūroro (c) Tīwai (d) Maintenance, Protection Whānau Palliative Care Kaimahi (d) Kiri Exposed, unprotected Mauiui Tohunga (e) Health literacy Cultural Functional Interactive Technical Political (e) Kaupekapeka Karakia Te Totara

26. A joint initiative to promote health outcomes for Māori funded by the Health Research Council of New Zealand and the Ministry of Health. REF: 11/744-Reddy-JVC210-Literacy Tūpuna (a) Kawa, Tikanga; Manaakitanga, Aroha, Wairua (a) Pakiaka (b) Harakeke, rongoā, pikopiko (b) Shelter, food, sustenance; medicinal and cultural care (c) Tūroro (c) Tīwai (d) Maintenance, Protection Whānau Palliative Care Kaimahi (d) Kiri Exposed, unprotected Mauiui Tohunga (e) Health literacy Cultural Functional Interactive Technical Political (e) Kaupekapeka (f) Kākano (f) Mokopuna (g) Kaitiaki (g) Manu Mātaurang a Karakia Te Totara

27. A joint initiative to promote health outcomes for Māori funded by the Health Research Council of New Zealand and the Ministry of Health. REF: 11/744-Reddy-JVC210-Literacy Palliative Care Worker Cultural Health Literacy Whānau and Kaumātua Interactive Health Literacy Low High LowHigh Whānau and Kaumātua Interactive Health Literacy Palliative Care Worker Cultural Health Literacy 1. Whānau and Kaumātua Disengagement and withdrawal 3. Whānau and Kaumātua Acceptance 4. Whānau and Kaumātua Collaboration 2. Whānau and Kaumātua Struggle

28. A joint initiative to promote health outcomes for Māori funded by the Health Research Council of New Zealand and the Ministry of Health. REF: 11/744-Reddy-JVC210-Literacy Palliative Care Worker Cultural Health Literacy Whānau and Kaumātua Interactive Health Literacy Low High LowHigh Whānau and Kaumātua Interactive Health Literacy Palliative Care Worker Cultural Health Literacy 1a.Whānau and Kaumātua Advocacy 3a. Whānau and Kaumātua Monitoring 1b. Worker Education and Cultural Supervision 4b. Worker Cultural Supervision 3b. Worker Cultural Supervision 2b. Worker Education and Cultural Supervision 2a. Whānau and Kaumātua Advocacy 4a. Whānau and Kaumātua Monitoring

29. A joint initiative to promote health outcomes for Māori funded by the Health Research Council of New Zealand and the Ministry of Health. REF: 11/744-Reddy-JVC210-Literacy 1: Wānanga, Hui, Awheawhe--Rōpū whakahaere should use multiple communication hongere (channels) to engage in two-way communication about palliative care services (to improve health literacy) 2: Kaiārahi Kaumātua, Kaiārahi Whānau (peer- mentors) 3: Training and Cultural Supervision for Palliative Care Kaimahi 4: Improving Quality of Brochures 5: Resourcing Community Health Kaimahi—to provide culturally driven services 7. Recommendations:

30. A joint initiative to promote health outcomes for Māori funded by the Health Research Council of New Zealand and the Ministry of Health. REF: 11/744-Reddy-JVC210-Literacy Mrs Rangimahora Reddy CEO Rauawaawa Kaumatua Charitable Trust 50 Colombo St Frankton, Hamilton 3204 Rangimahora@rauaawaawa.co.nz Contact: Principle Investigator