Māori health literacy and communication in palliative care: Kaumātua-led models

1. Rauawaawa Kaumātua Charitable Trust Research Team 18 July 2012 Māori health literacy and communication in palliative care: Kaumātua-led models

2. 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. 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. “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. to develop appropriate communication models that will enhance the palliative pathway for Kaumātua, whānau, clinicians and community health workers Research Vision

6. Establish advisory group Review of international and New Zealand literature on health literacy in palliative care, with a focus on indigenous peoples Brochure analysis of promotional and informational material on palliative care services Audit EDs, Waikato DHB hospitals Research with kaumātua, whānau Māori, and palliative care workforce Develop communication model/s Report and disseminate Research Design

7. 1. Kaupapa: Kaumātua-led Participatory Research Advisory Group Process Began with Rauawaawa kawa and tikanga Kaumātua 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 • Collaboration • Trust in the process

8. 2: Literature Review Methods 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”

9. Literature Review Methods Identification Articles identified in database (n=571) Articles identified from other sources (n=5) Number of records excluded (n=485) Screening Total articles identified (n=576) Excluded, not palliative (n=23) Eligibility Full-text articles reviewed (n=91) Excluded, not indigenous (n=9) Included Full-text articles for qualitative review (n=59)

10. Literature Review Findings  = development in HL area needed X = development not needed

11. 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. 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. 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. 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. Hui held at Rauawaawa Karakia Waiata Whakawhanaungatanga Briefing on ethics, consent forms; patai Interview with two researchers; at least one Māori researcher Koha Whakawhitiwhitiwhakaaro Kai Interview Process

16. 6. Communication Models

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

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

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

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

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

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

23. Te Totara

24. Te Totara Karakia • (d) Maintenance, Protection • Whānau • Palliative Care Kaimahi • (d) Kiri • Exposed, unprotected • Mauiui • Tohunga (c) Tīwai (c) Tūroro (b) Shelter, food, sustenance; medicinal and cultural care (b) Harakeke, rongoā, pikopiko (a) Kawa, Tikanga; Manaakitanga, Aroha, Wairua (a) Pakiaka

25. Te Totara • (e) Health literacy • Cultural • Functional • Interactive • Technical • Political (e) Kaupekapeka Karakia • (d) Kiri • Exposed, unprotected • Mauiui • Tohunga • (d) Maintenance, Protection • Whānau • Palliative Care Kaimahi (c) Tīwai (c) Tūroro (b) Shelter, food, sustenance; medicinal and cultural care (b) Harakeke, rongoā, pikopiko (a) Kawa, Tikanga; Manaakitanga, Aroha, Wairua (a) Pakiaka

26. Tūpuna Mātauranga (g) Kaitiaki (g) Manu (f) Mokopuna Te Totara (f) Kākano • (e) Health literacy • Cultural • Functional • Interactive • Technical • Political (e) Kaupekapeka Karakia • (d) Kiri • Exposed, unprotected • Mauiui • Tohunga • (d) Maintenance, Protection • Whānau • Palliative Care Kaimahi (c) Tīwai (c) Tūroro (b) Shelter, food, sustenance; medicinal and cultural care (b) Harakeke, rongoā, pikopiko (a) Kawa, Tikanga; Manaakitanga, Aroha, Wairua (a) Pakiaka

27. Whānau and Kaumātua Interactive Health Literacy Low 1. Whānau and Kaumātua Disengagement and withdrawal 3. Whānau and Kaumātua Acceptance Palliative Care Worker Cultural Health Literacy Palliative Care Worker Cultural Health Literacy Low High 4. Whānau and Kaumātua Collaboration 2. Whānau and Kaumātua Struggle High Whānau and Kaumātua Interactive Health Literacy

28. Whānau and Kaumātua Interactive Health Literacy Low 1a.Whānau and Kaumātua Advocacy 3a. Whānau and Kaumātua Monitoring 1b. Worker Education and Cultural Supervision Palliative Care Worker Cultural Health Literacy Palliative Care Worker Cultural Health Literacy 3b. Worker Cultural Supervision Low High 4a. Whānau and Kaumātua Monitoring 2a. Whānau and Kaumātua Advocacy 2b. Worker Education and Cultural Supervision 4b. Worker Cultural Supervision High Whānau and Kaumātua Interactive Health Literacy

29. 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. Mrs Rangimahora Reddy CEO Rauawaawa Kaumatua Charitable Trust 50 Colombo St Frankton, Hamilton 3204 Rangimahora@rauaawaawa.co.nz Contact: Principle Investigator