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

1. Rauawaawa Kaumātua Charitable Trust Research Team 8 November 2013 • National Kaumātua Service Providers Conference 2013 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. Research

4. Vision . . .to develop appropriate communication models that will enhance the palliative pathway for Kaumātua, whānau, cliniciansand community health workers Research and Vision • “Māori health literacy and communication in palliative care: Kaumātua-led models”

5. Health Literacy

6. 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

7. 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 Interviews

8. Findings

9. 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 Challenges/tensions 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/Rōpū whakahaere • 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

10. Box 1: Kaumātua/Whānau Navigating the End-of-Life Journey

11. Autonomy and connection (Tino rangatiratanga and tino whānaungatanga) You wouldn’t want them [whānau] to come in run in every half an hour to see if you’re alright. Once you know, they put me in a home that is really nice and go on with their life….The good part is to see the smile on the whānau face to know that there is somebody around round them all the time you know. (kuia) Kaumātua/Whānau : Challenges and Tensions

12. Kaumātua/Whānau : Challenges and Tensions Conflict and connection We get built up with all sorts of things and so we start lashing out at each other and that happened to our family. It wasn’t good. (kuia)

13. Kaumātua/Whānau : Managing Challenges and Tensions Isolation and connection He was diagnosed with having cancer in the stomach lining, and for about three months all I did was cry. What am I gonna do? Where am I gonna go to? Because I was in a Pākehā environment; there’s no help for, for me anywhere. (kuia)

14. Kaumātua/Whānau : Managing Challenges and Tensions Balancing needs for self and other My first experience was when my mother in-law had cancer stomach cancer and I looked after her at home. And one of the things she didn’t want to do was die in my home because she felt it might have frightened my children. (kuia) The place became invaded with visitors because she was so involved with Māori women’s welfare league and …people kept coming. My whole time was to keep the house turning over and seeing to her needs. (kuia)

15. Kaumātua/Whānau : Managing Challenges and Tensions Inclusion in decision-making conversations (autonomy/connection; balancing needs) Coordination conversations (avoiding conflict and balancing needs) “We had a roster that had about fifteen of us that included the brothers and sisters, our children, and some of our in-laws. So we had a roster and every time a new person came on, that book was there for that person to read-up on.” (whānau member)

16. Kaumātua/Whānau : Managing Challenges and Tensions Emotional support within the whānau (connection; balancing needs) Passing on lessons to the next generation. (connection, autonomy) “But maybe next time, we need to be a bit smarter and not just help for the care of our Dad but help for the care of ourselves. [If] we don’t care about ourselves, then we’re not gonna give the care to our Dad.” (whānaumember)

17. Box 2, 3, & 4: Ideal Kaimahi Communication

18. Ideal Kaimahi Communication

19. Tikanga Kaumātua tended to think in terms of avoiding negative I think the palliative nurses need training on how to deal with our people because they are not user-friendly. I don’t care what anybody says; some are but a lot of those aren’t. And they need education with how to work with Māori people when they are sick. (kuia) Kaimahi in terms of wanting to learn more I think we provide a very good service to Māori but I do think that there is room for improvement. I think people need to be comfortable with us and I’m not sure that always happens. (kaimahi)

20. Information Kaumātua/whānau want clear and honest information [His nurse] we always pushed her for answers and she was free to give them…She was very sensitive to our needs. (whānau member) Kaimahi see it as their responsibility to provide non-technical information and “correct” image of palliative care. There is a problem with kaumātua who have a problem with the terminology that is out there that they don’t understand. And, if they don’t understand, they shut down. (community kaimahi)

21. Respect Rights/Wishes All believe that the wishes of kaumātua/whānau need to be respected and they need to make decisions It’s also about letting them take the lead and quite often, they don’t know how to take the lead…So it’s important for us to actually establish first where they are by asking questions….They like you to be professional, but also down to earth and not going in there and just taking the lead and telling them how it is and what we are about. Just letting them remain in charge, that’s important. (Hospice kaimahi)

22. Whakawhānaungatanga (Relationship Building) Kaumātua want a caring relationship ‘They (kaimahi) were really great and her friends were great everyone was. You know, it was a, a sad time but everything went smoothly which does help.” Whānau want to be a communication bridge We whānau had to understand it first. We can even talk to them you know. We had to get a gist of what they were saying. Well we can relate that back to Mum and Dad. Kaimahi saw the importance of building relationship as well

23. Advocacy Whānau want kaimahi to advocate on their behalf She [nurse] has got direct links and she’s wonderful . . . she doesn’t give up she is like a pit-bull. ‘I’m going to talk to somebody about this and they’re going to give me an answer.’ She becomes the advocate she’s like between the whānau and hospital those tertiary services and it’s wonderful.” Community kaimahi saw their role as advocate; Other kaimahi saw their role as improving coordination of services

24. Improving Health Literacy

25. What each of us can do

26. What kaumātua and whānau can do Kaumātua • Before • Palliative Care is needed • Build relations with providers • Plan & prepare • Learn from friends • Mentor others • During • Palliative Care • Seek kaitautoko • Ask for help • Assert your wishes • Teach kaimahi Whānau Kaimahi Rōpū Whakahaere

27. . . . during palliative care (1) Seek kaitautoko; ask for help; ask questions So, sometimes it’s our fault for not asking for help because we’re too proud like the immediate whānau. We think we can do it all ourselves. And so we go away and we do all these things ourselves then next minute we’re like pulling our hair out because we’re stressed and we don’t have enough time to go and spend with our own families. We can’t go out we can’t do this because we’ve taken on that whole work load ourselves. . . . we need to tap into and say to ourselves, ‘Yes, we can’t do it ourselves. We need to get that help.’

28. . . . during palliative care (2) Assert wishes “Mainthing is to get that help. People don’t be afraid to ask for that help and get it and get it because you need it.” “I’d like our people to maybe, be less critical of the others and try to open up the heart and say we need your help.”

29. . . . during palliative care (3) Teach kaimahi “Mainthing is to get that help. People don’t be afraid to ask for that help and get it and get it because you need it.” “I’d like our people to maybe, be less critical of the others and try to open up the heart and say we need your help.”

30. What kaimahi can do Kaumātua • As Part of work role • Develop own cultural literacy • Build relationships with Kaumātua service providers • During • Palliative Care • Use existing relationships • Improve care co-ordination • Listen and talk “with heart” Whānau Kaimahi Rōpū Whakahaere

31. . . . during palliative care (4) Use relationships to engage with culture “I think we are extremely lucky because we have got our own kaumātua who we can call on day and night and he will visit with any of the staff that are having problems. He will go to the unit; he talks to all our volunteers, and he is just a very special person.”

32. . . . during palliative care (5) Improve care coordination (a) “The way we work is that we work with other agencies, like the Hospice and the district nurses and the general practitioners and anybody else that might well be involved. It’s a team effort really.”

33. . . . during palliative care (6) Improve care coordination (b) “One [issue] that sticks out is being taken seriously; being perceived as a professional. And I’ve worked amongst, in a so-called team of professionals, clinical professionals. But because I wasn’t qualified in a clinical context there was no way that I could be a part of both my staffing team let alone be accepted as I interfaced with different services. I just simply felt I just wasn’t taken seriously enough. Just ‘so-and-so’ helping out ‘Aunty what’s-her-name today’. That’s the feeling that I got. And I experienced that for two years so I don’t believe that was perceived, that was quite real.”

34. . . . during palliative care (7) Listen and talk “with heart” Ask what Kaumātua and their whānau want Give emotional and physical support Give clear information without technical or medical ‘jargon’ Make sure Kaumātua and their whānau know their entitlements

35. Close

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