Ep 27 Whānau Manaaki

 Māori know what's right for their own whānau and care for their whānau beautifully. However for some there may be a disconnection from their whakapapa, from their iwi, from their tikanga. This conversation with Diane Perenara, nurse, and Equity and Partnerships Manager at Arohanui Hospice, discusses reconnecting and shares a website that is dedicated to supporting Māori whānau providing care to adults and kaumatua at the end of life while taking care of their whānau.

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Transcript

Episode 27 – Whānau Manaaki

Kia Ora and welcome to The Ending Life Well Podcast. This podcast series for carers focuses on advice and practical solutions for carers who have been thrown into the deep end looking after a loved family member or friend in their last days, weeks, or months of life. 

Our episode today is Whānau Manaaki

Denise 

Hi, I'm Denise van Aalst, a senior palliative care nurse and educator with Otago community hospice. Today I'll be talking with Diane Perenara a nurse, and Equity and Partnerships Manager at Arohanui Hospice. Welcome Diane. Can I ask you to please introduce yourself?

Diane

Kia Ora Denise, Kia Ora Tatou, Ko Taranaki, ko Maungatautari ngā Maunga, ko Waiongana, ko Waikato ngā awa, Ko Aotea, ko Tainui ngā Waka, Ko Puketapu, Ko Ngatī Korokī Kahukura ngā hapū, Ko Te Ati Awa, Ko Waikato ngā iwi, Ko Muru Raupatu, Ko Te Pae Pae o te Raukura, Ko Maungatautari ngā marae, Ko Diane Perenara toku ingoa, he neehi pairui ahau ki Arohanui Hospice. Kia ora I’m Diane Perenara I’ve been here at Arohanui Hospice for about seven years now. I’m a nurse and have recently stepped into a newly established role here as equity and partnership manager, which is an exciting space to be in. So Kia ora tatou.

I might just go into a karakia, if that’s okay Denise.

Denise

That would be lovely. Thank you. 

Diane

Kia hora te marino

Kia whakapapa pounamu te moana

Hei huarahi mā tātou i te rangi nei

Aroha atu aroha mai

Tātou i a tātou katoa

Kia ora 

Denise 

Kia ora. Thank you, Diane, it's a beautiful start to our korero today. Diane, I was really wanting to have a conversation with you about, a little bit about how Māori care for their own which they do so beautifully. But also acknowledging that for many Māori, who are perhaps going to be involved with caring for a family member, some of their connections with their heritage may have been a little bit lost over the years and might be seeking some guidance for that. And I thought this could be a great opportunity to talk through where they can find some of that information.

Diane

Kia ora Denise. Thank you for acknowledging that because it is something we as Māori, you know, before we face, obviously, from the impacts of colonisation, that a lot of Māori are disconnected from their whakapapa, from their areas, from their iwi. And so I think when sometimes a non-Māori might think of Māori, they may think that we, we all know how to speak te reo or we all know our whakapapa, but unfortunately, that's not the case and so that can bring a lot of mamae, a lot of pouri, a lot of sadness to, to Māori, that disconnection. And so yeah, it's important that we as health professionals, even though I know this is aimed at our whānau manaaki or our carers that we as well as health professionals acknowledged that whānau can be disconnected and they may not have the answers. They absolutely know what to do for their whānau, they care for their whānau beautifully. They know what's right for their whānau. And we also know that there's different tikanga so different practices and rules and things that different whānau or different iwi practice, but there is a really amazing website that was created by The Pae Herenga team, which is a research group from Te Ārai Palliative Care and End of Life Research Group up in Auckland, this kaupapa was led by Tess Moeke-Maxwell. And that website is called Te Ipu Aronui. I believe it was launched in 2020. But it's just absolutely amazing for any whānau manaaki. So anyone when I say whānau manaaki   I'm talking about whānau that are looking after their loved ones. So it's ideal and it doesn't just have actually have to be for Māori it can be for anyone that wants some guidance and some information, but I'll tell you a little bit about Te Ipu Aronui. So it's a website that's dedicated to supporting Māori whānau and providing care to adults and kaumatua at the end of life while taking care of their whānau. The aim of this website, Te Ipu Aronui, is to is to assist whānau who may have lost touch with their traditional care customs due to the impacts of colonisation, assimilation, and modern urban lifestyles. 

The website Te Ipu Aronui shares stories or pūrākau, so Māori, you know if we think back years ago, I mean, we still love our pūrākau and our stories now but that’s actually how our knowledge and traditions were shared throughout the generations, through pūrākau, so that is what The Pae Herenga team focused on in this beautiful website- was on pūrākau and storytelling.

So the stories are actually from whānau manaaki, so it's lived experiences, it's whānau that have been really happy to share their journey and their insights and their learnings so that other whānau that are going through the same thing can draw from that, can learn from that, can get ideas from these stories. So there's also pūrākau or stories from rongoā clinicians, from tohunga practitioners and from Māori health professionals as well. And these all people participated in this amazing study which resulted in this beautiful, it’s a absolutely beautiful website. I know you’ve seen it, Denise it's just stunning to look through. 

Denise

It is a beautiful website and what I love about it, it's really engaging, it's really easy to navigate. I found it just invited me in. I wanted to go and look through the different pages, the different steps on it. And as a non-Māori I felt really engaged in this site that I could go in and look and it didn't matter that there was things I didn't know. You know, this was a website that I didn't feel bad for not knowing something but I could go in and learn and pick up some of the skills, some of the knowledge, that would help you know and I love that this is open to anybody.

Diane

There's a lot of really good information and I find it quite easy to navigate. One of, like the tab you know, whānau may look at is there’s a tab that is titled for whānau manaaki or family caregivers and there's a drop-down box and then there's you know, all these different aspects so again the pūrākau so there's the area with all the video stories which are actually just beautiful and touching. 

And also there is information about wairuatanga, which we as Māori hold very close to us you know, our spiritual connection and there's also information about Rongoā. So some Māori you know, they will be very connected and will have their own connections and and own tikanga and things but this is still helpful for for Māori wherever they are in their te ao Māori, whether they have got strong connections with their iwi, whether they don't, this will be helpful for everyone who is supporting their loved one at end of life. And even goes through to you know, bereavement and tangihanga, kawe mate which is something we as Māori do a year after our loved one has has passed. So yes, it's beautiful. 

Denise 

And there is all that guidance and even, there are some karakia there so that, if people think that this is something they’d like to do, they'd like to have a karakia, but I don't know what to say well there's some guides there for that as well. So this is a really simple site that has all of the information beautifully presented. 

Diane

It is stunning.

Denise

 So this site Diane isn't quite so much about how to give someone a bed bath. But this is about the total care. It really adopts Te Whare Tapa Whā. There's information there about the rongoā,  there's information about wairua, there is the karakia as we mentioned, this is the wraparound care of somebody and you can pick up and adopt as much or as little of it as is appropriate for you and your whānau.

Diane

Yes that's absolutely right Denise, te ipu aronui encompasses Te Whare Tapa Whā. There's quite a strong focus on wairuatanga and in te ao Māori wairuatanga is really important. And more so at the end of life, and, you know, has the aspect of tapu as well. But for some, some Māori  they are disconnected from their Māoritanga, or from their iwi, or from their hapu. You know, this website would be really helpful for them, in seeking guidance in how to engage and connect with wairuatanga. We know for all Māori and all people, they have that innate spiritual side, we all do. This website would be really helpful if they're wanting to learn some karakia that might be helpful for them to whakawātea or to, to do karakia for their loved one. So there's a tab on spirituality and wairua, karakia definition, talking about different faiths, but also spiritual safety and protection. So there's some really good support in wairuatanga for whānau Manaaki on this website. 

Denise 

And it is an easy to navigate website, which means that you can access from your phone or any device. So Diane, you know, not everybody's got great internet access. One of the other options for this would be, you know, perhaps going into the local library, and using Internet access there to be able to have a look at this website, and maybe even print off some of the information from the pages that they wanted to be able to take home and access at home, wouldn’t it? 

Diane

I think that sounds like a really good idea, yeah.

Denise 

Diane, there's another website. So Hospice New Zealand have recently released an amazing new guide for carers, and this is brand new, it's just come out in the middle of 2024. This guide for carers has been really written and supported by the Māori community as well, isn't it? So there was a lot of information in this booklet. And if people were wanting that information, they can go to the Hospice New Zealand website, or they could go to their local hospice home who, in the near future, will be able to have printed copies of that available for people to look at.

Diane

Yeah, it's a great resource. Denise, I've had a, had a good look through and what I do love about this new updated version is there is a lot more information around caring for Māori at end of life. So it's fantastic actually. The updated version certainly encompasses a lot more te ao Māori within it. So it's a really good resource I believe for whānau manaaki. Even within this booklet, you know, there's a karakia in here, but also it talks about the importance of tikanga and kawa. It also makes some suggestions of ways that you can help uphold the mana of the person that you're caring for.

Denise 

And that is so important for all isn't it? Upholding the mana of the person we're caring for. Because really, that's what we all want to do. When we're caring for somebody we know, we love, it's so important to us and to them that we continue to support them and uphold their mana. It's maintaining their dignity. It's celebrating who they are, their personhood, their wairuatanga, them. 

Diane, so we've mentioned a couple of websites that people can go to for some guidance, for some information. Where else could people be seeking this kind of support and information? Is there a safe place in their own community that they might be able to seek this?

Diane

I think all hapori, all communities have the answers and know how to look their communities. But we also know that a lot of whānau are not living in their  tūrangawaewae or where they whakapapa to. So for instance, I whakapapa to Waikato and Taranaki, however I live in Te Papaioea or Palmerston North. And so some whānau might find it hard to make a connection, maybe with the iwi in the area that they live in, because they may feel that, you know, that's not their iwi. However, most places will have kaupapa Māori or iwi providers. So my suggestion is if, you are wanting some support, I would reach out to the kaupapa Māori providers in your area. So for instance, here in Te Papaioea, here in the Manawatū, we have several kaupapa Māori or iwi providers who provide all sorts of supports for, not just Māori, for all, but with a focus you know, with the te ao Māori lens. And one service that we do have here in the Manawatū is our Māori cancer coordinators, who are like a liaison role and work alongside whānau and then come and connect with us and and provide a support between. So there are a lot of you know, even Whānau Ora Navigators, our kaiwhakaaraara, they are another really good support so your first connection doesn't have to necessarily be with hospice, or with your GP. If you're wanting to make a connection with other Māori for support I'd be looking to the hapori, to the community. If not the iwi providers or the kaupapa Māori services.

Denise 

So Diane, many hospices now have people in roles, such as Kaimanaaki roles who are really keen to support Māori members of the community. So if somebody has been told that they are likely to have less than 12 months to live, if they are seeking some extra support, hospices may well also be able to give them some of that support. It doesn't mean they're going to rush in and take over does it? But it means that they may well be able to help them connect with their own roots and understand what might be needed for them.

Diane 

That's correct Denise. There’s certainly, I mean, I've been with, Arohanui Hospice for about seven years, and I have seen over the years, with other hospices around Aotearoa, the growing numbers of Māori kaimahi in these spaces. So like I said, Kaiāwhina, Kaimanaaki kaitakawaenga and those are really, really important roles. And, you know, they've got different names, they do different things, but ultimately a main part of their role is to support whānau Māori, to liaise with whānau Māori through the hospice, because we know that Māori traditionally haven't accessed palliative care services. And there may be some barriers in engaging with hospice and we don't know what we don't know. And a lot of people actually really don't know, not just Māori, but a lot of people don't really know, what palliative care is and what hospices are, so you know, the Māori liaison role or the kaimahi, or the, like I said, Kaiāwhina, kaitakawaenga, a huge part of their role is to support that whānau Māori through their palliative journey. And that can be in all sorts of different aspects with the whānau being the lead but encompassing Te Whare Tapa Whā and making sure you know that tinana, they are well, wairuatanga, all those aspects of Te Whare Tapa Whā, that house, that whare is standing evenly.

Denise 

Diane, I've got to admit, and I had heard of Te Whare Tapa Whā but it wasn't till I got involved with hospice back in the1990s that I really understood what Te Whare Tapa Whā was.  And of course Hospice NZ, it underpins all hospice care in New Zealand. And I just love the way it is those four walls, it celebrates really the individual, and what are their needs, how are their four walls constructed. And therefore, what can I do to support each of those walls for a person I'm caring for, and whether that's as a health professional or as a family member, because I've cared for my family as well. And using that framework just helps me understand this person, and what they need from me as an individual, not me, saying you're this therefore you need that. I'm able to meet that person as an individual and understand their needs. And it's a beautiful framework.

Diane

It is a beautiful framework, and  we're very blessed here at Arohanui Hospice to have Tā Mason Durie as our patron and actually he delivers our Te Tiriti training. So we're very blessed to have him with us.

Denise

 Diane, thank you for this today. I hope that some of what we've discussed will be of help to people who are wanting to care for any of their family, but in particular for their Māori whānau, who are wanting to have some extra help and support there. So we've had some suggestions and of course, people can reach out to these websites, to their local hospice for something further if they would like. We will mention the websites again when we wrap up at the end. But Diane, thank you for your time today.

Diane

Kia Ora Denise, thank you for giving me the opportunity to have a korero with you today. I think it's so important that we support our hapori, our whānau in the community to know everything they can know so that they can provide the best care that they can for their whānau so thank you for this opportunity today. Kia ora. So I will just close this with a karakia.

Whakamaua te aroha ki a Rangi e tū iho nei

Whakamaua te aroha ki a Papa e takoto ake nei

Whakamaua te aroha, ki a rongo, ki a Tane

Whakamaua kia tina

Tina. Hui e. Tāiki e.

Denise 

Thank you Diane. And thank you listeners for joining us today. This podcast was brought to you by our Otago Community Hospice, with support from Hospice New Zealand. The website we've mentioned today is teipuaronui.co.nz and hospice.org.nz. 

If you found this discussion helpful. Check out our other episodes of Ending Life Well, a podcast series for carers. You can also find more resources for caring for a person who's dying at otagohospice.co.nz/education