Pānui - Te Kete Rongomau

Nau mai, welcome to our second pānui to update you all on Te Kete Rongomau. Today, we celebrate the end of the research project's first year. We describe the project's progress over the first year, share the recordings from our inaugural community symposium, and present some of what we found through our community hui.

Please feel free to share our website with people you think may be interested. We have a ‘follow us’ section at the end of this pānui, where you can sign up to receive updates, news, and invitations to our events.

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Our first year

Wow! Our first year was really busy, as we spent much time with the Lakes and Waikato communities to find out what was most important to them regarding Mental Health Advance Preference Statements (MAPS). We had planned to have up to 20 meetings (hui) with a maximum of 60 participants, including tāngata whaiora, whānau, family and 60 kaimahi. But we ended up holding 16 hui with a total of 125 people attending. We have analysed the information we gathered from these meetings (see below) and are preparing the MAPS implementation resources based on that information.

During the first year, we also achieved other objectives, including setting up project infrastructure and governance committee, developing this website, holding community and research meetings, and sharing insights at wider conferences and gatherings.

The wider research rōpū/team at The University of Waikato. Left to right: Wi Te Tau Huata, David Austin, Katey Thom, Areta Ranginui Charlton, Suzette Poole, Rachel Tester, Sarah Gordon, Anthony O'Brien, Jessie Lenagh-Glue, Ty McWilliams, Constance Jefferson, Maryanne Richardson, Kiri Prentice, Debbie Goodwin, Johnnie Potiki, Wheeti Maipi, Kris Gledhill.

In the second year, our main focus will be to prepare to implement the various MAPS that will become part of Te Kete Rongomau across the Lakes and Waikato areas.

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Community symposium

On February 9th, we held the inaugural community symposium for Te Kete Rongomau, which we will host annually over the project's three years. The community symposium aims to share insights into the project and invite people to speak on the wider contexts in which this project is situated. Below, you can watch three recordings that made up our first symposium.

PART 1

Introduction to the symposium from Johnnie Potiki and Sarah Gordon, followed by the Naming and gifting of Te Kete Rongomau, by Hori Kingi and Wi Te Tau Huata

PART 2

The Mental Health Act and Me, Giles Newton-Howe

PART 3

Mental Health Advance Preference Statements (MAPS) and Pou Herenga in the Southern Region by Johnnie Potiki, followed by the closing of the symposium from Sarah Gordon and Johnnie Potiki

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Listening and learning from Waikato and Lakes communities

Over the project's first year, we aimed to consult with communities to inform the creation MAPS resources. This period of consultation comprises phase 1 of our project, which will result in the creation of localised tools and resources to help tāngata whaiora and whānau create their MAPS.

The following section presents the results of the hui, covering themes organized around four core questions. You can click the arrows to read more about each thematic area.

1.      What would you like to see MAPS include? 

All participants across hui shared many ideas on preferences that could be included in MAPS. However, tāngata whaiora were more specific about the content of these themes.

Common themes we heard from kaimahi and tāngata whaiora included treatment preferences, who to contact, personal details/affairs, A LIVING document, and whānau support.

• Treatment preferences, e.g. what I want/do not want? A strong theme across hui was the inclusion of treatment preferences in MAPS, which focused on what helps or does not help tāngata whaiora. Preferences were to be considered holistically and inclusive of cultural preferences, such as rongoā.

• Who should be informed/involved? Whānau almost unanimously identified who should be informed/involved in care.

• Personal details/affairs. Personal affairs covered preferences for attendance to employment, children, and pets in MAPS. Housing was identified as particularly important because of its connection with other life domains (food, shelter, safe spaces, and family).

• A LIVING document. Many kaimahi and tāngata whaiora saw it as important that MAPS be considered a living document subject to review and regular updates.

• Where whānau can access support when whaiora are unwell. Interestingly, participants from all hui wanted inclusion of where whānau can access support when tāngata whaiora are unwell.
  

Additional themes of personal effects, communication preferences, being able to share whakapapa, and inclusivity of Te Ao Māori came specifically from tāngata whaiora.

• Personal effects. Tāngata whaiora wished to specify items that could be brought from home for comfort and connection. 

• Communication preferences and respect. This theme strongly focused on respect, including being able to specify what respect means for tāngata whaiora. Further, it included communication needs (e.g. should a person experience a learning disability, emotional dysregulation, triggers, and/or generally find verbalising difficult). Tāngata whaiora identified it would be valuable to stipulate ‘questions I want to ask’ and ‘questions for staff to ask me’. Finally, tāngata whaiora wanted to be able to identify interactions that are typically met with distress (e.g. communication that might be triggering).

• Being able to share whakapapa/ko wai au and information about what we are like when well/unwell. All tāngata whaiora thought conveying information about themselves was important—being able to share their whakapapa/Ko wai au. Information about what they are like when well/unwell was felt to be important in assisting people in engaging with them to understand them better.

• Tāngata whaiora Māori also added that MAPS should be inclusive of Western and/or Māori models of health and Te Reo.

Tāngata whaiora and kaimahi Māori talked about MAPS needing to incorporate Te Ao Māori. 

• Tāngata whaiora and kaimahi Māori talked about MAPS needing to incorporate Te Ao Māori. Both tāngata whaiora and kaimahi Māori thought the incorporation of Te Ao Māori such as whakapapa, whakataukī, and karakia would be important.

• Kaimahi Māori added the need for a specific Māori tool. In addition to the references to cultural factors and healing practices (e.g.rongoā) already mentioned, kaimahi Māori specified the importance of a specific Māori tool based on Māori models of health. This tool might reflect local iwi knowledge and history (e.g., Waikato Tainui) and be presented using Māori visuals, whakataukī, and art (e.g., he piko he taniwha, awa visual).

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2.     How would MAPS work in practice?

When discussing the utility of MAPS, it was interesting that none of the groups suggested a need for a capacity assessment to ‘validate’ the MAPS. In fact, Māori kaimahi specified assumptions should not be made about tāngata whaiora competence to complete MAPS.

The common themes from all included timing, accessibility, person-led, staff workload, system integration, and support if needed.

• Timing—e.g. When is the best time to do a MAPS? Tāngata whaiora agreed with kaimahi that discharge could be a good time to complete their MAPS. However, who decides when someone is well enough to do so remained a potential issue. Developing and completing a MAPS may take time, and there needs to be allowance for this process.

• Accessibility. This was a huge theme in terms of accessibility of the design and where it would be stored, who would have access to it, and how tāngata whaiora would have access to it.

• Person-led. To promote MAPS positively, it must be person-led. For example, they should be presented as an individual choice with appropriate language and made available in various settings through word of mouth without making it mandatory.

• Staff workload, systems integration, and the number of plans already in place may negatively impact MAPS implementation. Embedding MAPS in existing systems and workloads was suggested. Mapping out all plans and connections was considered essential. Tāngata whaiora suggested integrating MAPs into personal health tools.

• Support to develop, if needed. All identified the idea of having some kind of assistance to facilitate the completion of MAPS. Kaimahi Māori thought kaimahi assistants could fulfil this role.

Additional themes that came from all tāngata whaiora focused on options, engagement and trust, and peer support.

• Options. The priority for tāngata whaiora was ensuring access to appropriate options. Options for developing a MAPS included collaborating with people they knew, including whānau and people from the clinical team, having support to complete the MAPS, or people being able to complete it themselves.

• Engagement and Trust. For tāngata whaiora, the overarching important attribute was that they trusted whoever was involved with their MAPS. Additionally, tāngata whaiora expressed the expectation that there would be some form of debriefing as to why a MAPS was not followed.

• Peer support. Tāngata whaiora identified peer support people to assist in completing a MAPS.

Kaimahi also said MAPS could be a collaborative undertaking.

Regarding the development of a MAPS, kaimahi (general) suggested a person-led collaborative undertaking. They identified that developing the MAPS through this kind of process would have an impact when it came to being implemented.

For tāngata whaiora Māori, there was a tension between working collaboratively with others and being able to make their own choices.

They emphasised that collaboration was not solely the responsibility of Māori. They also highlighted needs beyond just relief of symptoms and distress. These included being treated with respect and recognition of their identity, as well as being treated equally and without discrimination. The latter is particularly important given that experiencing states of whakamā can impact overall health and wellbeing. It takes personal courage to self-advocate within services that can cause anxiety and stress.

Kaimahi and tāngata whaiora Māori both suggested the importance of a Māori-centric process (manaakitanga, kai, karakia, whanaungatanga, rituals, hui).

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3. & 4. What might ENABLE or DISABLE MAPS working in practice?

Perhaps the most emphatic message across all hui was the completion and use of MAPS must be based on trust, respect and tāngata whaiora being heard.

Other themes that came across all hui included staff attitudes, staff workload, systems integration, promotion, education and training, and limited options.

• Staff attitudes. Most tāngata whaiora considered staff attitudes as a key enabler in terms of seeing the value in MAPS as an expression of tāngata whaiora voice, and hence taking MAPS seriously and following preferences recorded through them. This was reflected in practice by ‘clinicians talking about, accepting, and acknowledging them’. Part of this consideration involved recognising the power imbalance and the vulnerability of tāngata whaiora in engaging with staff and these tools when others then have the power to decide whether to take them seriously. This was especially the case when tāngata whaiora had to overcome the impact of past experiences where they lost their voice, had not been believed or trusted and felt whakamā/shame. Relatedly, it was identified that it takes courage to self-advocate when ‘stuff doesn’t happen’. Tāngata whaiora identified staff following MAPS preferences and being consistent with their use will foster hope and trust. Conversely, staff ignoring MAPS, being disrespectful of tāngata whaiora voices and preferences, or not communicating about them would be barriers to implementation.

• Staff workload. This was a significant barrier identified by both groups, particularly by kaimahi.

• Systems Integration. Kaimahi identified the need for policy or guidelines, Key Performance Indicators (KPIs), routine tracking and reporting in support of MAPS. However, KPIs conflict with the theme of being person-led, including developing and using a MAPS carefully proposed (using the right language) as an individual choice that is not mandatory or forced (as KPIs are a mandated reporting requirement for staff). Enablers variously advocated by all groups included normalising, socialising, making MAPS visible in practice, promoting and applying widely and well across services (e.g. inpatient, community, GP, other agencies), having champions and reinforcers.

• Promoted and applied widely. To normalise MAPS, wide promotion was considered a priority. Preparing well – with lots of motivating factors – but then nothing happening was also identified as a potential barrier by tāngata whaiora. Tāngata whaiora felt word-of-mouth promotion by tāngata whaiora amongst whānau and friends would be a good way of making people aware.

• Education and training. All agreed that education and training for staff, tāngata whaiora, whānau are essential. Tāngata whaiora emphasised respectful, kind, non-judgmental engagement during MAPS.

• Limited options: awareness, access and availability. Kaimahi and tāngata whaiora Māori identified some barriers to accessing MAPS. Limited options, availability, and access to preferences were potential barriers for both groups. Kaimahi Māori suggested that respectfully communicating practical limitations would help overcome some of these barriers.

Additional themes from all tāngata whaiora hui emphasised disclosure fatigue and lack of accountability as a potential barrier.

General and tāngata whaiora Māori considered disclosure fatigue a potential barrier, but MAPS were also seen as helping by not having to tell one’s preferences time and time again. The lack of accountability for ensuring MAPS are followed was identified as a potential barrier by tāngata whaiora.

An additional theme of remoteness and isolation as a barrier came from tāngata whaiora Māori.

Tāngata whaiora Māori identified that remote locations and isolation from whānau were also barriers.

Kaimahi and tāngata whaiora Māori identified additional potential barriers related to Mental Health Act requirements and service practice, differing options, and cultural competence.

• Mental Health Act requirements and coercive practices as a potential barrier. For tāngata whaiora Māori, this was a very significant theme and included tyranny of medical history, fear of the system, feeling unsafe, imposed medical solutions, over-medicated, judgement about mental health treatment, and distrust of doctors/paternalism.

• Differing opinions. Kaimahi and tāngata whaiora Māori specifically identified differences of opinion between tāngata whaiora and staff or whānau as a foreseeable barrier.

• Cultural competence and dominance of Western paradigm. Kaimahi and tāngata whaiora Māori also identified that staff cultural competence generally was a barrier. Relatedly, the barrier of a dominant Western paradigm often did not allow space and time for cultural processes.

Ensuring the right spaces was also emphasised by kaimahi Māori.

Kaimahi Māori identified that the process of developing and implementing MAPS needed to be enabled by having the right spaces, including Māori spaces and time to enact cultural processes. It was important that the processes were not rushed.

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Next steps

The team is now busy finalising the tools and resources based on community hui and preparing for phase 2, which includes: