‘It absolutely needs to move out of that structure’: Māori with bipolar disorder identify structural barriers and propose solutions to reform the New Zealand mental health system

ABSTRACT

Objectives:

This paper synthesises critique from Māori patients with Bipolar Disorder (BD) and their whānau to identify barriers and propose changes to improve the structure and function of the New Zealand mental health system.

Design:

A qualitative Kaupapa Māori Research methodology was used. Twenty-four semi-structured interviews were completed with Māori patients with BD and members of their whānau. Structural, descriptive and pattern coding was completed using an adapted cultural competence framework to organise and analyse the data.

Results:

Three key themes identified the impact of structural features of the New Zealand mental health system on health equity for Māori with BD. Themes involved the accessibility, delivery and scope of the current health system, and described how structural features influenced the quality, utility and availability of BD services for Māori patients and whānau. Structural barriers in the existing design, and potential changes to improve the accessibility, delivery and scope of BD services for Māori, were proposed including a redesign of operational, environmental, staffing, and navigation points (information, transition, fatigue) to better meet the needs of Māori with BD.

Conclusion:

A commitment to equity when implementing structural change is needed, including ongoing evaluation and refinement. This paper provides specific recommendations that should be considered in health service redesign to ensure the New Zealand mental health system meets the needs of Māori patients with BD and their whānau.

KEYWORDS:

• Māori
• indigenous peoples
• bipolar disorder
• mental health services
• structural racism
• health system
• health equity
• qualitative

Introduction

The health system is a social determinant of health (World Health Organization 2010). Like other social determinants, health systems contribute to and maintain health inequities that unfairly disadvantage Indigenous peoples. Inequities arise as the health system fails to address differential ‘exposure and vulnerability to health-compromising conditions’ (World Health Organization 2010, 5), by advantaging majority ethnic groups who receive better access, experiences and quality of care (Reid, Cormack, and Paine 2019). The health system structure includes design features and processes that determine who, when and how care can be accessed, which services are available, where and how they are delivered, and who provides them (Betancourt et al. 2003). These structural health system features contribute to differential access to and through care, impacting the quality and efficacy of services available to Indigenous peoples (Betancourt et al. 2003; Durie 2011; Kirmayer and Jarvis 2019; Lopez-Carmen et al. 2019; Molloy et al. 2018; Newman 2009; Reid, Cormack, and Paine 2019). Structural changes to the health system have been recognised as one potential strategy to address health inequities caused by the social determinants of health (Betancourt et al. 2003; Durie 2011; Kirmayer and Jarvis 2019; Lopez-Carmen et al. 2019; Molloy et al. 2018; Newman 2009; World Health Organization 2010).

There is an established need for international health research designed to increase knowledge and improve outcomes for Indigenous peoples experiencing mental illness (Anderson et al. 2016; Kirmayer and Pedersen 2014; Kirmayer and Jarvis 2019; World Health Organization. 2013). Patient-centred research has the potential to increase knowledge about global mental health inequities, by utilising the expertise of Indigenous health service users to provide novel insights about barriers and potential structural solutions to improve mental health care (Braun and Clarke 2019; Haitana, Pitama, Cormack, et al. 2020; New Zealand Government 2018; Palmer et al. 2019). Despite this, few studies have positioned Indigenous patients and their families as experts to decolonise and redesign the mental health system in alignment with their expectations and health needs (Haitana, Pitama, Cormack, et al. 2020; Palmer et al. 2019).

Bipolar Disorder is one of several serious mental health conditions that has a significant impact on a person’s life, and contributes to a high degree of health burden worldwide (Ferrari et al. 2016). Research suggests that some Indigenous populations experience higher community prevalence rates of BD, including Māori the Indigenous peoples of New Zealand (Baxter et al. 2006; Blanco et al. 2017; Grant et al. 2005; Waitoki et al. 2014). A recent systematic review of BD in Indigenous peoples noted an extremely limited evidence base, recommending Indigenous research designed to identify the impact of systemic factors on current health inequities (Haitana, Pitama, Crowe, et al. 2020).

The purpose of this qualitative paper is to identify barriers within the structure of the New Zealand mental health system and propose solutions to achieve health equity for Māori patients with BD and their whānau (family/support networks). A cultural competence framework (Betancourt et al. 2003) was adapted as an analytic frame to give voice to participants’ critique and propose structural reforms to healthcare. This is the second of three planned results papers from the qualitative study (Haitana et al. 2021).

Methods

Research approach and paradigm

An Indigenous methodology, Kaupapa Māori Research (KMR), informed this qualitative study (Smith 2012). The methodology and methods are described in detail elsewhere (Haitana, Pitama, Cormack, et al. 2020). Methods chosen aligned with KMR principles, to achieve the study aim and identify how systemic factors influenced equity in health outcomes for Māori patients with BD and their whānau.

The methodology and methods described in this paper form part of a wider project titled the Māori and BD Research Project (MBDRP), which aimed to identify knowledge and prioritise strategies to improve outcomes for Māori with BD. The MBDRP involved three-phases and employed multiple research methods. Phase one involved an epidemiological study of New Zealand mental health service data. Phase two formed the basis for this paper, and involved qualitative interviews. Phase three utilised focus groups with key stakeholders and decision makers involved in delivering mental health services to Māori with BD and their whānau.

Context

The New Zealand health system, while planning reform, is currently structured hierarchically (New Zealand Government 2021). This includes: primary care delivered by doctors in General Practice (GPs); community-based services; outpatient and inpatient hospital services delivered regionally by 20 District Health Boards (DHBs); and non-governmental organisations (NGOs). Mental health care for BD generally requires a GP referral to DHB services, and can include periods of inpatient or community-based treatment delivered by multi-disciplinary teams (MDT) within a psychiatric care model. The composition of services and teams can differ between DHBs, meaning experiences of care may change depending on where in New Zealand a person lives (New Zealand Government 2018).

Sample

Twenty-four semi-structured interviews were completed across three New Zealand sites selected for their range of mental health services, rural and urban loci. Table 1 summarises self-reported demographic information for Māori patients with BD (n = 24) who participated. Over half of interviews included the perspectives of patients together with one or more whānau members (n = 19). All patients had a BD diagnosis with a stable mood at interview. Mental health staff gave study information to eligible patients, and interested participants were then recruited by the research team. No exclusions were made for co-morbidities. A purposive sampling frame recruited men and women of differing ages across sites. Participants provided written informed consent before interviews.

Table 1. Participant demographics for Māori patients with BD.

	Interviews (n = 24)	Percentages
BD Diagnosis
Type I	20	83.3%
Type II	2	8.3%
NOS	2	8.3%
Inpatient Admissions
Yes	22	91.7%
No	2	8.3%
Whānau at Interview (n = 19)
Yes	13	54.2%
No	11	45.8%
Psychiatric Comorbidity
Yes	12	50.0%
No	12	50.0%
Physical Comorbidity
Yes	9	37.5%
No	15	62.5%
Age Range
16–24	2	8.3%
25–44	8	33.3%
45–64	12	50.0%
65+	2	8.3%
Gender
Men	10	41.6%
Women	14	58.3%

Ethics

Ethical approval was received from the Health and Disability Ethics Committee of New Zealand (ID:16/STH/137). The CONSolIDated critERia for strengthening research involving Indigenous peoples (CONSIDER statement) was utilised to align the study with Indigenous research guidelines and priorities (Haitana, Pitama, Cormack, et al. 2020; Huria et al. 2019).

Procedure

Interviews were conducted in-person by two of the research team between December 2017 and August 2019. Venues included participants’ homes, health services, or a research unit. The interview schedule was informed by a systematic literature review (Haitana, Pitama, Crowe, et al. 2020b), and adaptation of a cultural competence framework (Betancourt et al. 2003). Questions explored the impact of structural features of the health system on participants’ hauora (wellbeing), and were framed around questions about current systemic barriers impacting Māori and proposed solutions to these.

Data collection and processing

Interviews were recorded, transcribed and analysed by the research team. Transcripts were anonymised assigning numbers to each interview (1–24), participant (P1-P24) and their whānau (W1-W24). Where multiple whānau were present, an interview number and letter was assigned (W1a, W1b, W1c). NVivo12 data management software was used to display transcripts, code data, and refine codes, categories and themes and monitor saturation across themes and sub-themes.

Data analysis

Two coding cycles were completed (Saldaña 2016). Cycle one involved two phases. Phase one used a structural coding method and an adapted cultural competence framework from Betancourt et al. (2003) to group data into participants’ critique of clinical, structural, and/or organisational features of the New Zealand health system.

Betancourt et al. (2003) defined the ‘structural’ component of the health system to include the structure and function of health care systems that influence access, design and delivery of services. Based on the coding process, the criteria for inclusion widened to incorporate the design of health services: including the settings where health services operate from; how health services are accessed/staged/phased; and the systems and processes that impact service delivery and outcomes for Māori patients with BD and their whānau. For this paper, only findings and analysis from the ‘structural’ code drawn from Betancourt et al.’ (2003) adapted analytic frame will be presented.

Phase two used descriptive coding to identify topics within the structural data. Coding cycle two then used pattern coding, where related codes and categories from the first cycle were grouped. Groupings provided breadth and depth to understand the phenomenon being explored forming a theme. This was repeated until theoretical sufficiency was met, measured by the depth of commentary across interviews, and the point at which no further codes, categories or themes were identified.

Coding notes were recorded during both coding cycles to synthesise the detail contained within coded transcripts. Notes were then displayed within a table, reviewed by authors, and reorganised according to whether they reflected problems within the existing structure of the health system, or proposed solutions to these. Coding notes were then reorganised into the themes and related sub-themes identified through pattern coding.

Data display

Findings will be presented by first defining each theme, then presenting the nuances of related sub-themes using quotes to elucidate these. The details of proposed structural changes that would enhance services are then presented within a table format to highlight the breadth of participants’ review of mental health services within each sub-theme. Tables synthesise the analysis, with some proposed structural changes taken directly from interview transcripts and others inferred directly from identified barriers. Language within the tables has been intentionally framed to uphold the mana (prestige) of participants by presenting a strengths-based structural redesign for health services.

Results

Three themes reflected participants’ critique of structural features of the New Zealand health system and their impact on service provision for Māori with BD and their whānau. Themes related to accessibility, delivery, and scope. Figure 1 illustrates these themes and their related sub-themes.

Figure 1. Themes and sub-themes of structural features of the health system.

Accessibility

The theme of accessibility included design features of the health system and processes that impact access to and through health services, as well as the accessibility of quality and timely care for Māori patients with BD and their whānau. The theme was further defined by sub-themes involving the degree to which operational, environmental, staffing, and navigation-information influenced accessibility. Nuances of each accessibility sub-theme will now be described.

Operational-accessibility sub-theme

The operational-accessibility sub-theme included participants’ critique of the hours of service operation, including clinic hours, visitation times, and ward rounds; as well as processes for scheduling appointments, and the impact of these processes on access to BD services for Māori.

Appointments are great, but mental illness doesn’t happen between 8.00am and 5.00pm, it happens at any time and often at night. So, being told by emergency on the phone to have a bath is not helpful. (W1)

Operational features of the health system included the degree to which services were designed to care for individuals with BD as opposed to whānau, and the impact by design on whānau accessibility.

As a whānau, if you are working with an adult you can’t force them (to access services). You don’t know what options are available. You don’t know what the GP can do versus what the mental health team can do. You don’t know how to access the mental health team. (W2)

Participants also identified processes embedded in the health system, including costs, that influenced whether services or treatments were accessible to Māori patients with BD and whānau.

I went and talked to a GP and luckily we had free GP access, so they were able to diagnose depression and put me on some medication. (P1)

Her medications cost about $45 a week. If she wasn't under the Mental Health Act¹ she'd have to pay that. (W3)

Operational-accessibility barriers and solutions were evident from the analysis of Māori patient and whānau experiences of BD service accessibility. Attributes of a redesigned health system to address operational barriers and enhance accessibility for Māori patients and whānau have been synthesised in Table 2.

Environmental-accessibility sub-theme

In the environmental-accessibility sub-theme, participants’ identified environmental features of services that impacted accessibility for Māori patients with BD and their whānau. Environmental-accessibility features included the location, proximity and costs of travelling to and from services.

I was sent to an addiction service. It was on a Tuesday night. I couldn’t really get over to that side of town. (P2)

Participants also reported limited availability of suitable spaces for the provision of health care for Māori patients and their whānau in existing mental health facilities.

Table 2. Operational-accessibility sub-theme: barriers and solutions.

A. Operational features of the health system will be redesigned to facilitate BD service access for diverse Māori patients/whānau by:
Expanding the hours/days of service operation. Offering flexible appointment scheduling. Increasing options/availability of respite care. Offering options for home based care with whānau and in-home service support (including arranging caregiver payments/income support).
B. Costs of GP visits & brief consultation times for Māori with BD will be addressed by:
Fee-free 30 min primary care visits to support GP managed care. Automatic approval of Community Services Cards^a following BD diagnosis. Automatic approval of green prescriptions following BD diagnosis. Systems to monitor repeat primary care visits then prioritise specialist referrals. Inpatient care for patients with BD that incorporates physical health screens and treatments to improve hauora and support the primary care team upon discharge.
C. Costs of prescriptions & complex prescribing regimes for Māori with BD will be managed to optimise hauora by:
Fee-free prescriptions during acute illness phases or for patients on fixed low incomes. Information sheets detailing patient’s current daily medication regimes (i.e. morning – X, Y, Z, must be taken with food, etc.). Fee-free daily blister packs for patients with complex medication regimes.

^a Community Services Cards are administered by income support services and entitle card holders/ whānau to reduced costs of some health services and prescriptions.

It's actually pretty horrible. They let my husband come and sleep with me there at night in a room by each other (he slept on the floor). Otherwise it didn’t feel safe to be honest. (P3)

In addition, participants identified constraints through insufficient resources in specific services or environmental features of facilities that limited their access to culturally safe, competent and equitable health care.

When she's in the round room, we're not allowed to talk to her. They leave her for long periods of time on her own. They don't even bless the room. (W3)

Environmental-accessibility barriers and solutions were evident from the analysis of Māori patient and whānau experiences of BD service accessibility. Attributes of a redesigned health system to address environmental barriers and enhance accessibility for Māori patients and whānau have been synthesised in Table 3.

Staffing-accessibility sub-theme

Participants’ identified that staffing and duty rosters impacted access to effective care. Staffing-accessibility was influenced by: staff roles and ratios, particularly staff specialised in BD care; the diversity of roles in an MDT; the diversity of the health workforce; accepted clinical caseloads; and patient:staff ratios in hospital.

They treat you like a number in there (hospital). The nurses hide from you. Because they have 93 patients and 67 beds. It’s too stretched. (P2)

Structural factors also influenced accessibility of staff with specialist skills to treat Māori with BD, like psychiatrists, psychologists and Māori mental health workers. Participants recognised that staffing-accessibility reflected current recruitment and retention priorities, meaning improved accessibility for Māori required prioritisation of staff with proven clinical and cultural competencies.

Table 3. Environmental-accessibility sub-theme: barriers and solutions.

A. Environmental-accessibility barriers through BD services delivered from fixed locations will be resolved by:

A flexible/mobile model of service provision including outreach with rural clinic days. Specialist Māori social work roles resourced to mitigate transport/service accessibility barriers for patients and whānau.

B. The instability of the mental health workforce & capacity gaps in some regions/services will be resolved by:

Greater funding to attract and stabilise the workforce in underserved regions/services. A dedicated psychiatrist for each service location (i.e. including mobile/teleclinics).

C. Barriers due to limited inpatient beds for acute care will be addressed by:

Increased inpatient beds, using a tiered system encompassing inpatient hospital care, respite facilities and home based care with in-home service support. Staff resourced to work with whānau, and inpatient facilitates where whānau-led care is integrated into the hospital care plan.

That’s the reality of the support we have from Māori health workers. Otherwise people (staff) don’t even know what we’re talking about. For (Māori patients and whānau), Mātauranga Māori² needs to be in more depth in services to understand the influence of different values and different belief frameworks. (W4)

Some of the worst people (gain employment) in the mental health system and just become part of that system. The ones that are good don't stay, or don't get (their employment) renewed. (W3)

Staffing-accessibility barriers and solutions became apparent from the analysis of Māori patient and whānau experiences of BD service accessibility. Attributes of a redesigned health system to address staffing barriers and enhance accessibility for Māori patients and whānau have been synthesised in Table 4.

Navigation-information sub-theme

The navigation-information sub-theme involved participants’ critique of multiple access points in BD services, and the lack of support or information designed to assist Māori patients and whānau to navigate to and through care.

It could be easier to see a psychiatrist (about your bipolar disorder). Because if you are out of the system, you can’t actually get back into the system to see one. (P4)

Participants identified that health systems need to allocate time and resources to relay information that supports Māori patients and whānau to navigate access to BD care to improve the accessibility of all available interventions, including medications.

Table 4. Staffing-accessibility sub-theme: barriers and solutions.

A. Staff will improve accessibility for complex BD symptom presentations by:
Resourcing psychiatry to support GP managed care in the community.
B. Accessibility barriers through an unstable, under-staffed mental health workforce will be resolved for Māori patients and whānau by:
At least one fulltime equivalent Māori mental health worker for each service/site. A competent mental health workforce responsive to the needs of diverse whānau Māori (Māori patients and their families/support networks) supported by in-service/cross-service peer education time. Access to clinical psychologists/allied health staff trained in talk therapies.
C. Staff will facilitate access to timely/quality/effective BD care for Māori in services when:
Staff are trained to work with Māori patients as well as their whānau. Staff are resourced to work with whānau to provide in-home support and care. Health staff routinely screen the mental health of patients with BD after stressful medical/life events (i.e. miscarriage of pregnancy, loss/grief) and proactively refer to mental health services to prevent relapse.

It would have been helpful if my school had offered a psychologist’s viewpoint, to understand mental illness. We didn't have any education about that. (P5)

There was no explanation about why I was taking medication, or what my condition was. More information is needed. (P6)

Navigation-information barriers and solutions were evident from the analysis of Māori patient and whānau experiences of BD service accessibility. Attributes of a redesigned health system to address navigation-information barriers and enhance accessibility for Māori patients and whānau have been synthesised in Table 5.

Delivery

The delivery theme included critique about how BD services and interventions are designed and delivered to Māori patients and whānau, and the impact of service designs and delivery on health outcomes. The theme was further defined by sub-themes involving the degree to which operational, environmental, staffing factors, and navigation-transitions influenced the delivery of services to Māori with BD.

Table 5. Navigation-information sub-theme: barriers and solutions.

A. Accessibility will be enhanced for Māori patients/whānau informed about BD diagnosis/services/treatments by:
Resources that explain key staff roles/responsibilities in BD services, and when/why/how care might transition to other services. Resources/tools/training to assist patients/whānau to monitor and track symptoms of BD that inform service re-referrals and treatment/medication changes. Resources to reduce fear/uncertainty explaining what to expect before/during inpatient care. Information explaining planned treatment/side effects/prognosis/recovery to facilitate engagement, informed consent and collaborative decision making. Poroaki hui (discharge meeting) with patients/whānau to review progress, develop a maintenance plan, address questions, and facilitate onward referrals before discharge.
B. Information to navigate crisis points in care will enhance accessibility for Māori by:
Clear, consistent points of crisis entry to services, and readily available information about access (i.e. pamplets, signs, websites, text). Information sharing between regions after repeat crisis/inpatient contacts to facilitate proactive onwards referral to patients for specialist BD care.

Nuances of each delivery sub-theme will now be described.

Operational-delivery sub-theme

The operational-delivery sub-theme involved critique of processes, methods and design features that influenced how services were delivered to Māori patients with BD and their whānau, as well as the impact of delivery approaches on health outcomes.

Contact with mental health needs to be empathic and give hope. It is a deficit model, what you can’t do, not what you can do. It is so negative. (P7)

Participants identified that mental health service delivery was not designed to be collaborative, holistic or responsive to the needs of Māori patients and whānau or enhance their personal and social resources. Instead the service delivery model was hierarchical, focused on alleviating symptoms without considering wider aspects of patient and whānau wellbeing.

It absolutely needs to move out of that structure. The hierarchy where the psychiatrist is at the top, and over here somewhere is the patient. It needs to flatten out. (P8)

Participants’ critique reflected the need for service delivery processes and procedures to include evaluations to improve quality, safety, and achieve equity of care delivered to Māori patients with BD and their whānau. The need for collaborative BD service delivery in partnerships with Māori patients and whānau featured strongly in critique of the current operational-delivery approach.

All in all, I was involved with multiple services. It turned into so many relationships breaking down. My Māori health worker was the only consistent person. Services can’t be so separated with one person in between. (P9)

Operational-delivery barriers and solutions were evident from the analysis of Māori patient and whānau experiences of BD service delivery. Attributes of a redesigned health system that address operational barriers and enhance delivery of services to Māori patients and whānau have been synthesised in Table 6.

Environmental-delivery sub-theme

The environmental-delivery sub-theme involved participants’ critique of facilities where BD services were delivered to Māori, and whether facilities were equipped to deliver care aligned with Māori health models, values, beliefs and practices.

In hospital you are left sitting with people that are ill. I don’t think that is healthy. You don’t have anything else to do and that’s no good. They (hospitals) make people more ill. (P10)

Participants identified the need for models of service delivery to be equity-based to minimise regional variations in standards of care between BD services across New Zealand.

Table 6. Operational-delivery sub-theme: barriers and solutions.

A. An expanded operational-delivery approach to BD care will improve responsiveness to Māori patients/whānau beyond an illness-focus by:
Incorporating Māori patient/whānau strengths and resources into assessments and building on them in the treatment plan. Collaborating with patients/whānau to closely monitor functional impacts of medications over time and minimise adverse/over-medicating. Cross-service, shared care plans for patients with co-morbid mental/physical health conditions to tailor timing/phasing of treatments/enhance wellbeing. Sharing information about patient wellbeing between mental health/social services to automatically adjust supports as/when needed (led/facilitated by specialist Māori patient/whānau social work role). Completing wellbeing reviews that attune services to risk factors/early warning signs after relapse and guide wellbeing/relapse prevention planning.
B. Adapt from a hierarchical, psychiatric model of BD service delivery for Māori patients/whānau by having:
A patient/whānau-centred delivery model, where clinicians work in partnerships and support agreed to recovery goals. Regular discussions about prescribed medications, their purpose in managing BD, the likely length of treatment, anticipated side effects, interactions with non-prescribed substances, and options/alternatives if medications are ineffective to maintain patient/whānau/service treatment partnerships. Services delivering knowledge/skills/resources that support patients/whānau to live well/independently with BD.
C. Address harmful legislation/seclusion/restraint/security practices in services to protect Māori patients/whānau by:
Collaborative safety/risk management planning with patients/whānau. Reviews with patients/whānau if legislation/seclusion/restraint/security is used to refine safety/risk management plans. Accessible inpatient care plans to enhance orientation to person/place/time and improve wellbeing in hospital (i.e. visible daily schedules).
D. Address variation in the standards/quality of BD care delivered to Māori patients/whānau increasing consistency across services/regions by:
Publishing objectives for quality/equitable BD care. Measuring/reporting progress towards equity improvements for all services/regions.

I don’t know if it is the district, but it is really slack here (at this site). My psychiatrist is trying to get me off the books. Whereas in the other district, I had my psychiatrist for two years and a social worker who saw me every week. I have had none of that here. (P11)

Participants critiqued service delivery confined to clinical settings, which contributed to stigma and reduced opportunities to normalise participation in community-based wellbeing or hauora focused activities.

There is a focus (in health services) on the clinical presentation as opposed to how the patient actually feels. From my perspective the system has to change. This fella, he’s a fitness fanatic. So going for a walk up your maunga³, going on your awa, connecting with the whenua as opposed to only medicating. (W5)

Environmental-delivery barriers and solutions were evident from the analysis of Māori patient and whānau experiences of BD service delivery. Attributes of a redesigned health system to address environmental barriers and enhance service delivery for Māori patients and whānau have been synthesised in Table 7.

Staffing-delivery sub-theme

In the staffing-delivery sub-theme, processes and procedures that influenced the way staff delivered health care were identified, as well as the impact of staffing factors on the delivery of safe and effective care to Māori patients with BD and their whānau.

They didn't tell me it was bipolar disorder. l stayed in hospital for two weeks on pills then they let me go. They asked questions, that's all. In hospital four staff leaned on my back and shoved me with an injection. That didn't help. I suppose the injection did, but not the way they did it. (P12)

Participants identified that staff wellbeing needed to be prioritised by the health system in order to deliver effective care for BD, and staff needed to be resourced to deliver culturally safe and competent care consistently to whānau Māori.

Table 7. Environmental-delivery sub-theme: barriers and solutions.

A. Environmental-delivery standards will maintain effective cross-region/cross-service delivery for Māori patients with BD/whānau by:
Tangible/measurable care standards to guide regions/services/staff in delivery. Delivery standards/service audits/staff key performance indicators to monitor/maintain expected standards of care. Regular cross-service/cross-region peer supervision/case consultations/virtual meetings resourced to monitor/maintain expected standards of care.
B. Inpatient services for BD improve responsiveness to Māori patients/whānau beyond an illness-focus by:
Sructured/therapeutic/constructive activities/groups in hospitals, scaled up by community services to support continuous patient/whānau wellbeing. Investing time/resources connecting patients/whānau with other supports/positive events/wellbeing activities/services in their local community.
C. Service delivery for BD redesigned to meet the needs of Māori patients/whānau outside of clinical settings will:
Use community resources/settings to reinforce whenua (land)/whakapapa (genealogy) and whānau connections aligned with treatment goals. Deliver care in community settings using local resources aligned with treatment goals (i.e. if goal is physical activity – completing reviews while walking nearby).

Some staff were kind. But most of those staff aren’t here now. I liked them because they included a Māori kaupapa⁴ and tikanga. But during the years and the changes of the service, they cut that back. I miss it. (P13)

In addition, participants identified that health systems needed to invest in staffing to deliver responsive care to Māori consistently by providing ongoing training and workforce development.

Increasing the Māori mental health workforce would be great. Creating easier pathways to enter that workforce around equity. I understand how important that is, and the competencies required. Not increasing the workforce just because they're Māori, but being able to bring out their innate ability to engage with Māori clientele. (P14)

Staffing-delivery barriers and solutions were evident from the analysis of Māori patient and whānau experiences of BD service delivery. Attributes of a redesigned health system to address staffing barriers and enhance delivery of services for Māori patients and whānau have been synthesised in Table 8.

Navigation-transition sub-theme

The navigation-transition sub-theme critiqued transition points in the hierarchy of the health system, and the impact on whānau Māori of the approach to managing or delivering service transitions for BD.

We got home from school once and our mother wasn't home. There was a note saying the police had taken her away. Another time we (children) were left in the house, and I had to climb to reach the phone and ring someone. Time and time again. (W6)

Participants critiqued the poor design and misalignment of navigation processes with the lifecourse persistence and relapsing course of BD, which lacked resources at transition points to support Māori to mitigate the inequitable burden of the social determinants of health.

Table 8. Staffing-delivery sub-theme: barriers and solutions.

A. Staffing-delivery barriers arising from the illness-focus of BD care will be addressed for Māori patients/whānau when:

Whakawhanaungatanga (process of establishing relationships) and manaakitanga (process of showing respect, generosity and care for others) are delivered by staff fostering partnerships with patients/whānau in treatment. Job descriptions include operational tasks (see Table 6, A) in role expectations/performance measures of staff. Staff are skilled/resourced to deliver services effectively with whānau. Staff are skilled/resourced to incorporate religious beliefs/faith practices in service delivery (could include a network of chaplains for staff to consult as required). Feedback from patients/whānau informs continous delivery improvements.

B. Delivery barriers through an unstable, under-staffed mental health workforce will be resolved for Māori patients and whānau by:

Staff wellbeing skills/training/measurement to prevent burn-out/compassion fatigue and retain the mental health workforce. Clinical contact/non-contact time to support staff self-reflection/holistic care planning and achieve equitable service delivery standards. Staff resourced to complete hand-overs/transitions/whakawhanaungatanga to facilitate transfers of partnerships between patients/whānau/new staff. Adaptive staff:patient ratios in inpatient care maintains manageable workloads, minimises stress, and prevents harmful service delivery.

C. Staffing-delivery standards will maintain effective cross-region/cross-service delivery for Māori patients with BD/whānau by:

Staff trained/resourced to complete cross-service communication/peer supervision/case consultation to maintain service delivery standards.

D. Inpatient services will deliver therapeutic BD care to Māori patients/whānau by:

Staff ratios in wards that adapt to maintain therapeutic service delivery. Care plans developed with whānau, including provision for whānau to stay on the ward, to support partnered delivery of care during inpatient stays.

I had a breakdown. They took my kids and put me in hospital. Then nobody followed me up. I was back out with nothing and left to my own devices. (P15)

Participants also identified problems with how navigation-transitions were delivered in the health system with whānau Māori, and described the need for processes to facilitate effective transitions between services for Māori patients with BD and their whānau.

The referral could be done differently. My whānau and I had to wait a month before a psychiatrist called. That’s a long time if you don't know when help is coming. Crisis resolution was much better on my fourth episode than my first. (P5)

Navigation-transition barriers and solutions were evident from the analysis of Māori patient and whānau experiences of BD service delivery. Attributes of a redesigned health system to address navigation-transition barriers and enhance delivery of services for Māori patients and whānau have been synthesised in Table 9.

Scope

The scope theme included critique about limitations within the design and structure of the health system, the impact of this on service availability, and necessary changes to scope to effectively address the needs of Māori patients with BD and their whānau. The theme was further defined by sub-themes involving the degree to which operational, environmental, staffing factors, and navigation-fatigue were impacted by the existing scope of services. Nuances of each scope sub-theme will now be described.

Table 9. Navigation-transition sub-theme: barriers and solutions.

A. Waitlist/referral management systems optimised to navigate transitions in BD service delivery for Māori patients/whānau will:
Provide psychiatry time/resources to support GP management/re-referrals to secondary/inpatient services in response to emerging BD symptoms. Employ waitlist/referral systems to inform patients/whānau/GP of: referral status; wait times; symptom management; other available services. Use technology to transition care if patient/whānau wellbeing worsens. Automate GP-psychiatry consults if patients re-present after declined referrals.
B. Service delivery and transitions of care for complex, changing BD symptomology will be enhanced for Māori patients/whānau by:
Approved prescription ranges for each medication allowing doses to be altered by GPs if indicated. Approved PRN medication/s to prevent acute readmissions/relapse of BD (i.e. medications to aid sleep) for GPs to prescribe if indicated. Psychiatry time/resources to support GPs to make urgent alterations to medications, and address errors/omissions from scripts.
C. Service transitions for Māori patients/whānau responsive to the chronic/fluctuating lifecourse persistence of BD will:
Establish communication plans (phone/email/text) based on patient/whānau preferences to ensure key information is conveyed/received/understood/actioned. Tailor care to the patient/whānau context and stage of illness (i.e. appointment times aligned with work/family; access to relevant support/services for whānau; information about indicators of relapse to facilitate re-referrals). Provide medical certificates^a for income support as required. Facilitate education/training/housing/employment referrals as BD symptoms stablise to improve wellbeing and address the social determinants of health.
D. Navigation-transitions will optimise relapse prevention support for Māori patients/whānau by:
Care arrangements to social services/agencies completed prior to discharge to prevent repeated stress-induced crisis re-admissions.
E. Navigation-transitions will optimise acute BD care delivered in partnerships with Māori patients/whānau by:
Pre-admission plans arranged at discharge to facilitate inpatient access/reduce harmful re-admissions if required. Interim care plans with whānau if immediate admission is not possible (i.e. intoxication, police involvement, lack of bed space).

^a Medical certificates are completed by a doctor, and can be used as proof of illness or injury requiring time off work, or income support.

Operational-scope sub-theme

The operational-scope sub-theme involved critique about processes and design features of the health system that limited the quality or scope of care currently available to Māori patients with BD and their whānau. Participants’ identified limitations in scope through adherence to a biomedical model of health, the impact of separate services, and the silos this created leading to gaps in care.

We tried for years to get them to look at the head injury she sustained. They (mental health services) just didn’t want to know. (W3)

Triggers (to relapse) have been repetitive thoughts, grief, close people passing away. None of the services have picked up on that. (P4)

Participants also identified complete care omissions due to stress points in the existing structure, design and capacity of services for Māori with BD. Omissions in service scope were evident by high ongoing demand for crisis and inpatient care, which participants saw as reflecting the cumulative impact of constantly unmet needs for services and support.

The amount of suicides in this district is phenomenal. We have to treat people killing themselves seriously. We absolutely need more respite. What is the point of (mental health staff) asking what you want if there is nothing to offer. (P11)

In addition, participants critiqued the lack of integration of Māori values, beliefs and practices into the design and scope of current service provision.

On discharge it would be good for family members to be there so they can hear from doctors. Then I would get a chance to speak on a personal level. A poroaki⁵ process would be awesome. (P16)

Operational-scope barriers and solutions were evident from the analysis of Māori patient and whānau experiences of the scope of BD services. Attributes of a redesigned health system to address operational-scope barriers and enhance the scope of services for Māori patients and whānau have been synthesised in Table 10.

Environmental-scope sub-theme

The environmental-scope sub-theme included critique about the limitations of operating health care services for BD from fixed locations, particularly when they were long distances from where Māori patients and their whānau lived and worked. Environmental features were also noted to limit the scope of care available particularly in regions that were under resourced due to their rural loci.

There was a different doctor every time I went in. So consistent care is really important, because then you're able to build up relationships with those doctors. Securing funding to have a psychiatrist and making it attractive for that doctor to be here (in this district) is needed. (P14)

Participants who moved between regions or lived overseas identified further limitations in scope due to separate information management systems, and the challenges of having to then relay their own medical history to services and whānau.

Table 10. Operational-scope sub-theme: barriers and solutions.

A. The scope of service operations for BD will extend from a bio-medical model to encompass holistic Māori models of hauora for patients/whānau by:
Providing interventions for known relapse triggers (i.e. grief/loss/physical illness); cross-service re-referrals from services alert to BD symptoms, and sharing cross-service management of physical health needs. Parallel services resourced to address low/moderate severity mental/physical health conditions (i.e. structured/group delivery of skills/strategies to manage stress/distress/wellbeing), to prevent chronic illness/comorbiditiy.
B. An operational-scope of BD services designed for Māori patients/whānau will:
Coordinate patient information/transfer systems with services primed to support whānau of patients who present unwell in different regions/overseas.
C. An operational-scope of BD services for Māori will ensure medications are collected, medically reviewed and/or medically withdrawn if ineffective by:
Digitally linking prescribed medications with filled prescriptions, to schedule and complete medication reviews and physical health monitoring. Pharmacy-level advice at point of filling prescriptions reinforcing the need for medically guided withdrawal from medications/physical health monitoring.
D. A trauma informed scope of BD services for Māori patients/whānau will:
Centralise mental health services with one team, allocating ACC sensitive claims^a resources through a dedicated BD service where indicated. Support patients/whānau before/after service contacts (i.e. poroaki process) to prevent traumatic impact of BD diagnosis/admission/exposure to inpatient settings (particularly for tamariki/rangatahi [children/youth]). Screen for traumatic precipitants to onset/relapse of symptoms/crisis presentations/inpatient admissions, develop safety plans to minimise trauma exposure, and engage a multi-agency, relapse preventation support team where indicated prior to discharge.
E. An operational-scope of BD services resourced to discontinue seclusion in inpatient care will:
Replace seclusion with a wellness oriented higher intensity care option in inpatient facilities.
F. An operational-scope of BD services resourced to manage risk will:
Offer a suite of proactive admission options/suicide prevention services.

^a ACC (Accident Compensation Corporation) administers a no-fault accidental injury compensation scheme. Sensitive claims involve injuries arising from sexual assault, and people impacted can receive treatment and financial compensation. For people with a mental health diagnosis caused by an injury, treatment may be provided by ACC, not mental health services.

They drugged me up, told me I would be on medication for life in Australia. Friends came and visited me but whānau didn’t know I was there (in hospital). Because I had no way out to the community or anything. (P17)

In addition, participants also noted the lack of consideration of Māori patient and whānau wellbeing in the design of facilities or provision of services as a further limitation of the scope of the health system that impacts the quality and efficacy of BD care.

Patient safety from other people in the ward is a big issue. I wasn’t the only Māori person with bipolar that was treated badly. I saw a lot really badly treated in seclusion rooms. That (seclusion) happened to me at every admission which is how I know. (P8)

Environmental barriers and solutions were evident from the analysis of Māori patient and whānau experiences of the scope of BD services. Attributes of a redesigned health system to address environmental barriers and enhance the scope of services for Māori patients and whānau have been synthesised in Table 11.

Staffing-scope sub-theme

The staffing scope sub-theme included critique about the absence of key roles designed specifically to address the wellbeing of whānau Māori within the existing structure of BD services. Participants noted that the scope of care for whānau Māori with BD was further limited by narrow role descriptions of existing staff, the high burden placed on the Māori health workforce, and skills shortages and unmet training needs for all staff.

I want to emphasise that I got a diagnosis, but not from a psychiatrist or clinician, I got it from several Māori kaumātua⁶ who came and organised a hui⁷ to get me out of hospital. They told me I had an illness from the Pākeha⁸ world. They looked after me, they were everything to me, and that contrasted with the way I had been treated by the Pākehā system. (P8)

The scope of existing staffing was further limited by the lack of mandated cross-service collaboration, where participants recognised the potential for services to expand the reach of their MDT through greater scope to undertake multi-agency and multi-service work.

Table 11. Environmental-scope sub-theme: barriers and solutions.

A. Services for BD with scope to address environmental/contextual barriers for diverse whānau Māori will:
Proactively investigate, identify and address barriers to engagement (i.e. flexibility to conduct mobile clinics at whānau homes, or locations that Māori patients/whānau feel at ease). Operate GP clinics within secondary care services for patients with BD. Tailor support to patient’s living situation (in/away from their tūrangawaewae^a). Establish whānau communication plans for Māori patients living in isolation/away from primary whānau support networks.
B. Health services will facilitate access to Māori/whānau-friendly spaces by:
Providing Māori/whānau-friendly spaces to facilitate/normalise Māori processes/practices/tikanga during provision of health care. Using natural features of the environment in care (i.e. awa [river], maunga [mountain], ngahere [native bush], etc).
C. Inpatient environments will expand from clinical containment to hauora by:
Wellness oriented design minimising patient/whānau exposure to vicarious trauma and prioritising safety in inpatient wards/settings. Inpatient services to enhance holistic Māori wellbeing including mauri ora (quality/vitality of life) and whānau ora (family/support network wellbeing). Providing kai ora (healthy food) in hospital with vegan/gluten-free/organic and traditional kai Māori options. Aligning hospitals with local community gardens/organic food/māra kai (traditional gardening) producers offering constructive inpatient activities and enhancing patient skills/training/employment opportunities.

^a Tūrangawaewae (place of origin/belonging/kinship ties) refers to whether a patient is living in or away from their traditional tribal homeland.

All staff should have the ability to complete education around different diagnoses and things that aren’t directly seen by their service. There definitely needs to be more cross-service education. Because services all have separate priorities with the person stuck in between. (P9)

Participants also critiqued the scope of care focused solely on psychiatric medications, which while helpful, failed to address underlying causal mechanisms due to an absence of psychologists working within services.

Prior to entering the mental health system, I got some counselling but that left me feeling very raw, very vulnerable. I mentioned to mental health services that I would really like to see a psychologist but they didn’t offer that service. I can’t afford to go and do the other work I need to do. There’s other people (with bipolar disorder) like that too. (P18)

Staffing barriers and solutions were evident from the analysis of Māori patient and whānau experiences of the scope of BD services. Attributes of a redesigned health system to address staffing barriers and enhance the scope of services for Māori patients and whānau have been synthesised in Table 12.

Navigation-fatigue sub-theme

The navigation-fatigue sub-theme involved participants’ critique of the burden caused by the limited scope of BD service designs and the adverse impact of this on Māori patient and whānau wellbeing.

When he is unwell it puts a real strain on our relationship. I am always the one trying to reach out for help. There needs to be a different approach from professionals. Otherwise it is me forever ringing them (services). (W7)

Participants identified the need for services to expand the scope of care so patients with an established diagnosis of BD did not have to repeatedly navigate multiple transition points to re-engage with services in response to signs of relapse.

Table 12. Staffing-scope sub-theme: barriers and solutions.

A. Staffing for BD services with scope to address environmental/contextual barriers for diverse whānau Māori will:
Include specialist secondary service Māori social work roles to facilitate access to appropriate services/social supports relevant to the age, stage of life, course of illness and whānau circumstances of the patient.
B. A trauma informed scope of BD services for Māori patients/whānau will:
Train staff in trauma informed care to implement operational changes listed above (see Table 10, D). Utilise specialist Māori social work role to facilitate multi-agency safety/wellbeing/hauora plans for Māori patients/whānau where indicated prior to discharge.
C. Bipolar disorder services will facilitate access to specialist Māori staff by:
Employing staff with knowledge/skills/expertise in te ao Māori/hauora Māori/mātauranga Māori (Māori worldview, Māori health, Māori knowledges) to facilitate Māori processes/practices/tikanga (customary values/practices) during provision of health care. Employ non-clinical staff to act as service kaitiaki (aid, guardian, guide) to assist whānau to understand and move through clinical processes. Develop/maintain a national network of iwi endorsed Tohunga/Taha Wairua practitioners (Māori expert/healer) and refer patients/whānau where indicated.
D. An expanded scope of BD services will resource/stabilise the mental health workforce to benefit Māori patients/whānau by:
Staff with specialist knowledge/skills/expertise/training and roles dedicated to relapse prevention/maintaining wellbeing. Specialist relapse prevention services for chronic/relapsing BD presentations. Increased capacity of clinical psychologists within mental health workforce.
E. Expand the therapeutic scope of inpatient BD care for Māori patients/whānau by:
Employing non-clinical staff to awhi/tautoko (support) Māori patients/orient them to person/place/time to minimise harmful interventions (i.e. seclusion). Employing non-clinical staff to act as service kaitiaki to explain purpose of inpatient admission and minimise the harmful use of legislation.

There is one thing that they should do. They say if he gets unwell to ring the crisis team, but when you ring, they say no you have to contact the police, go there, go here. You’re trying to get the help. It is hōhā.⁹ (W5)

Participants also described the need to expand the scope of services to minimise additional stress placed on Māori patients and their whānau during already stressful periods when they require mental health care. To minimise stress, participants identified that additional staff and service resources were required at multiple points when transitioning through BD care.

From a whānau perspective it would help if someone explained bipolar to us. What it means, how we can help, what services can do, who we can contact, who can help us to help them. We were never involved unless Mum involved us. (Services) never involved us. They should have. (W8)

Navigation-fatigue barriers and solutions were evident from the analysis of Māori patient and whānau experiences of the scope of BD services. Attributes of a redesigned health system to address navigation-fatigue and enhance the scope of services for Māori patients and whānau have been synthesised in Table 13.

Discussion

This paper identified three key themes from the expert critique of Māori patients with BD and their whānau regarding the contribution of structural features of the New Zealand mental health system to health equity. Themes involved the accessibility, delivery, and scope of the current health system, and described how structural design features influenced the quality, utility and availability of BD services for Māori patients and their whānau. Participants identified structural barriers in the existing design and potential changes to improve the accessibility, delivery and scope of BD services for Māori in New Zealand. This would involve redesigning the underlying structure to address four common sub-themes related to operational, environmental, staffing, and navigation points (information, transition, fatigue) to better meet the needs of Māori with BD.

Table 13. Navigation-fatigue sub-theme: barriers and solutions.

A. Fatigue will be prevented for Māori patients/whānau navigating BD care by:
Communication plans and resources to provide patients/whānau with information about BD, the purpose/scope of services/treatments and when/how to engage with them. Resources designed to reduce fear/stigma about BD and inform patients/whānau about wellbeing activities that enhance wellbeing/prevent relapse. Access to service kaitiaki to explain purpose/process of clinical assessment/contacts/interventions and debrief/review afterwards.
B. Whānau will receive support to manage BD care transitions to prevent fatigue by:
Assessing/reviewing whānau support needs at each transition point (i.e. crisis admissions, inpatient stays, transitions from hospital, GP managed care). Proactive referrals to services/social supports relevant to the age, stage of life/illness, and whānau circumstances of the patient. Where compulsory care (legislation) is indicated, collective whānau/service decision-making is made to protect individual patient-whānau relationships. Resourcing whānau support groups/meetings for whānau with loved ones with BD to meet/support each other.
C. An expanded scope of BD services for Māori patients/whānau will prevent fatigue and move from an illness-focus/symptom alleviation approach by:
Scheduling/delivering brief reviews with patients/whānau after discharge (via mobile/in-home/telehealth as requested). Adapting maintenance plans after reviews to inform GP managed care/prevent relapse/increase patient/whānau supports/re-engage services if required.

These findings expand on recent mental health research by detailing structural changes specifically aimed at improving the accessibility, delivery and scope of services for Māori patients with BD and their whānau (Kirmayer and Jarvis 2019; New Zealand Government 2018; Waitoki et al. 2014). The need for structural changes to address the processes that influence accessibility, delivery and scope of mental health care was also consistent with other Kaupapa Māori health research, where adapted frameworks highlighted the impact of systemic factors on differential Māori health outcomes (Dyall 2003; Hotu 2018; Penney, McCreanor, and Barnes 2006). This paper addresses an identified gap within existing mental health research by utilising a KMR methodology that positions Māori patients with BD and whānau as experts in highlighting necessary changes to the design of the mental health system (Haitana, Pitama, Cormack, et al. 2020; Haitana, Pitama, Crowe, et al. 2020; Palmer et al. 2019).

Strengths of this paper include the KMR design in a previously under researched area, and adaptation of a method to privilege the expertise of Māori and identify barriers and potential solutions to improve the structure and design of mental health services for BD in New Zealand. This paper also has limitations. Firstly, recruiting Māori patients and whānau through services may have limited participation to people with positive experiences, however, this did not appear to be reflected in interview data. In addition, if time had allowed, separate interviews with patients and whānau may have highlighted different critique between groups, however, the benefits of one interview were considered and aligned well with KMR principles (Haitana, Pitama, Cormack, et al. 2020).

This paper provides a health service user perspective about the impact of structural features of the health system on mental health outcomes and proposes changes to align with the needs of Māori patients with BD and their whānau. While structural changes to the New Zealand health system have been previously recommended, including a medication review framework co-designed with Māori, and targets to reduce rates of seclusion for Māori in inpatient mental health settings, changes have not been consistently implemented (Goodyear-Smith and Ashton 2019; Health Quality and Safety Commission New Zealand 2021; Hikaka et al. 2019; McLeod et al. 2017). Transformational change therefore requires a commitment to monitor and address institutional racism driving inequitable access to effective care for Māori with BD and their whānau in our health system (Goodyear-Smith and Ashton 2019; Hobbs et al. 2019). As New Zealand prepares for significant health system reform, a commitment to equity and implementation of previously recommended structural change is needed, along with ongoing evaluation and refinement of structural changes to ensure their efficacy for whānau Māori (Goodyear-Smith and Ashton 2019; Hobbs et al. 2019; New Zealand Government 2021).

Disclosure statement

No potential conflict of interest was reported by the author(s).

Additional information

Funding

This work was supported by the Health Research Council of New Zealand (HRC) of New Zealand under Rangahau Hauora Māori Grant [HRC 16/338] and published with the support of a Ngā Pae o te Māramatanga Publication Support Grant.

Notes

1 Legislation where mental health patients can be compelled to participate in assessment and treatment.

2 Mātauranga Māori in this context refers to Māori knowledges encapsulating Māori world views, perspectives and cultural practices and their relationship to health and wellbeing.

3 Maunga (mountain), awa (river), and whenua (land) in this context refers to significant tribal landmarks or locations where the patient feels a strong sense of connection. Landmarks also locate a person within their tribal group and alongside their ancestors.

4 In the context of this quote Māori kaupapa and tikanga relates to the inclusion of priorities, activities and customary practices in services that were of value to the Māori patient and enhanced wellbeing.

5 Poroaki (farewell) process in the context of this quote refers to the patient’s desire for staff to facilitate a formal discussion about the period of inpatient care with whānau at the point of discharge.

6 Kaumātua (older person, esteemed person) in the context of this quote refers to Māori community leaders and members of the patient’s extended whānau who were knowledgeable in Matauranga Māori and Māori health.

7 Hui (meeting) in this context involved a meeting arranged by kaumātua with health service officials after visiting the patient in hospital.

8 Pākehā in this context relates to non-Māori/Westernised worldviews and the health system.

9 Hōhā in the context of this quote involves feelings of frustration and exhaustion when trying to navigate service re-engagement.