Māori and Bipolar Disorder Research Project
Abstract
Bipolar disorder (BD) is a serious chronic mental health condition affecting a person's health and wellbeing throughout their life. Internationally, there has been limited research designed to inform knowledge about Indigenous peoples with BD, despite evidence of high levels of unmet health need in those communities due to their shared experience of marginalization through the process of colonization. In Aotearoa/New Zealand, non-Indigenous peoples - particularly the majority New Zealand European population - have greater access to higher quality healthcare and experience consistently lower exposure to health-compromising conditions. These advantages contribute to patterned health inequities, with Māori, the Indigenous peoples of Aotearoa, found to have among the highest lifetime prevalence of BD in national and world mental health surveys. This project used a Kaupapa Māori methodology to explore the health profile, needs, and systemic factors impacting Māori with BD.
Introduction
The MBDRP was a study designed to create knowledge based on identified health need. The project was initially conceived by Associate Professor Cameron Lacey, a Māori psychiatrist whose work at the University of Otago, Christchurch, includes academic research, teaching, and clinical practice with Māori patients with BD and their whānau (family/support network). Prior to the project, Cameron consulted colleagues nationally across three Te Whatu Ora sites: Canterbury/Waitaha, Hawke's Bay/Te Matau a Māui, and Northland/Te Tai Tokerau. From this, Cameron brought together a project team, recruiting Tracy Haitana as a Research Fellow. Sites were selected to ensure they were broadly representative of the range of services available to Māori with BD across Aotearoa, characterized by their differing rural and urban locality and composition of specialist mental health services, including the availability of Kaupapa Māori service provision. As a Research Fellow, Tracy maintained established partnerships between the project team and Te Whatu Ora sites, coordinating each phase of the project and leading the qualitative interview and analysis phase.
Who should benefit?
Māori is a collective term for Indigenous peoples of Aotearoa who affiliate with various tribal groups. Māori are the largest minority ethnic group in Aotearoa, comprising 17.1% of the national population. By comparison, the Māori population is relatively young, and growing. Geographically, most Māori live in the North in urban centres, although there are higher proportions of Māori in small localities where barriers to health service access are greater. Māori experience unfair, unequal, changeable health outcomes, reflected by persistent differences in life expectancy relative to non-Māori: current estimates indicate a difference in lifespan exceeding seven years. In Aotearoa, BD disproportionately impacts Māori relative to non-Māori in both hospitalization and survey data. Te Rau Hinengaro, a national mental health survey completed in 2006, found 8.3% of Māori met criteria for BD in their lifetime and 4.6% in the previous 12 months. This rate was considerably higher than non-Māori, non-Pacific participants’ 1.8% in the past 12 months.
After adjusting for sociodemographic factors, rates of BD remained significantly higher among Māori. Lifetime prevalence of BD for Māori was higher than any other reported in World Mental Health surveys, including comparisons to other Indigenous populations. Internationally, premature mortality is increased among people with BD, mainly due to chronic physical health issues. Our quantitative study found Māori with BD had a higher level of morbidity and higher risk of death from natural causes than non-Māori with the same diagnosis, indicating higher levels of unmet physical health need. Surprisingly, rates of medical and surgical hospitalization were not higher for Māori with BD relative to non-Māori, suggesting undertreatment may be a factor in mortality rates. Despite the inequities experienced by Māori with BD, few previous studies with sufficient sample size sought to investigate this. Prior to this project, the profile and health needs of Māori with BD in Aotearoa - including understanding the role of systemic, societal and life course factors on health outcomes - was essentially unknown. Mental health is an established priority health issue for Māori in Aotearoa, and for Indigenous peoples worldwide. The focus of this project may therefore have global utility in identifying and targeting unmet health needs for other Indigenous peoples with BD. This project has stimulated further research activity, including studies designed in partnership with the lived-experience community to investigate the extent, impact, and experiences on unmet physical health needs for people living with mental health and addiction issues.
Engagement
The MBDRP was forged through, and completely dependent on, the success of engagement activities and research partnership relationships, driven by the underlying principles of Kaupapa Māori Research (KMR) methodology. Engagement activities began before the research was funded and involved peer discussions between Cameron, other Māori psychiatrists, and colleagues working alongside Māori patients with BD and their whānau in healthcare. Initial discussions identified evidence gaps, information needs, and the anticipated impact of the research on health outcomes for Māori patients and whānau. These peer discussions informed the design of the research project, choice of methodology and methods, and selection of research sites in Christchurch, the Hawke’s Bay, and Northland. Once research funding was awarded, the project team completed site visits, facilitating meetings with key stakeholders including staff with lived-experience expertise in each region. Meetings were used to present the preliminary findings from the quantitative analysis, seek input from research partners about the planned approach to qualitative interviews and focus groups, and pilot the qualitative interview schedule with Māori patients with BD and their whānau.
All research activities have been completed, including successful recruitment and completion of qualitative interviews, key stakeholder focus groups, and analysis. All planned papers are either in draft or published. Dissemination of study findings tailored to participants is underway, including completion of a computer animation designed as an information resource for Māori patients with BD and their whānau.
Research
The research involved three phases designed specifically to address existing knowledge gaps. Phase 1 involved an analysis of the national mental health data set, identifying patterns of service use for BD for Māori to obtain a clearer profile of Māori needs relative to non-Māori as indicated by contacts with mental health services. Phase 2 used the findings from Phase 1 to develop an interview schedule designed to understand the experiences of Māori with BD and their whānau who had been engaged with mental health services, with analysis focusing specifically on identifying barriers and enablers within the organization and structure of healthcare and the impact on clinical care and health outcomes. Phase 3 prepared a synthesis of results from Phase 1 and 2, which were disseminated to key stakeholders involved in designing and delivering services to Māori with BD. This included a set of questions for stakeholders to discuss with colleagues ahead of scheduled focus group meetings. The MBDRP was designed iteratively through collaborative input with study sites and discussion with research collaborators and partners. A KMR methodology was chosen specifically to avoid deficit-framing, which contributes to negative stereotypes about Māori by emphasizing the presence of adverse health outcomes while ignoring the socio-historical context in which health inequities arise. KMR seeks to identify and explore the role of systemic factors in health outcomes and produce pragmatic solutions that are of benefit to the research community. The KMR methodology informed the phases of the study, to ensure that key stakeholders were central in having access to the results and proposing solutions to address barriers to equity for Māori patients with BD and their whānau. Returning to the study sites across the 5 year project also ensured key collaborators were able to assist with recruitment and sustained participation through high levels of continued project engagement.