Understanding the determinants of health for Māori living with chronic disease in Aotearoa New Zealand
Lynley Uerata
1 * , Nina Scott 2 , Jade Tamatea 3 4 , Amy Jones 1 , Polly Atatoa Carr 5 6 , Lynne Chepulis 7 , Ryan Paul 7 8 , Haylee Simon 1 , Ross Lawrenson 7
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Abstract
Aotearoa New Zealand has wide disparities in health outcomes between indigenous and non-indigenous groups, which are strongly associated with inequitable access to determinants of health by ethnicity. Experiences of health determinants culminate in higher rates of diabetes, asthma, kidney disease and other chronic diseases and worse outcomes for Māori.
This paper explores the relationships between health determinants and chronic disease from the perspectives of Māori patients and healthcare providers.
Using a Kaupapa Māori methodology and qualitative methods, six semi-structured focus groups with 21 Māori living with chronic disease and semi-structured consultations with 130 healthcare providers across the Waikato region were undertaken between 2021 and 2023.
Participants identified five key health determinants shaping the everyday experience and management of chronic disease, including employment, welfare support, income, access to information and racism. Access to economic resources had significant impacts. Those in situations of economic insecurity experienced significant complications to everyday disease management and had fewer resources to mediate their effects. Chronic disease also reduced access to economic resources through increased health costs, reduced earning power and the impacts of dealing with the welfare and health systems. Comparatively, stable access to economic resources, such as health insurance, enabled disease management.
Everyday experiences of health determinants are shaped considerably by economic circumstances. Claiming welfare support continues to be difficult for eligible participants, and welfare payment inadequate. The health system needs to re-design healthcare delivery so people with poor access to economic resources are actively supported to access health determinants.
Keywords: Aotearoa New Zealand, chronic disease, chronic disease management, determinants of health, economic [in]security, health service redesign, Kaupapa Māori, Māori, qualitative methods.
| WHAT GAP THIS FILLS |
| What is already known: The relationship between the determinants of health and health outcomes is well-researched both nationally and internationally but the determinants of health are not adequately acknowledged in health system design and delivery in Aotearoa New Zealand. Solutions that mitigate the negative impact of poor access to the determinants of health are often not concurrently explored. |
| What this study adds: This paper provides details on the significance of the determinants of health for Māori living with chronic disease, and how determinants shape the everyday experience and management of chronic disease. Evidence is provided about how determinants can be addressed at patient, whānau (family) and systems levels. |
Introduction
Access to determinants of health and wellbeing have significant impacts on the development, treatment and outcomes of chronic disease.1,2 Poverty and limited access to education, employment and housing are causative for adverse health outcomes.2,3 Access to protective factors, such as economic resources and timely access to health care, and protection from exposure to risk factors, such as racism, also drive the development and progression of chronic disease at global, community, family and individual levels.4 These determinants are also critical to understanding the pathway to inequitable ethnic health outcomes. The availability and distribution of the determinants of health are driven by national and international policy.2,3
Indigenous peoples typically experience differential exposure to determinants of health, which manifest in higher rates and poorer outcomes of chronic and acute disease compared to non-Indigenous peoples.4–7 In Aotearoa New Zealand (NZ), Māori (Indigenous people of NZ) experience marked inequity of all determinants of health, such as those measured in education, housing, economic and justice sectors,8 with the distribution of these determinants deeply rooted in historical and contemporary injustices beginning with the process of colonisation and systemic racism.4 The drivers of inequitable access to the determinants of health can also be amplified by the presence of chronic disease. In turn, Māori commonly have conditions that are affected by reduced access to the determinants of health,9,10 including cancer,11 diabetes,12 asthma,13 kidney disease14 and other conditions,15,16 and poorer outcomes compared to non-Māori.5–7 There are significant barriers to timely access to quality health care for Māori from early detection to treatment,17 and visits to a primary care provider come at a cost (approximately $15–$60). These inequities represent a systems failure.
Although the relationship between determinants of health and chronic disease health inequities are well documented, there is limited information in NZ describing how specific determinants shape the everyday experience of chronic disease from patient and provider perspectives. Thus, this paper explores health determinants and how they impact everyday disease management within the everyday lives of Māori patients living with chronic disease.
Methods
This Health Research Council-funded Collaboration Study (20/1178) developed a hauora (health) needs assessment and clinical support for Māori living with chronic disease to enable support pathways for the determinants of health. Four chronic diseases are the foci for this study: cardiovascular, respiratory and kidney diseases and diabetes, because Māori are overrepresented in the prevalence of these conditions and there are important inequities in mortality and morbidity outcomes compared to non-Māori.12,13,16,18,19 For example, 2018–2020 data show ischaemic heart disease mortality rates for Māori adults were more than twice non-Māori adults.19 Ethical approval was granted by the Health and Disability Ethics Committee (Ref: 21/NTB/148) and Waikato District Health Board Māori Research Review Committee.
Kaupapa Māori methodology is a way of undertaking research that centres Māori ways of doing, being and knowing, while recognising Māori experiences of colonisation and its ongoing effects.20,21 Led and undertaken by Māori, Kaupapa Māori research focuses on issues important to Māori and advances self-determination (tino rangatiratanga).20,21 Data were collected from Māori living with chronic disease using a group conversational approach and from healthcare providers in both face-to-face and virtual consultations conducted in a variety of contexts (Table 1). Participants were recruited using three methods: established links with Māori health providers and community groups at the frontline of chronic disease management; prospective identification of staff and patient participants from the four clinical teams in the local tertiary hospital; and digital and physical pānui (posters) distributed through these departments and groups. Health New Zealand Waikato is a government agency mandated to manage the provision of healthcare services in the Waikato region, an approximate area of 21,000 km2 across the middle of the North Island of NZ.22
| Type of organisation | Number of participants | Type of role | Number of participants | |
|---|---|---|---|---|
| Hospital | 77 | Allied Health | 56 | |
| Community | 17 | Clinical | 44 | |
| Māori primary care/primary care | 16/4 | Management/leadership | 14 | |
| University | 8 | Mental health | 8 | |
| Māori/Pacific support services | 5 | Research | 6 | |
| Government | 3 | Culture | 2 | |
| Total | 130 | 130 |
Consultations with providers explored the health determinants and systemic issues affecting patients and service provision between 2021 and 2023. Providers were asked about three main topics: (1) the provider’s role and service; (2) the provider’s understanding of the health determinants impacting patient health; and (3) pathways to access the service/s. Consultations were undertaken by the research officer, attended sometimes by other team members because of subject expertise and relationships with providers. The information gained was written down in note form during each consultation, then expanded afterward and discussed with the research team. Audio-recording was used when the information sought was complex.
Six semi-structured focus groups with 21 Māori patients with chronic disease were undertaken (Table 2). Comprising two to six people, focus groups explored the health determinants impacting patients’ everyday lives. Examples of questions include: What enables you to be well and healthy? What hinders your health and wellbeing? Questions were used flexibly to accommodate what participants wanted to talk about, an approach which Rubin and Rubin call responsive interviewing.23 Focus groups were audio-recorded and took between 90 and 120 min. All participants were engaged using Māori principles and practices about human interaction, such as manaaki ki te tangata (care and respect for others).21
| Female/male | Age range | Rural and regional/urban | Long-term condition | Comorbidities | ||
|---|---|---|---|---|---|---|
| Focus groups | 12/9 | 40–82 | 8/13 | CVD 5 | 10 (48%) | |
| Lung disease 6 | ||||||
| CKD 4 | ||||||
| Diabetes 6 |
Notes and transcriptions were analysed by the research officer using thematic analysis and a Kaupapa Māori lens,24 then discussed and developed with the research team comprising experienced Māori researchers and clinicians. While patient perspectives have been centred and elevated in the results, provider perspectives add contextual details to increase understanding.
Results
Participants identified five key determinants shaping everyday disease management, including employment, welfare support, income, access to information and racism. While there is diversity and complexity in patients’ experiences, analysis of participants’ perspectives revealed the significance of access to economic resources shaping everyday experiences and chronic disease management. People living in situations of economic insecurity faced more determinants of health negatively affecting them.
Employment
Participants were at different stages of their employment trajectories. While half of patients were retired and received Superannuation (a government weekly pension paid to people 65 years and older), the remaining patients were employed in logistics, education and caring roles. Some Superannuation recipients continued to work because of the benefits work provides and living costs. Maintaining employment was described as a challenge in the context of gradual physical decline due to chronic disease, forcing some to withdraw from employment permanently or intermittently.
Employed participants, especially those with care responsibilities to tamariki (children) and kaumātua (elders), stressed an absence of time as a significant determinant hindering self-care and access to the health system.
One of the biggest things is time constraints: finding the time to get to the doctor or … pharmacist. I’ve missed a few times to get my repeat prescriptions; … [finding] time to try and take care of myself because I’m so busy. I work full-time … I’ve got two teenage daughters … You got to pay your bills. (Female, 44)
Welfare support
Shifting from paid wages to welfare payments was described as an inevitable effect of chronicity and significantly reduced the level of individual, whānau and household income. This shift was difficult for those with a history of well-paid employment.25 Welfare payments became the only source of income for many.25,26
I had worked right up to the day I couldn’t anymore and now I’m on the begging line and it’s humbling. (Female, 65)
Many eligible patients reported difficulties accessing welfare support, which emerged from the vast and complex nature of the welfare system, limited access to information about welfare supports and poor access to advocacy.25–27 Most patients did not know what types of support they were entitled to and how to access support, which was linked to the non-disclosure practices used by case managers and enabled by government and organisational policies and processes.25,26
We obviously need help [getting welfare support] but we just don’t know where to start. (Male, 52)
I have no idea if, you know, I’m qualified for any [welfare support] … Where do you go? Who do you talk to? (Female, 64)
There is [support] but [case managers] don’t tell you. (Female, 40)
A shortage of social workers and limited access to information about welfare support meant many patients were left to navigate the welfare system on their own. A provider at our local tertiary hospital has been told not to support patients in their interactions with the welfare system because the 90-min wait times were impractical for contacting Work and Income New Zealand (WINZ), a government agency mandated to provide income, housing and employment support.
The nurses don’t know [about welfare support]. Only the social workers know the ins-and-outs and then we can’t always see the social worker. (Female, 40)
During data collection, the WINZ website advised phoning to ask questions about some forms of welfare support. However, after waiting for significant periods of time for WINZ to answer the phone, participants reported they were told to complete online and/or paper application forms.
You’ve got to wait for hours on the phone for them to say, “Go fill out the form”, and then there’s all this paperwork. (Female, 40)
Welfare recipients are subject to regular assessment overseen by a case manager.25 However, patients felt the assessment questions failed to acknowledge the stage and permanence of their condition.
It’s renal failure … Please stop asking me the same dumb questions … Read my notes. This is for life … We’ve always got to prove that we’re actually sick. (Female, 40)
I always make sure I got my doctor’s certificate to show them. (Male, 58)
Long hospital stays can occur for people with chronic disease. However, because welfare supports are patient-focused, patients felt stuck between treatment and whānau needs.
They’ve finally called me up for a kidney [transplant] and that might be a good three months [in hospital]. I’ve got to have support for the first … couple of weeks and that’ll be my wife. What about our youngest daughter [who lives with a disability]? I asked [WINZ] about that, and they said, “You’re just gonna have to ring the whānau”… That plays on my mind. “What happens to my family while I’m out of the picture?” (Male, 52)
Because case managers are enabled by government and organisational policies and processes to exercise discretion,26 patients reported being denied forms of welfare support they were eligible for.
When I was on the benefit, I got sick of getting told, “No” … [I was denied] financial assistance to get to different hospitals and … my teeth fell out because of the diabetes, and I was told a straight, “No. No. There’s no funding”. (Male, 52)
Because of the difficulties described here and elsewhere,25–31 providers mentioned that many patients gave up trying to access welfare support and others were receiving the wrong type and level of support.
Income
Poor access to and being without welfare support lowered the level of income and had many effects on everyday disease management, including accessing medication, health care, health insurance, travel and transport, food and stable housing.
Low-income impacted a patient’s ability to access medication, particularly the newer medication agents (dulaglutide and empagliflozin) that are available under special authority.32 Current eligibility criteria mean patients can only access one funded medication at a time, although both might be clinically indicated.32
Financially, [living with diabetes] is also a struggle … I worked all my life and then going on the benefit, oh it just halved everything. So, of course when I got medications, [I bought] half of everything until I could get the other half … It’s $49 a pop. When you’re on the benefit, you can’t afford [medication] even though it’s getting subsidised and I didn’t want to have a bill at the chemist. (Female, 65)
Low-income constrained access to health care. Podiatry, dental and eye services were highlighted as very difficult to access.
Eye health is an issue for me … You’re on the waiting list. The problem with that is the waiting list is getting longer and longer and in the meantime the issue is getting worse … In the end, you have to [use] your own financial means … [Surgery for glaucoma is] about 4000 dollars. (Male, 83)
Low-income impeded access to health insurance and, in turn, timely access to many forms of health care.
I tried getting medical insurance but the premiums are just way too high and that was when I was working. There’s no way I could afford that now. It would be taking most of my monthly wages. (Female, 65)
Low-income constrained the ability to meet the costs associated with owning and using a vehicle, making it difficult to access the health system.
The cost in travel getting to certain places [is a problem]. (Female, 65)
Losing the ability to drive through loss of vision had significant emotional, economic, cultural and social effects for patients. Some relied on whānau members and their transport and/or sought other ways to get to the health system.
The hardest thing for me was not being able to drive. (Female, 61)
Low-income and food costs made it difficult to purchase enough healthy or condition-appropriate food, especially for large families.
The costs of food are going up now … Diabetic sugar, it’s too expensive … When you’re a beneficiary, like I am, it’s so expensive. You can’t afford to get meat. (Female, 65)
Low-income made it difficult to find suitable and/or appropriate long-term housing for renting patients. The shortage of healthy housing forced some to live with others.
There is such a shortage of good homes to put people in, families and stuff. For the older generations …, some of us are living with families. They don’t want to be. They’ve got no choice. (Female, 65)
Participants described the specific challenge of finding housing suitable for in-home dialysis for renting patients living with renal disease. Not all houses are designed to accommodate dialysis equipment, and renters must gain their landlord’s permission. Finding housing was complicated further by the shortage of quality rental housing and the number of household members. Housing became the most critical determinant for renters at times.
If [the landlord] say, “No”, then you’re gonna have to go find another house … That’s a lot of work … That was one of my barriers when I first come out of [dialysis] training. (Female, 40)
Trying to find a house that’s suitable for dialysis [is difficult]. At the moment I live in a two-story house and trying to lug those boxes up those stairs is difficult. They are not light. (Male, 52)
Comparatively, patients in secure economic situations possessed economic resources that enabled access to the health system, such as health insurance and stable housing through home ownership.
Housing has never been an issue for [my family] … We also have medical insurance and we’ve had it for quite a few years and that’s helped greatly … We save heaps on visits to the GP. (Male, 71)
Access to information
Participants reported poor access to information in many health contexts. Patients learned about health resources haphazardly, rather than being told by their provider.
You had to find out what services were available and you’re not told that … I only found that out by mistake while I was sitting at the bus stop waiting for my Uber ride. This old lady next to me says, “Oh, who are you waiting for? … You can get one of these St John Ambulances to take you home” … She gave me the number and everything. (Female, 65)
I didn’t even know about Trulicity [dulaglutide] until my sister mentioned it … I mentioned it to the clinic, and they said, “Oh yes. We’re getting round to that”. (Female, 64)
Without access to affordable health insurance, participants hoped tribal support might be available. Despite there being health insurance and support for health costs available through some tribal organisations, there was low awareness and uptake of these among participants. There was also a misconception that living outside their tribal territories meant they could not draw on tribal support.
I could look at [iwi support] but … if you don’t know where to look, you know, where do you start? [I] don’t know the questions to ask … I’m not from this area … I don’t think I’m entitled to anything. (Female, 65)
Racism
While there are examples of institutional racism in previous themes, some patients experienced racism in other health contexts. One participant, who had previously worked in health insurance, reported racist practices hindering access to health insurance for Māori and other ethnic groups.
The only way Māori get good health … insurance is through a group. Over the years, it was always difficult to get health insurance for ethnic groups. (Male, 70)
Another participant mentioned their providers targeted Māori food as ‘bad’, without understanding its benefits.
[My dietitian] asked the wrong questions … “Do you eat boil ups?”… And I’m going, “I’m a Māori. Yes … Why do you ask?” “Oh well, you shouldn’t eat too much of that”… I said, “Puha and watercress have heaps of iron”. (Male, 52)
Discussion
In this paper we describe how determinants of health shape everyday disease management for Māori. While contemporary economic experiences are driven by historical processes beginning with colonisation, particularly the taking of land and destruction of productive assets,25,26 our findings affirm both national and international research that everyday disease management is shaped by economic circumstances,25–31 and coloured by access to information, racism, care responsibilities and other factors.4,25,30,31 Chronic disease also reduced access to economic resources through increased health costs, reduced earning power and the impacts of dealing with the welfare and health systems. This is part of the vicious cycle of contemporary Māori experiences of health, economic insecurity and interacting determinants of health, which are rarely reflected in the way government agencies operate.25–27
Patients with a greater level of economic resources contended with fewer barriers and possessed resources, such as stable housing and health insurance, which enabled disease management and reduced primary care appointment costs. Patients contending with economic insecurity experienced significant complications to everyday disease management and had fewer resources to mediate their effects.25–27,30,31 Poor access to economic resources blocked and constrained timely access to health resources and the health system, including primary care, often leading to detrimental delays to testing and care.25,26,30 While access to welfare support is critical for people with chronic disease, the process of accessing appropriate welfare support continues to be difficult and the level of welfare payment inadequate.25–28,30,31 Experiences of the welfare system are unlikely to improve, as the National-led Coalition Government (2023-) applies sanctions more strictly, increases the obligations of welfare recipients and reduces the number of welfare recipients.33,34 Primary care is a pathway to health care that is inaccessible for some, and significant primary care needs remain unmet for Māori.35 Primary care providers must help patients access all the health, income and other resources needed, especially those experiencing economic insecurity.
Participants have poor interactions with the many faces of the Crown as one collective experience. They face a set of colonial government structures and systems that use varying levels of blame and penalty, and eligibility criteria, processes and practices do not support access.26,30 Each government agency focuses only on their specific objectives rather than seeing and supporting people’s situations and needs holistically. Services are rarely delivered by trusted places or faces, and people are pushed on without support or with limited support if enough boxes are ticked. Transparency about what people are entitled to is lacking, and patients are forced to navigate and assert their own way to support.31 Government agencies must redesign service delivery to properly consider the nature and effects of the vicious cycle faced by people living with chronic disease and actively support access to all the required determinants of health, especially economic security (ie flexible employment arrangements with a living wage, rent-to-own opportunities), to increase access to preventative and other health appointments, testing and treatment. The most successful and cost-effective interventions are enabled early in one’s life cycle, culturally informed, strengths-based and couched within an ongoing partnership with Māori and community.36–41
This paper is limited to four conditions experienced by Māori and does not discuss the accumulation of advantage and disadvantage, nor the complex interaction of causes within participants’ lifetimes and across generations. However, readers get an understanding of the determinants of health for Māori with chronic disease and the issues they face, with applicability to people with other conditions.
Conclusion
Patients experiencing economic insecurity struggle to gain stable access to determinants of health and are pushed around by Crown agencies, which provide little or no help. Primary care providers must support patients to access all the health, income and other resources needed. Supporting access to economic security must be included in policies and programmes to improve health outcomes and achieve equity.
Data availability
The data used to generate the results in the paper are only available to research team members.
Declaration of funding
Our research team thanks the Health Research Council [20/1178] for funding this work.
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