Abstract
The philosophical assumptions that underpin the way in which health states are valued within economic measures of health are rarely made explicit and fail to capture the experiences of Indigenous peoples. Within a Kaupapa Māori theoretical paradigm, in-depth interviews were conducted with six Māori key informants who had cared for whānau (family) members through illness to give voice to dimensions of health and illness that Western economic measures of health fail to capture. An Indigenous measure of health needs to consider the individual within the context of the collective and the environment that they are connected to. Economic measures of health are widely used to inform decisions about resource allocation that have significant impacts on Indigenous health outcomes. This article sets out to start a conversation around what an Indigenous measure of health might look like and how it might value key dimensions of health.
Keywords
Introduction
The philosophical assumptions that underpin the way in which health states are valued within an economic context of health are rarely made explicit (Menzel et al., 1999). When they are discussed, they are more often than not located within Western philosophical constructs such as welfare economics and utilitarianism (Menzel et al., 1999). These philosophical positions view health in very different ways to Indigenous understandings of health and illness (Mills, Reid, & Vaithianathan, 2012), and this creates tension when measuring health outcomes and using these measures to make policy decisions.
Within the context of this discussion, the term value is used to denote a health state and its desirability (or lack of desirability) in a way that allows for comparisons to be made between different health states (Gold, Stevenson, & Fryback, 2002). The way in which a health state is valued is determined by the worldview of the person or people who are assigning the value. This is a key area of contention for Indigenous peoples as Indigenous worldviews are marginalised within settler societies (Smith, 2012).
This article notes some of the key philosophical assumptions that underpin economic measures of health currently used in economic evaluations and discusses how these philosophical positions differ to Māori worldviews. It then presents research findings from a qualitative scoping study that explored the lived experience of Māori participants caring for whānau (family) members through illness. Through these interviews, participants gave voice to dimensions of health and illness that Western economic measures of health fail to capture. This article sets out to start a conversation around what an Indigenous measure of health might look like and how it might value key dimensions of health.
Background
Health-related quality of life measures such as health-adjusted life years (HALYs), quality-adjusted life years (QALYs) and disability-adjusted life years (DALYs) are considered important tools for guiding decisions about resource allocation and quantifying the burden of disease, yet these measures fail to capture the experiences of Indigenous peoples (Angell, Muhunthan, Irving, Eades, & Jan, 2014). The values that inform these measures and the philosophical assumptions that underpin them are rarely made explicit, even though they are underpinned by Western philosophical constructs such as welfare economics and utilitarianism.
In brief, welfare economics takes the position that governments should act in such a way as to maximise aggregate benefit for their populations while utilitarianism believes that social policy should achieve the greatest good for the greatest number of people (Gold et al., 2002; Harris, 1999; Menzel et al., 1999). Within the limited resources of the welfare state, measures of health are seen as useful tools to help make decisions that will optimise the use of social goods and deliver the greatest good to the greatest number of people (Gold et al., 2002).
Even within the health economics literature, the philosophical assumptions underpinning measures of health have been challenged. For example, critics of measures of health outcomes have argued that these measures were designed to inform resource allocation within a framework of utilitarianism that can discriminate against certain population groups (Gold et al., 2002; Lockwood, 1988). In particular, they are insensitive to issues of distributive justice and discriminate against people within society who are already at a health or social disadvantage (Williams & Cookson, 2000). They can, therefore, perpetuate health inequities between Indigenous peoples and non-Indigenous populations and reinforce privilege within settler societies.
There are a number of other assumptions that underpin Western economic measures of health that do not align with Māori worldviews. Although they are often used to compare interventions at a population level, the measures themselves focus on individuals and the potential for improving health outcomes for an individual (Mills et al., 2012). This focus on the individual contrasts with Māori concepts of identity which focus on the collective, placing the individual within their whānau (family), hapū (wider family) and iwi (tribe).
Māori might also challenge the way in which health states or diseases are valued within these measures. For example, Western measures of health usually favour younger adult patients over older patients—within the literature this is referred to as the “fair innings” argument (Harris, 1999). However, the assumption that younger people gain greater value from health interventions than older people runs counter to Māori concepts of ageing and undermines value that kaumātua (Māori elders) have as leaders and teachers within their whānau, hapū and iwi (Durie, 1999).
People with more than one health condition or illness are also at a disadvantage within these measures of health even when they may greatly benefit from an intervention. For example, when calculating DALYs, there is no ability to simultaneously consider multiple illnesses within the same individual (Gold et al., 2002). This disadvantages Māori patients who have higher rates of co-morbidities than non-Māori patients (McLeod, Blakely, Kvizhinadze, & Harris, 2014).
Research methods
This research was situated within a Kaupapa Māori theoretical paradigm that prioritised a Māori worldview and recognised the complexity of Māori historical and contemporary realities. Our Kaupapa Māori paradigm purposively acknowledges and challenges the power dynamics that have created, and maintains the unequal position of Māori within our society through the processes of colonisation. This includes the ways in which the unequal distribution of the social determinants of health and unequal access to and through health and social services impact on Māori health outcomes.
This study used qualitative research methods to explore the lived experience of Māori key informants caring for whānau members through illness. Through these interviews, participants gave voice to dimensions of health and illness that Western economic measures of health fail to capture. This research was conducted in parallel with a quantitative cost-of-illness study that examined the cost of health inequities between Māori and non-Māori adults in Aotearoa New Zealand (Reid et al., 2017).
In the qualitative study, six in-depth interviews were conducted with Māori individuals who had experienced illness or cared for whānau experiencing long-term or terminal illnesses. All of the participants were female and four of the participants were Pakeke (Māori adults between 25 and 55 years of age) and two were kaumātua (Māori elders over the age of 55). Participants came from different hapū and iwi (family groups and tribes) across Aotearoa New Zealand, and three of the six participants worked as health or social science researchers. All of the participants had cared for close whānau members through long-term and terminal illnesses, and the kaumātua who were interviewed had also experienced illnesses requiring care from their own whānau.
The in-depth interviews were able to explore the lived experiences of participants in a way that other research methods, such as focus groups, are unable to and provided rich data that convey the stories that were not captured within the quantitative analysis of the parallel cost-of-illness study.
Interviews followed an interview schedule developed by the research team and were conducted either in-person at a location that was convenient for the participant or over the phone. Participants were encouraged to share their experiences of caring for whānau members through illness and then reflect on how aspects of these experiences might be valued within an Indigenous economic measure. Although none of the participants had a health economics background, they were all able to consider the impact of these experiences of illness on their own lives and the lives of their whānau. Building on these discussions, the interviewer was able to develop a conversation with participants around how these impacts might be valued within an economic measure that was underpinned by Māori values.
Participants were provided with a koha (gift) of vouchers for their participation. The interviews were between an hour and 2 hours in duration and were recorded with consent and transcribed verbatim. Participants were given the opportunity to review their transcripts before analysis. The interview transcripts were managed using NVivo software and analysed by the researcher who conducted the interviews using general thematic analysis. This thematic analysis was informed by our Kaupapa Māori paradigm, and the coding of interview data and development of themes were peer reviewed by another Māori researcher from the wider research team.
Ethical approval for the qualitative study was granted by the University of Auckland Human Participants Ethics Committee (UAHPEC/020655).
Results
Māori perspectives on health and illness
All of the participants viewed health as being more than just physical health. They talked about health as encompassing spiritual and emotional dimensions of their wellbeing: It encompasses more than just the physical, but there’s spiritual, and the impacts that it has on all of those people that are affected through that one person. (Rua)
Within this understanding of health and wellbeing, the health of the individual depended upon their relationships with their whānau, and the health of the individual was located within a collective construct of the health and wellbeing of the whānau: For me, a Māori worldview of health and wellbeing is understanding that it’s the health and wellbeing of the individual, it’s the health and wellbeing of the whānau. It’s understanding the relationship between the individual and whānau in terms of health and wellbeing. (Toru)
Within this worldview, a state of health and wellbeing requires each of these dimensions to be realised and together they contribute to the health and wellbeing of the individual and their whānau: To me, health incorporates lots of things . . . so all those things, spirituality, physical health, mental health, family health, I think are equal in Māoritanga. But just for that kind of thing helped my family, or me, to be a much healthier person, all those things are okay, but if ones out then the rest is out. (Whā)
Participants also talked about the connection between their health and wellbeing and that of the physical environment that they were connected to. One of the participants emphasised that as tangata whenua (people of the land), our health and wellbeing is intrinsically connected to the health and wellbeing of the land and waters that sustain us: But also understanding the relationship between the health and wellbeing of ourselves as people and the health and wellbeing of our lands, of our rivers, of our oceans, of our mountains, of all of the environment. So, I think there are definite links between the health and wellbeing of people and the health and wellbeing of our environment. (Toru)
In contrast to this understanding of health and wellbeing, participants viewed illness as an imbalance in the dimensions of health and wellbeing: I think illness and being unwell is about an imbalance, and all of those things that contribute to our health and wellbeing. So, illness, or unwellness, occurs when there’s an imbalance either in the environment that’s impacting on the person or the, their connection to, their spirituality is, is not strong, for example, that will impact on somebody’s illness, somebody’s wellbeing. And mean that they have a level of unwellness or illness, yeah. So, I think, I think illness is, illness and being unwell, it’s basically an imbalance somewhere, whether it’s with their physical, emotional, spiritual or otherwise, levels of being, yeah. (Toru)
Participants also talked about the way in which illness and the experience of illness limited their ability to participate fully in areas of their everyday life: I would describe illness as, as something when you are not the, it’s something that, what’s the word, limits your everyday life. (Whā)
When asked how Māori perspectives on health and illness differed to Western perspectives of health and illness, participants described Western perspectives as narrowly focusing on the individual and the illness under investigation: Their’s is more narrow focused, so on one person, on the disease, whether it’s one disease or one condition. And it’s honing in on that one person and that one specific medical issue. And it’s not kind of seeing all the other things that impact on that, that could enhance it or inhibit it. (Tahi)
By focusing on the symptoms of an illness, the Western medical model was limited in its ability to address underlying causes of illness or complex health needs: it doesn’t look for a cause, it just treats symptoms . . . I think Māori look for what, or Indigenous cultures, look for the cause more than they just cover up the symptoms. (Rima)
Value of whānau support
All of the participants discussed the health and wellbeing of the individual within the context of the health and wellbeing of the whānau. During times of illness, the whānau was able to come together, often over long distances across the country and even from overseas, to provide support and care for whānau members while in hospital and for their caregivers as well. All of the participants viewed this whānau support as an essential element of their ability to provide care and to align the dimensions of health and wellbeing that became imbalanced during the experience of illness or caring for a whānau member through illness: We were lucky though, I mean, all the family have dropped off meals and all that kind of thing, but, I mean, I can imagine how this could be so draining if it’s dragged out for a long time without that support. (Whā)
The value of whānau support was also discussed as a healing component of coping with illness, and there was an emotional and spiritual dimension to the care they were able to give from their presence during these difficult times: Grandparents bring such a healing component. I didn’t realise that, but when my mum was there it brought me calmness. (Tahi)
Financial impact of illness
The financial, the economic impacts are huge especially if your child’s sick over an extensive period of time. (Tahi)
An important parameter in measuring and valuing illness that is captured within current economic measures of health are the financial costs of illness. However, these tend to focus on the direct costs of illness within the health system while indirect costs that are covered by individuals and their whānau are much more difficult to estimate and are given much less attention (Ministry of Health, 2009). Despite being difficult to measure, this was identified as very important by participants: But the economic impacts, there are things that are hidden . . . there’s accommodation, there’s travel, parking is a huge expense. Everyone moans about the parking. (Tahi)
Participants also talked about the challenges of accessing financial support for these out-of-pocket expenses when financial assistance was provided within some health services but not with others: I mean there’s a simple change for obvious things like parking, when you’re at Starship Hospital it is incredibly expensive. And when you’re in, what’s it called, when you’re in the ward, for example, you can get discounted parking chits, but when you’re doing your regular visits to outpatients you can’t, so, you know, that will be anywhere up to, up with $15 a time. When you’ve got a child with two chronic diseases you potentially have two visits every three months, or whatever. (Toru)
Māori whānau are more likely to need to travel further for hospital care than non-Māori New Zealanders. A higher proportion of Māori live in rural areas in Aotearoa, and even when they live in urban centres they are more likely to live in outer suburbs. They need to travel long distances to provide care and support for their whānau while in hospital or to attend out-patient appointments created additional financial costs for these whānau: I ended up using all of my money to get all of my family to Auckland. (Rua)
For participants who did live close to a main urban centre hospital, there were still additional financial costs involved in hosting whānau members who came to provide help and support from out of town or even from out of the country: When hospital care or medical care extends over a long period of time you have to draw on other resources you just can’t do it by yourself. Especially if you need to pay the mortgage, get back to work. And so we do rely on other family members more who do it at their own cost or I had to put petrol in their car. (Tahi)
There was also a financial impact on the household income for participants as caring for a sick child required participants to take time off work and this was often unpaid leave: So, well, obviously one of us had to take time off work straight away, so it was me. I don’t have any sick leave left or any kind of annuals or nothing, so we didn’t get, like, that whole week’s pay. And actually, no actually, we haven’t got, like, three week’s pay, I’ve been off for nearly three weeks now . . . so, that’s really hard financially, especially because we’ve got, like, four other kids at home, just the usual bills too. (Whā)
Once their whānau had returned home from their care in hospital, participants highlighted that there were additional financial costs involved in providing ongoing care at home: And then there’s the other economic implications. Even when we go home, I mean after cancer you need to keep him warm so your power bill goes up. Sometimes you need equipment that takes more power or when we went home we needed things like a rail up and it took a year for them to come and do a rail. So we just bought, we just bought one we got one put up so we could use it to get down the steps safely. So there’s those kind of impacts as well. (Tahi)
And this care at home required participants to continue to take time off work or find other whānau members who could provide care when they returned to work. This was one area that participants highlighted the benefit of having strong whānau networks to provide support through the experience of illness: Now she can’t go to school ‘til she has her next scan which is in another six weeks, so obviously someone has to watch her at home while we go to work. So, we’re fortunate that she has two grandmothers that are gonna tag team being here with her throughout the week. If we didn’t have them we’d be stuffed, financially, I’d have to take six weeks off work. (Whā)
Social impact of illness
Many of the participants had cared for whānau members through long-term illnesses, and this had a significant social impact on them and their whānau. Participants talked about the challenges in providing care for whānau who were unwell and the impact that this had on their own health and wellbeing: There’s this wearing down that happens and you lose a bit of confidence, so socially you don’t feel as connected, you don’t feel like you wanna go out. (Tahi)
For participants who were parents caring for a child who was unwell, there were ongoing challenges in ensuring that their child was able to participate in social activities within their school and social networks: You can’t be like other, you just can’t be like other parents and send your kids off, you know, without, and know that they’ll be okay with other family because it’s, or with other, you know, parents being the parent helpers. You always have to be the parent helper, you just always have to be there because you can’t, you can’t expect other parents to know the signs or to know the treatment. (Toru)
Whānau prioritised care for their child who was unwell, and this limited their ability to leave their home and engage in social activities as a whānau: So socially that, I suppose that’s a burden on the family, so we really have to decide who’s gonna go and what are we gonna go to. And coz she gets tired really fast, so it’s like, a lot of things we would probably opt out of or one of us will just stay home. So, it won’t be a lot of family outings for a while, unless they’re very short ones. (Whā)
Spiritual impact of illness
All of the participants talked about spirituality as an important dimension of health and wellbeing. For some of the participants, they were able to draw upon spiritual practices like karakia (prayer) and waiata (song) during difficult times, and this helped their whānau cope with the experience of illness: I mean, very, very early on, when she was really young and her, her health needs were incredibly high and there were some scary dangerous moments, you know, karakia and waiata and chant and all of those things we drew on. And I drew on others who had greater knowledge of that to, to help me to carry that side. And to help me to be spiritually strong in order to, to be able to share that spiritual strength with my girl, who at the time was, you know, six months or 12 months old. (Toru)
Participants also talked about the benefits that these spiritual practices had on other families at the hospital during this time. Families who were not Māori could see the peace that these traditional practices were able to provide and engaged with them when they took place on the ward: But even the impact that that had on all the other families that were up there, and you know, Dad was always there, seven in the morning we’d have our own little quiet waiata (song) in his room following the karakia. And I guess the interest grew across the ward, and it wasn’t just with Māori and Pasifika families, it ended up being any family that was keen. And they all wanted to be part and parcel of the karakia. So, we had karakia six thirty in the morning and six thirty at night, so Dad could do it at seven o’clock with everyone else downstairs. (Rua)
Participants also acknowledged the positive spiritual impact of their experience with illness provided them with. One participant talked about how this experience had helped her to value her time with her whānau: Spiritually it changed me and then, I don’t know if it’s spiritual, but it made me value my family more because of the risk that, of one dying basically. But it also brought me closer in some respects and made me really value family life, made me really look at life’s too short to be unhappy. (Tahi)
Like the social impact of illness, capturing the spiritual impact of illness within an Indigenous measure of health will be challenging. However, the way in which participants talked about spirituality emphasises its importance within a Māori understanding of health and wellbeing.
Indigenous conceptualising of health and illness
Participants were asked to describe what they thought an Indigenous measure of health might look like and all of them responded to this question by talking about whānau and the need to take a collective approach to health and illness rather than focusing on the individual who is unwell: Whānau. I mean even my Pākehā friends who don’t have support, when they used to see how much whānau would come up and see our family, they wanted that and realised that there was something in it. (Tahi)
Within a Māori worldview, it is our relationships that connect us together and provide us with strength, during our everyday lived experience but especially during challenging times such as illness or death. This interconnected dimension of relationships is one of the key areas that an Indigenous measure of health and illness would differ to the current measures of health and illness that have been developed from Western philosophical assumptions: Relationships come first, connection comes first. Couldn’t do what we do without that. (Ono)
This wider conceptualisation of health and illness requires a measure that considers the wellbeing and care of the whānau who have come together to support the individual through their experience of illness: Providing that whanaungatanga to not just the person who’s sick but also to those who are looking after the person who’s sick. (Rima)
One of the participants stated that an Indigenous measure of health and illness should consider dimensions of quality and time: I think something around quality and time. So the quality that whānau give towards the care . . . . What they will do to be part of that process. The measurement is what they will do . . . time is the time spent with the person. So how, how much, what will you get, what would it take for you to get there and be with this person and the time. They’ll take time off work, they’ll fly from Australia, take time out from their busy lifestyles to be with this person to give them quality time, emotional support, whatever as a whānau. (Tahi)
Another participant expressed concern about quantifying and measuring aspects of Te Ao Māori (the Māori world). They emphasised that relationships and connections between people were what were important: some things it’s inappropriate to measure and if it starts modelling that economic model then okay . . . relationships come first, connection comes first. (Ono)
Discussion
The economic measures of health that are currently used to value and compare health states within Aotearoa New Zealand are underpinned by Western values and philosophical assumptions that provide a narrow conceptualisation of health that does not align with Māori values or worldviews. This is important as the current process for developing policy, allocating resources and determining what services are provided within our health system disadvantage Māori and marginalise Māori values. The themes that arose in this research provide a number of ideas for consideration as we move towards developing an Indigenous measure of health.
The strongest theme that arose from the interviews was the need to capture a much broader understanding of health and wellbeing than the current Western measures of health allowed for. An Indigenous measure of health would need to encompass the physical, emotional and spiritual dimensions of both the individual and the collective. For the participants in this research, health and wellbeing of the individual relied on the health and wellbeing of the whānau. This broader conceptualisation of health and wellbeing has been discussed by Māori researchers for decades (Cram, Smith, & Johnstone, 2003; Durie, 2004), and although the concept of hauora (wellbeing) is widely used within the New Zealand health system, this is not reflected within the measures of health that are currently used.
The use of time as a unit of measure arose as a theme for further consideration. Time can be quantified in minutes and hours and then used to measure and compare different health states. This could provide an alternative measurement unit to the current practice of using dollars in economic measures of health while also challenging the hegemonic position of neo-liberal capitalism within our health system. Within cost of illness studies, time is often considered when calculating both direct and indirect costs (e.g. the time of health professionals in providing care and lost productivity as a result of illness for the individual and informal carers), but this time is then quantified as dollars (Ministry of Health, 2005, 2009).
Time use surveys have been used to capture the number of hours devoted to certain tasks within a specified period of time, and this has a number of advantages as a unit of measurement (Strazdins, Welsh, Korda, Broom, & Paolucci, 2016). While the value of a dollar changes over time, comparing the number of minutes or hours devoted to a task, such as driving to appointments or providing care to whānau members in the home, is not affected by changes in currency rates allowing for comparisons to be made over time and between generations (Waring, 2018).
Within the broader public health literature, it has been proposed that the concept of time should be considered as a social determinant of health much like other resources such as income and wealth (Strazdins et al., 2016). Time is socially patterned within societies as disadvantaged populations have less free time and more time scarcity and this may contribute to inequalities in health outcomes (Gee, Hing, Mohammed, Tabor, & Williams, 2019).
This conceptualisation of time as a resource and social determinant of health is useful within the context of this article as key informants identified many ways in which caring for whānau members through illness impacted on the time and resources of the wider whānau. Using time as one unit of measurement within an Indigenous measure of health would help capture these elements of illness that are currently invisible within Western economic measures. However, it is important to note that the way in which Indigenous peoples understand and conceptualise time differs to the way in which Western society views time, and this would require further research if time was to be quantified within an Indigenous measure of health.
Alongside this, the concept of quality of care was also raised as an important theme. All of the key informants discussed experiences of racism within the health system which was outside the scope of this article. However, these experiences shaped the discussion around what an Indigenous measure of health might look like as one of the key informants stated that this measure would need to capture the quality of care that an individual and their whānau receive within the health system as well as the quality of care that is provided by the whānau.
This concept of quality was also discussed by a number of the other key informants who emphasised the importance of health care that was culturally safe (Papps & Ramsden, 1996). While the concept of cultural safety and cultural competency has been integrated into the training of health professionals in New Zealand over the past 20 years, the experience of Māori participants and their whānau highlights that health care services continue to be delivered in a way that marginalises Māori values and fails to meet their needs as patients and whānau.
The final theme to be considered within this discussion focuses on the way in which financial costs to the individual and their whānau are included in the development of an Indigenous measure of health. Financial costs will continue to be an important parameter; however, any potential Indigenous measure of health would need to take in to account the indirect costs that are carried by the whānau when caring for a whānau member through their illness. Some of these indirect costs might already be considered within current economic measures of health, such as travel, parking, meals and accommodation. Within a Māori perspective of health and illness where the individual is located within the wider whānau, these costs might need to apply to more people than just a single carer. They would also need to consider the long-term financial costs involved in caring for a whānau member through their illness, even once they have returned home and are no longer receiving hospital care. The ongoing costs involved in accessing out-patient services and time off work to provide care can have a significant impact on household incomes.
One of the participants stated that the way in which Western economic frameworks assign a monetary value to health and illness may be considered unethical within an Indigenous worldview. However, economic measures of health are widely used to inform decisions about resource allocation that have significant impacts on Indigenous health outcomes (Schroeder & McKenna College, 2017). What is therefore needed are measures of health that reflect Indigenous values.
Further research is needed to develop an Indigenous measure of health that reflects Indigenous values. This Indigenous measure of health will almost certainly look very different to the economic measures of health that are currently used as the philosophical assumptions underpinning it will be informed by Indigenous worldviews. The use of time as a unit of measurement will require further research as Indigenous perspectives and conceptualisation of time differ to Western perspectives on time, but it might provide a useful alternative to the use of dollars as a unit of measurement within Western economic measures of health.
Conclusion
This article seeks to start a conversation around what an Indigenous measure of health might look like. It proposes that this measure would need to consider the individual within the context of the collective, placing the individual within their wider whānau, hapū and iwi and acknowledging their relationality with the lands and waters that they are connected to. For Indigenous peoples, this concept of collective wellbeing seems intuitive, and yet it is in stark contrast to the current economic measures of health that focus on the experience of illness for an individual. Developing an Indigenous measure of health that aligns with Indigenous values will provide policy makers with an appropriate tool for making policy decisions that improve Indigenous health outcomes and address persistent health inequities that are created and maintained by our health system.
Footnotes
Acknowledgements
We would like to acknowledge the key informants who shared their experiences as part of this research, guidance from the project’s Steering Group and help from Georgia McCarty for peer reviewing the coding of data.
Declaration of conflicting interests
The author(s) declared no potential conflicts of interest with respect to the research, authorship and/or publication of this article.
Funding
The author(s) disclosed receipt of the following financial support for the research, authorship and/or publication of this article: This qualitative study was funded by Ngā Pae o te Māramatanga in parallel with the quantitative cost-of-illness study. The funder was not involved in the conception, design, implementation or analysis of this study.
