Māori realities,intimacies,and sexual expressions: reconceptualising consent to uphold kaumātua mana in aged residential care

Introduction

Caring for kaumātua (Māori elders) in any care context means to value their worldviews and those of their whānau (extended family). This recognition is especially true when it comes to the ethics of consent. This article addresses the ethics of consent around intimacy and sexual expression for kaumātua in residential care. Contemporary notions of consent in care contexts are largely shaped by western legal traditions (Schouten et al., 2021), and whether such notions are appropriate are the focus of this article. For the purposes of this article, intimacy means any emotional and physical closeness, or touch provided by someone other than a caregiver providing necessary care. The data for this article are drawn from a national 3-year research study undertaken in Aotearoa (New Zealand) (Henrickson et al., 2020). While Māori were not the exclusive focus of the national study, we were so impressed by Māori participants telling that we felt it was important to honour kaumātua and make their voices heard beyond the usual technical research reports and contexts.

Although there is a significant international literature that addresses the intersections of intimacy, sexuality, and consent in the residential care context, none of that literature is situated in Indigenous constructions of consent. In the nursing and social care practice literature, there is significant focus on cultural and epistemological competence especially when practitioners are working in specific cultural contexts (Hardy, 2018; MacFarlane, 2012; Warbrick et al., 2016). Working from an epistemologically competent perspective means not merely understanding cultural differences, or even the meanings conveyed by those differences, but being able to view the world from the care recipient’s perspective, a kind of radical empathy; this is inevitably an iterative, hermeneutic process (Henrickson, 2005). Our context is further informed by Te Tiriti o Waitangi (The Treaty of Waitangi), signed between many Māori iwi (tribes) and the British colonial authority in 1840, which set out the responsibilities and rights of both Māori and British settlers, and which forms part of the constitutional arrangements of Aotearoa (Orange, 2015). We acknowledge that understanding the implications of Te Tiriti o Waitangi has been the subject of much controversy and debate (Hayward & Wheen, 2016; O’Sullivan et al., 2021; Theunissen, 2011) which lie beyond the scope of this article.

Background

All caregivers, inclusive of health professionals in this context, who work with kaumātua must deliberate about whether a kaumātua expects the inclusion of their whānau in all significant decisions or whether they are caring for a kaumātua who prefers to make their decisions independent of whānau. This responsibility is more significant for kaimahi (Māori care workers) if they are available. Such deliberation can be complex. Kaimahi need to be wide-ranging and comprehensive in their decision-making because kaumātua are a diverse group. Some kaumātua embody a traditional understanding of te ao Māori (the Māori world), one that includes interrelatedness and interconnection, while others live with a more contemporary Māori worldview of self and others, shaped by the impact of colonisation (Muru-Lanning et al., 2021; Wilson et al., 2021). Traditional te ao Māori is whānau-inclusive; increasingly, contemporary worldviews come with a more individualised sense of self. Kaimahi may be operating with different expectations and worldviews from kaumātua, having learned to navigate the ubiquity of colonialism differently, which further complicates the intersecting diversities of Māori worldviews. Only tentative assumptions can be made about how Māori across different generations or roles will make decisions.

At the project outset, guided by the first author and the kaumātua of our community advisory board, the researchers were cognisant of these differing worldviews and the legacy of colonialism. Our study was informed by mātauranga Māori (Māori knowledge). We sought to understand the distinctive contribution that Indigenous knowledge can make to our understandings of consent, sexuality, and intimacy for older persons. From the beginning of the project, we noted tensions among different definitions of consent, with legal, ethical, and regulatory constructs that understand consent as individualised, and the Māori position of collective consent (West-McGruer, 2020) and strove to identify and accommodate those tensions in our research question and methodology. The research question guiding the larger project was as follows: What kinds of ethical decisions are being made about expressions of intimacy and sexuality in aged residential care? The study arose from clinical and legal practitioners’ requests for guidance about the ethical consent complexities that occur frequently in residential care.

Māori make up 16% of the total population of roughly 5 million in Aotearoa; 7.6% of people aged 65 years and older identify as Māori (Hikaka & Kerse, 2021). At this writing, more than 31,000 older adults live in residential care, of whom only 4.7% identify as Māori (InterRAI New Zealand, 2018); this means that proportionately Māori are moving into residential care less often than tauiwi (non-Māori people). Māori make up 10% of staff in caregiving and managerial positions in residential care (GrantThornton, 2010). Care quality is prescribed through Ministry of Health Standards, against which each facility is audited (Ministry of Health, 2022). There are specific standards that relate to Māori. However, the context of residential care is largely oriented to older adults who identify as Pākehā (a New Zealander of European descent) or other tauiwi. Māori cultural norms are largely absent in residential care settings, although there are exemplars of successful Māori-led models (Hikaka & Kerse, 2021). It is widely documented that Māori experience differential access to appropriate, accessible, and timely health care across all sectors (Dyall et al., 2014; Selak et al., 2020); a significant contributing factor to that difference is unconscious bias in care provision (Barton, 2018). In the residential care context, Māori are disadvantaged by caregivers not fully aware of their responsibilities under Te Tiriti o Waitangi, and staff are inadequately prepared and resourced to provide mana (authority, influence, dignity) enhancing care for Māori (Hikaka & Kerse, 2021).

There are differences between the way contemporary kaumātua and tauiwi older adults are positioned and treated in their communities. In te ao Māori, kaumātua are a taonga (treasure). Traditionally, they protect tikanga Māori (customary system of Māori values and practices) (tikanga) with a fundamental role in leadership and guidance at all levels of Māori society (Mead, 2020). The mana of kaumātua increases with age (Muru-Lanning et al., 2021), while often the dignity of tauiwi diminishes due to the pervasive impact of ageism (Amundsen, 2022). Challenging ageism and understanding these different cultural perceptions associated with being an older adult are important in residential care, yet tauiwi care staff may neither recognise their own culturally embedded ageism nor appreciate the cultural standing of kaumātua. For example, frailty does not remove the status of Māori elders, who are metaphorically tribal pillars (Durie, 2003; Pere, 1991; Rua et al., 2017).

Many kaumātua may not have experienced the rites of passage that give them te reo Māori (Māori language) (te reo) and tikanga to support their identity in a traditional sense (Durie, 1999). However, these in-between elders are often caught between the worlds of Māori and Pākehā and may carry a more contemporary kaumātua status. For example, their values may be traditionally Māori, while their daily life is Pākehā-oriented. Therefore, care provision must navigate two worlds; it must be mana-enhancing and focus on what is important with each kaumātua while at the same time not making assumptions about the experiences and worldviews of the kaumātua. However, all kaumātua need to be able to trust that the person who is caring for them will uphold their mana. Traditionally as kaumātua became less able to manage independently, the responsibility for maintaining mana shifted to whānau. In the contemporary context where care may be institutional, kaimahi need to recognise that care for kaumātua and their whānau must maintain their mana motuhake (self-determination and sovereignty) (Moeke-Maxwell, 2016). The inherent worth of understanding the importance of maintaining mana cannot be underestimated, particularly in a care context that is of an individualistic post-colonial origin (Simpson et al., 2020).

Literature review

There is a dearth of literature about implications for whānau involvement in kaumātua care around consent apart from nascent research in advance care planning (Frey et al., 2014). However, in te ao Māori, collective decision-making and the responsibility to uphold the mana of kaumātua are likely to carry far more weight for whānau than the legal position of individual autonomy. The mana of a group is enhanced by the contributions of each to the whole, and the mana of the whole reflexively enhances the well-being of each person (Mead, 2020). This orientation matters a great deal in residential care when traditional whānau expect to be involved in decisions about sexuality and consent for their kaumātua, and the facility staff, working from a more legalistic or regulatory framework, expect the resident to be the consenting person. Park and Astell (2017) note the low number of older Māori who have appointed an Enduring Power of Attorney (EPA). This legal expectation in Aotearoa to appoint a single person to oversee health decisions in the event of cognitive impairment, or in the absence of this appointment to defer to a Court decision, does not fit with cultural expectations of whānau interdependence and consensus decision-making. Notions of freedom and autonomy for older Māori focus on being able to live in accordance with Māori values, rather than individualistic rights-based assumptions (Butcher & Breheny, 2016).

For tauiwi, post-Enlightenment notions of individual rights are steeped in centuries of intertwined philosophical and religious ideas which have been transferred into the colonial agenda. During the European Reformation and subsequently the Enlightenment, as the role of the priest as intermediary between the divine and the person declined, the individual became increasingly responsible for their own salvation. Eventually, the individual person became solely responsible for their relationship with the divine and with the world. Capitalism became the dominant economic philosophy, and these philosophical and economic worldviews were transported around the world during the so-called Age of Exploration. This European perspective with its understanding of individual wealth as a signal of divine favour was exported and imposed by European merchants and explorers as they occupied and colonised territory throughout the world (Henrickson, 2022). Aotearoa was not exempt from this philosophical hegemony, which was completely at odds with the Indigenous collective worldview of Māori. Colonial law in Aotearoa that was established after the 1840 Te Tiriti o Waitangi by British colonisers was premised on individual rights and responsibilities. Among other things, this means that the law did not recognise the rights and roles of the whānau in decision-making. To this day, the whānau remain unrecognised and excluded in the consent process when a kaumātua is cognitively impaired; only a single designated individual who holds an EPA has legal authority.

The legal demarcation that gives family members the right to intervene in the welfare decisions of older persons with increasing cognitive impairment is unlikely to hold substantive meaning for Māori. Mate wareware (dementia) is understood by Māori as behavioural change that is part of normal ageing rather than a pathological condition. Although it is common for tauiwi to experience physical and social displacement with advancing dementia (Brannelly, 2011), whānau-centred care focuses on the continuation of identity, tolerance, and belonging. This difference in understanding changes the whānau response to the kaumātua with mate wareware and shifts their expectations of care. Māori normalise mate wareware and adjust their lives around the kaumātua, supporting them to be involved in daily activities and cultural activities (Dudley et al., 2019).

The individualistic legal orientation to privacy and consent influences how staff and residents interact when Māori move into residential care that has not been designed from te ao Māori. Māori values are hegemonised into a Pākehā model of care, are simply not recognised, or devalued, irrespective of the organisation’s good intentions. In addition, the communal living context of residential care offers opportunities for sexual expression that are not readily available to Māori when living with whānau. For tauiwi, people most commonly move from living independently into this communal environment as they become increasingly frail. However, in collective cultures, the move to non-whānau-provided care is significantly less likely to occur (Holdaway et al., 2021). The change to a residential care setting from a whānau care setting alters not only the context and values but also the people around them. Inherent in whānau care is the management of intimate relationships and sexual expression that uphold the mana of the kaumātua. With the absence of whānau involvement in everyday life, the focus on mana enhancement becomes dependent on kaimahi with differing worldviews who have not known the kaumātua prior to their cognitive decline.

Thus, layers of complexity encompass the lived reality for many Māori when considering consent, cognitive decline, and sexual expression alongside mana-enhancing care of kaumātua in residential care. These include the shift from a family environment to a non-relational communal one that does not reflect te ao Māori, new opportunities presented by a tauiwi-dominated communal environment, and the clash between Māori values and staff statutory responsibilities.

Methods

The original study was a national two-arm mixed-methods cross-sectional study conducted between October 2018 and October 2019. Survey respondents and interview participants were recruited from 35 residential care homes. This article is written based on Māori responses to the survey and participants in the interviews. Research team members attended staff meetings at all facilities, providing refreshments and creating the opportunity for preliminary discussions about the study. Given the sensitivity of the topic, this process enabled sharing between researchers and staff and raised group awareness of commonalities around uncertainties and tensions about care decisions. Making time for mihi (formal greetings and introductions) and whanaungatanga (connections to people, ancestry, and place) appeared to pave the way for engagement with the study.

For the quantitative arm, the research team developed and validated a knowledge, attitude, and behaviour survey (Cronbach’s alpha for the entire survey was .81). Surveys were distributed to staff at these staff meetings, with additional surveys left for staff unable to attend to complete. In total, 433 surveys were completed and returned from facilities throughout Aotearoa. From the surveys completed, it was found that 29 (6.7%) respondents identified as Māori, 281 (64.9%) identified as non-Māori, and 123 (28.4%) did not identify their ethnicity. The survey was anonymous and self-administered. The estimated overall response rate was 62.5%. Composite scores were developed for each domain and assessed. The data collected from the surveys were cleaned and coded, entered into statistical software for analysis, and the probability threshold set at α = .05. Data were checked for accuracy, missing data, outliers, and normality before statistical analyses were conducted. Missing items were coded with a neutral response.

The qualitative arm consisted of semi-structured interviews with participants recruited from the same 35 residential care homes. Staff, residents, and residents’ family members were invited to contact research team members if they were willing to be interviewed. Project staff conducted 75 interviews with staff, residents, and family members. Of the 24 staff interviewed, 5 out of 24 (20.8%) identified as Māori, and 1 of 26 (3.85%) residents interviewed identified as Māori. Despite our recruiting efforts, no family members interviewed identified as Māori. The lead author, a Māori researcher, conducted interviews with Māori and led the coding and analysis of Māori data informed by the work of Pere and Barnes (2009).

A social constructionist approach was used to obtain and analyse the qualitative data. This approach focuses on how meanings are created, negotiated, and interrupted (Burr, 2015). Each member of the research team analysed the raw data and then met as a team to discuss and agree on the key themes and their meanings in relation to the research question. This inter-relater reliability increased the rigour of the coding and data analysis (Fereday & Muir-Cochrane, 2006). The agreed meanings were then further tested with the advisory group as representatives of the aged residential care sector. Finally, the initial technical report was peer-reviewed by a community advisory panel, which included a kaumātua, experienced researchers, practitioners, and sexuality educators in the field.

The study was informed by Te Ara Tika Guidelines for Māori Research Ethics (Hudson et al., 2010) and approved by a university Human Ethics Committee whose members were satisfied that the research team was appropriately culturally informed and had demonstrated expertise in sexuality research with marginalised people, such as those living with mate wareware. Regarding involvement of residents with cognitive impairment, we used the approach described by Brannelly (2011) to ensure that notions of protection did not exclude people unnecessarily. The interviews were conducted with participants kanohi ki te kanohi (face-to-face).

Results

Discussion

With increasing age, the life focus of traditional kaumātua becomes more about upholding the tikanga of the marae and supporting events like tangihanga and marae-based celebrations. On the marae, koroua (male elders) and kuia (female elders) work in unison, complementing each other’s role. Neither one is more important. For example, it is kuia who karanga (call, summon) visitors onto the marae and koroua who give the whaikōrero (speeches). These are roles that are generally undertaken by kaumātua, both koroua and kuia. Not all Māori achieve this status, especially those who are most impacted by colonisation and urbanisation, and who therefore live with some alienation from tikanga. It is essential for mana motuhake that the status of kaumātua is uninterrupted by the move to residential care. Hikaka and Kerse (2021) identified several residential care villages in Aotearoa that are exemplars of culturally responsive architectural design, policy, and staffing, aligned with te ao Māori and inclusive of tikanga and te reo in everyday routines, enabling the homes to be run in a culturally authentic way.

Kaumātua relationships are often formed in a way that supports this latter part of their life. For example, as kaumātua, koroua, and kuia may be in a partnership and have a strong relationship with each other, that is based on respect for the roles they hold as guardians of the kaupapa (focus, policy, protocols) rather than an intimate and personal relationship. The following example highlights such a relationship. The pair, well known to the first author, was an uncle (age 70) and his niece (age 75). Many people thought they were husband and wife because they travelled to almost all hui (gatherings) together supporting the teaching of tikanga, modelling tikanga, and upholding tikanga for many years after they had both retired. Both were widowed. The numerous meetings they attended often tired them, but they always considered what was important and saw each kaupapa to its natural end. They grew old doing this service and being loved and supported by a large and constantly growing supportive whānau and network. They constantly encouraged other kaumātua to join them and attendance grew. It also meant they set an example for attending other social functions such as kaumātua hui, social gatherings, and other kaumātua activities provided by community health providers. For these kaumātua, the roles they played on the marae and in their world defined their relationship. It was an intimate relationship based on their individual lives as Māori and their status as holders and transmitters of tikanga and te reo. They cared for and respected each other and all those who were around them. Their intimacy was based on their intellectual, spiritual, and whanau connection rather than a physical, romantic, or sexual connection. For this uncle and niece, moving into a facility that operates from a western, statutory worldview, and having to address assumptions about them, could pose a real threat to the core of their being. Imposed sexualised or romantic assumptions radically underestimate and undermine the integrity and tapu of their relationship and their mana. It is essential for them to be able to maintain the intimacy of their relationship and to have its importance recognised, respected, and protected.

Not only is it the case that certain kinds of non-sexual intimacy may not be well-understood, intimate desires that are of a sexual nature can be difficult to discuss, as for many Māori openness about discussing things of a sexual nature and being clear about one’s own sexuality have been clearly shaped by colonisation and the influence of Christianity (Aspin & Hutchings, 2007; Mikaere, 2005; Morison & Herbert, 2019). Wider use of mātauranga Māori in school-based sexuality curricula would ensure that rangatahi feel more prepared to make decisions in the context of te ao Māori (Le Grice & Braun, 2018). Such an approach may well impact future generations of Māori and how they engage with intimacy, sexuality, and the ethics of consent.

However, in the meantime, facilities that care for older persons need to change how they move forward with this knowledge (Hikaka & Kerse, 2021). It is critically important that as the number of kaumātua in residential care increases, the efforts to understand what is important to them also grow. This means that researchers, policymakers, and care providers need to respectfully engage with Māori to develop education, policies, and models of care that are founded in te ao Māori, and that mātauranga Māori is integrated into institutional care attitudes and practices (Dudley et al., 2019). Our experiences and findings suggest that further research is essential and will need to expand notions of consent that include a wide variety of epistemologies of consent in a post-colonial world. This will be particularly important in the context of residential care and even more so for kaumātua with mate wareware.

Conclusion

This study has identified a knowledge gap in understanding consent processes involving kaumātua who are living in residential care and their whānau. This means that kaumātua and their whānau are vulnerable to the often-limited cultural knowledge of care staff, the majority of whom identify as tauiwi and whose care is guided by post-colonial individualist rights-based laws, ethics, and policies. Caregivers may encounter situations where they do not understand the cultural nuances and complexities, and resort to their own individual values or institutional policies. The current literature provides scant direction for practitioners who want to engage with te ao Māori conceptualisations of consent that are mana-enhancing. Cognitive decline and mate wareware add another layer of complexity about who makes decisions and how decisions are made around intimacy and sexuality when the mana of the kaumātua may be at risk. Promoting deeper understanding about later life care is an urgent priority given the increasing life expectancy of all people, including Māori, and the ever-increasing diversity among Māori.

Recruiting kaumātua, whānau, and kaimahi to this study was complex, which was expected given the proportionately small number of Māori engaged with the aged residential care sector and their reticence to discuss topics of this nature. Greater understanding of the complexity of Māori values around consent, intimacy, and sexual expression in kaumātua may be achieved by a more focused exploration using kaupapa Māori. Based on these findings, we propose that it is important for kaimahi and Pākehā and tauiwi caregivers to be familiar with providing culturally respectful care to kaumātua, and that the mana of kaumātua must be acknowledged and upheld in the residential care context. Kaumātua who have lived their lives immersed in te ao Māori need to be cared for by kaimahi and caregivers who understand what that means to the kaumātua, the whānau, and in the caregiving context; kaumātua who have lived more in the Pākehā world may find themselves searching for or reverting to more traditional meanings at the end of their lives. Mana-enhancing care can only be achieved by building relationships with kaimahi, kaumātua, and their whānau, which facilitate understanding and result in care that fully comprehends what is important to each kaumātua and their whānau.