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Life Care and Mäori Whänau Resilience

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Life Care and Mäori Whänau Resilience END- OF- LIFE CARE AND MÄORI WHÄNAU RESILIENCE Tess Moeke- Maxwell* Linda Waimarie Nikora† Ngahuia Te Awekotuku‡ Abstract This article focuses on the cultural resources that made Mäori carers resilient when providing care to an ill family member at the end of life. Caring often took place against a backdrop of poverty, personal factors, racism and a lack of health literacy affecting access to resources. The action values of aroha and manaakitanga, compassionate giving, caring, receiving and sharing established a resilient foundation upon which whänau engaged in the illness-to- death trajectory. It served to fortify the dying and their whänau and provided a sense of belonging and a meaning- ful way of engaging with illness, dying, death and bereavement. Keywords caregiving, culture, palliative care, resilience, whänau Introduction palliative care from acute to community settings places a huge responsibility on whänau to pro- Providing care to a whänau member at the end vide end- of- life care in the home setting (Gott, of life is an important contribution whänau Williams, & Moeke- Maxwell, 2014; Ministry make to each other, their communities and of Health, 2001). High incidences of chronic the nation. In New Zealand, the recent shift in and degenerative diseases among Mäori and * Research Fellow, School of Nursing, University of Auckland, Auckland, New Zealand. Email: t.moeke- [email protected] † Associate Professor, Mäori and Psychology Research Unit, University of Waikato, Hamilton, New Zealand. ‡ Professor, Mäori and Psychology Research Unit, University of Waikato, Hamilton, New Zealand. END- OF- LIFE CARE AND MÄORI WHÄNAU RESILIENCE 141 palliative care treatments that prolong life mean this capacity for adaptation and “bouncing whänau are increasingly being called upon to back” in the face of adversity. Across the life provide end- of- life care for months or years. course, the experience of resilience will vary According to the New Zealand Carers’ Strategy, (p. 152). Anyone can fi nd themselves caring for another Resilience studies tend to explore negative person, usually a family, whänau or aiga social processes like homelessness, poor health, member, at any time. Often this can happen recessions, discrimination, limited education, unexpectedly, e.g. sometimes as the result of and their consequences, such as at-risk chil- an accident or sudden illness. Most carers see dren and youth, and diminished mental health themselves not as carers but as relatives or (Steven et al., 2011). Research on carer resil- close friends of the person who needs support. iency provides some insight into protective (Ministry of Social Development, 2008, p. 4) factors during an often critical and diffi cult time for families. A study by Giesbrecht, Wolse, Caring requires families to “balance their Crooks, and Stajduhar (2014) investigated the paid work, their caring responsibilities and socio- environmental factors that facilitated other aspects of their lives” (Ministry of Social resilience among Canadian palliative caregivers. Development, 2008, p. 4). Risk factors com- Six factors played a role in shaping family carer pound when carers are unwell themselves, are resilience: access to social networks; educa- fi nancially challenged or have other stressors. tion/knowledge/awareness; employment status; Mäori whänau carers potentially face high risk housing status; geographic location; and the factors due to socio- economic and environmen- life course stage. Giesbrecht et al. (2014) assert tal factors which can become exacerbated at the there is an increasing responsibility on families end of life and affect, for example, home death to provide palliative care in the home, “result- preferences (Gott et al., 2014). This requires an ing in some caregivers experiencing high levels ecological approach (Bronfenbrenner, 1994) of stress and burden that may ultimately surpass to understand the pressures carers face and their ability to cope” (p. 1). They conclude that to understand people in interaction with, and resilience is multi- dimensional; it is a com- infl uenced by, the physical, social and economic plex process infl uenced by numerous related environments in which they live (Windle, 2011). variables that intersect to create positive and negative experiences (p. 1). In another study on resilience and family carers of people with Whänau resilience dementia, researchers identifi ed positive factors that increased resiliency, reducing the risk of The resilience and capacity of whänau to provide higher rates of depression, anxiety and hope- care and support to its members, particularly lessness; these were the use of coping strategies, during times of adversity, has been the focus faith, social support and personal characteris- of the New Zealand Carers’ Strategy (Ministry tics (O’Dwyer, Moyle, & van Wyks, 2013). of Social Development, 2008). Windle (2011) While the above studies highlight the fl uid describes resilience within the end- of- life con- nature of resilience, we must remain aware text as that most overlook the cultural foundation and meaning- making experience of participants. the process of negotiating, managing and Writing about end- of- life care practices amongst adapting to signifi cant sources of stress or Mäori, Paratene Ngata (2005) highlights ele- trauma. Assets and resources within the indi- ments that make up a cultural framework vidual, their life and environment facilitate of care which support the well-being of the MAI JOURNAL VOLUME 3, ISSUE 2, 2014 142 T. MOEKE-MAXWELL ET AL. individual and the broader whänau, thereby However, all whänau are different and members enhancing resiliency. Whakapapa, shared cul- may or may not share the same whakapapa tural and familial values, and a commitment and cultural values, beliefs and practices. Each to the process of caring for a loved person and whänau is made up of individuals who con- their whänau as a whole both strengthen and tribute to the overall resilience of the family as encourage a way forward. He draws attention a whole. Individual life histories refl ect highly to the strength of the whänau as a collective, specifi c gendered and ethnic subjectivities and a unifi ed group, where individuals carry the life experiences (Moeke- Maxwell, 2005, 2008) responsibility of ensuring the well- being of the which shape coping thresholds and capabilities. group is maintained. He demonstrates that Individuals exhibit varying coping abilities, so these cultural processes seek to reduce indi- that some are able to manage adversity and vidual suffering as this negatively impacts and stress more effectively; for example, the presence weakens the whänau as a whole. The cultural of early childhood attachment or trauma may imperative to release overwhelming emotions, affect personal resiliency (Steven et al., 2011). for example, is important to reduce risk of In this paper we present an aspect of the depression and anxiety associated with loss and findings of the broader Kia Ngäwari study grief. For Ngata, dying and death are a familiar (2010–2012) funded by the Health Research terrain and ancient tikanga are in place to man- Council of New Zealand. The aims of Kia age this part of the life cycle. A profound belief Ngäwari were to investigate the end- of- life in wairuatanga, the deeply fl owing beliefs and experiences of Mäori and their whänau to cultural practices involving the spiritual realm, understand their palliative care needs, cul- permeate all aspects of life and govern all stages tural requirements and bereavement. Below, of living and dying (Pere, 1991). we present and discuss those fi ndings related The definition of the term “whänau” to resilience and whänau capacity to care for employed throughout this paper is “a collective their ill and dying whänau member with dignity of people connected through a common ances- (Moeke- Maxwell, Nikora, & Te Awekotuku, tor (whakapapa) or as the result of a common 2013a, 2013b). purpose (kaupapa)” (Families Commission, 2010, p. 9). Whänau resilience is defi ned as the processes which support whänau in caring for a The Kia Ngäwari study, 2010–2012 member following news of a life- limiting illness. It is the capacity to respond productively to the The study employed a Mäori- centred eth- challenges that arise through the process of nographic research design which included caring for an ill family member throughout the face- to- face interviews with whänau, journ- living, dying and bereavement phases. Whänau aling, photo elicitation, case studies and resilience is therefore inherently relational and autoethnography (Denzin & Lincoln, 2005; is conceptualised as a capacity born out of the Moeke- Maxwell et al., 2013a, 2013b). Twenty- interrelatedness and associated cultural and seven adult men and women and their whänau social capital of a collective such as whänau situated predominantly in the Waikato and (Houkamau & Sibley, 2010). South Auckland engaged in the study. Most In a whänau- centred resilience framework were over the age of 50 and the group was the family is viewed as somewhat fl uid as new divided into two cohorts: those who were car- members are included through birth, relation- ing for someone with a life- limiting illness and ship, marriage and evolving social networks. those with historic caregiving experiences. Whänau well- being and that of its individ- Fifteen whänau had a family member with a ual members are mutually inter-dependent. current life- limiting illness while the remaining MAI JOURNAL VOLUME 3, ISSUE 2, 2014 END- OF-
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