Introduction
Aotearoa New Zealand’s population is ageing: approximately one in four individuals will be 65 years old or older by 2048 (Stats Reference Stats2022). Therefore, it is predicted that unpaid family and kin carers (e.g. spouses, daughters, sons, children-in-law, siblings and friends) will play an increasingly important role in caring for older adults at home (McAllum et al. Reference McAllum, Simpson, Unson, Fox and Kilpatrick2021; Ministry of Social Development 2019). Moreover, extended family – or whānau – care is a norm for Māori families (e.g. Durie Reference Durie1999; Nikora et al. Reference Nikora, Karapu, Hickey and Te Awekotuku2004; Williams et al. Reference Williams, Moeke-Maxwell, Wiles, Black, Trussardi, Kerse and Gott2018) and Māori women are more likely to be carers than others (Ministry of Social Development 2019, 10). Although the term ‘carer’ is internationally recognised, in Aotearoa New Zealand alternative words such as ‘supporter’ and ‘manaakitanga’ (caring) may better express how whānau carers see their role (Ministry of Social Development 2019, 9). Also, Māori values, such as aroha (love), whānaungatanga (relationships/connections), whakapapa (genealogy) and living within Te Ao Māori (the Māori world), situate care as involving reciprocal and collective efforts. These are based on bonds of association and obligation derived from kinship ties (Mead Reference Mead2003; Tate Reference Tate2012). Kin includes close family (whānau te rito) and broader groups of relations (whānui) such as great-grandparents, grandparents, parents, aunts, uncles, siblings, nieces, nephews and cousins (Tukukino 1985 cited in Collins and Willson Reference Collins and Willson2008).
Normalised expectations of giving and receiving support within the whānau may lead to whānau carers under-reporting the care given to other whānau when surveyed. In addition, such normalisation may create situations where whānau do not seek or access external support when needed (Ministry of Social Development 2019). Consequently, Māori are likely under-represented in the estimated 10 per cent of the population caring for a relative or friend with an illness or disability (Kia Piki Ake Group 2019). Other international studies report similar findings for different cultural groups (e.g. Greenwood et al. Reference Greenwood, Habibi, Smith and Manthorpe2015).
Empirical studies in cultural contexts where multiple individuals habitually make up support and care networks (e.g. Canadian First Nations, Hawai’i, Mexico) show that family interdependence, intergenerational and intragenerational solidarity, and norms that emphasise reciprocity all shape how care is organised. Yet, studies also suggest that the ideal of shared family responsibility is not always realised in practice (Akinrolie et al. Reference Akinrolie, Okoh and Kalu2020; Browne et al. Reference Browne, Mokuau, Ka’opua, Kim, Higuchi and Braun2014; Habjan et al. Reference Habjan, Prince and Kelley2012; Mendez-Luck et al. Reference Mendez-Luck, Applewhite, Lara and Toyokawa2016). This disconnect is problematic because unmet expectations of collective care, where multiple care-givers take on care-giving responsibilities, may lead to heavier burdens for primary carers, splintered care coordination and heightened tensions within family systems. Furthermore, although the roles and tasks of Māori whānau carers have been explored (e.g. Collins and Willson Reference Collins and Willson2008; Nikora et al. Reference Nikora, Karapu, Hickey and Te Awekotuku2004; Simpson et al. Reference Simpson, McAllum, Oetzel, Berryman and Reddy2022; Wiles et al. Reference Wiles, Moeke-Maxwell, Williams, Black, Trussardi and Gott2018; Williams et al. Reference Williams, Moeke-Maxwell, Wiles, Black, Trussardi, Kerse and Gott2018), limited reporting exists about their support needs within whānau care networks (Kuluski et al. Reference Kuluski, Peckham, Gill, Arneja, Morton-Chang, Parsons and Sheridan2018; Lay-Yee et al. Reference Lay-Yee, Pearson, Davis, von Randow, Kerse and Brown2017). Therefore, this exploratory study investigated the experiences of whānau carers looking after kaumātua (older relatives) in whānau care collectives considering the international literature about collective care.
The literature review defines collective care systems, explores care system models and how care responsibilities are shared within families, and situates Māori whānau care within these frameworks. The research question, methods, findings and discussion follow.
Literature review
Care systems, networks and models of family care
A care system incorporates the division of care responsibilities and the contributions to care recipients and other carers (Keith Reference Keith1995). Most care systems studies use network theory, with networks defined as social structures constituted in communication (Stohl Reference Stohl2004). This approach assumes that ‘specific commitments exist in systems of relationships and that formation and negation of commitments occur in the context of one’s connections to a network of others’ (Piercy Reference Piercy2007, S382). Through this lens, care systems are networks comprising actors with varying levels of commitment, including those who, due to their relationship with the care recipient, are ‘involved in care, support family members involved in care, and/or could be involved in care’ (Marcum et al. Reference Marcum, Ashida and Koehly2020, 128). Such relationships include immediate and extended family (i.e. kin), non-kin and formal carers.
Within a care system, however, social, support and care networks can be assessed separately to estimate a care system’s ‘caring capacity’ by identifying current and potential informal carers (Keating et al. Reference Keating, Otfinowski, Wenger, Fast and Derksen2003). Social networks encompass all social ties and linkages, whereas support networks comprise a smaller subset of individuals willing to provide emotional and tangible aid to care recipients. Smaller than support networks, care networks require a greater range of more frequent care-related tasks. They may comprise as few as two members (or 1.5 on average when emotional support is excluded; Fast et al. Reference Fast, Keating, Derksen and Otfinowski2004).
A care system includes these three types of network as it encompasses multiple forms of care-giving and care-receiving by network members who care for care recipients and carers (see Marcum et al. Reference Marcum, Ashida and Koehly2020). Thus, positioning care, support and social networks as components of a broader care system avoids reducing care to hands-on tasks without accounting for emotional ties among network members. In addition, this more comprehensive conceptualisation enables us to explore how differences in caring capacity (e.g. among primary carers, occasional carers and potential carers) contribute to divisions in seen and unseen aspects of care within the care system.
Analyses of care systems also use the convoy of care (Antonucci et al. Reference Antonucci, Birditt, Sherman and Trinh2011) and social care (Cantor Reference Cantor1991) models. These models document differences in carers’ commitment levels and changes in care responsibilities. The convoy model depicts transformations within the care system over time as individuals engage and disengage with the carer role – like passing a baton between members in a convoy. Cantor’s social care model also acknowledges multiple carers represented in a series of widening concentric circles around the care recipient. However, Cantor’s model ignores the possibility that carers support other carers as well as the care recipient and reinforces the notion of a primary carer. Such limited role distribution and care organisation may not represent the case of those in collective care systems.
Collective care systems
We define collective care systems as those where multiple individuals make up support and care networks instead of having one primary carer. Two empirical studies illustrate why the assumption of a single primary carer is problematic: one US study of 30 care networks found only 6 networks that nominated one individual as the primary carer; the other 24 had multiple primary carers (Marcum et al. Reference Marcum, Ashida and Koehly2020). Another US researcher (Keith Reference Keith1995), who examined how siblings organised care for an older parent, identified several multi-carer models of collective care, including partnership and team systems. In partnership systems, same-sex siblings consulted each other, made decisions jointly and took responsibility for care, often criticising absent, non-participative siblings. In team systems, care responsibilities were dispersed among siblings and, although responsibilities were not equally shared, siblings did their part to avoid overburdening any one sibling care-giver.
Collective care can involve individuals caring for multiple family members simultaneously or successively and multiple carers looking after one care recipient (e.g. Evans et al. Reference Evans, Coon, Belyea and Ume2017). Exploring collective family care systems with multiple carers and recipients requires researchers to investigate pluralistic family formations (Roberto and Blieszner Reference Roberto and Blieszner2015, 306). Such formations include extended kin, stepfamilies, neighbours and friends (Barker Reference Barker2002; Crosato et al. Reference Crosato, Ward-Griffin and Leipert2007) and cultural contexts where kinship ties are central in the care of any family members (Dumit et al. Reference Dumit, Abboud, Massouh and Magilvy2015). Within such collective care systems, members must determine either implicitly or explicitly how to share care responsibilities (Finch and Mason Reference Finch and Mason1993) – a consideration for the next section.
Organising care responsibilities within collective care systems
A key to the functioning of collective care systems is how care responsibilities are allocated across the social, support and care networks. Not all care systems use explicit discussion or negotiation as a means of decision-making about how care will be organised and coordinated (McAllum et al. Reference McAllum, Simpson, Unson, Fox and Kilpatrick2021). Transitions to care roles can be ‘characterised by non-decisions [where] situations simply emerge regarding the distribution of responsibility’ (Aasbø et al. Reference Aasbø, Rugk Asa, Solbrække and Werner2017, 613). Yet, conflict may erupt when care-giving is not explicitly labelled as such from the outset. For example, one sibling may become a parent’s carer by default and stay in the role for their adult life. Other siblings may see the carer as avoiding participation in the paid workforce and ‘using’ care to live rent-free in the family home (Lashewicz Reference Lashewicz2011). Here, care and its value become taken for granted and unsupported within the family system.
Explicit negotiations, which require ‘open discussions in which people develop a common understanding of balancing the responsibility between giving and receiving help, and who should bear that responsibility’ (Aasbø et al. Reference Aasbø, Rugk Asa, Solbrække and Werner2017, 613), seem to offer more opportunities for collaboration within family systems. However, a lack of consensus within networks can generate considerable conflict (Marcum et al. Reference Marcum, Ashida and Koehly2020). For example, some family members may be propelled into a care role when others are unwilling to give up employment or move closer to the care recipient (Connidis and Kemp Reference Connidis and Kemp2008; Leopold et al. Reference Leopold, Raab and Engelhardt2014). Others may reject care responsibilities imposed by other family members’ unexpected role transitions (Burton Reference Burton1996).
Indeed, the allocation of roles in collective care systems takes different forms. Davis (Reference Davis1997) provides a helpful typology of collective care in a study of how US families managed conflicts about coordinating care for an older family member. She found that conflicts arose within three intra- and intergenerational care models: substitutive, complementary and conjoint care. Substitutive care involves a family member temporarily taking on the primary carer’s role to provide respite. Complementary care refers to other family members independently providing different services (e.g. the primary carer takes on activities of daily living (ADLs), which are basic personal care functions such as feeding, bathing and dressing, while other family members take responsibility for instrumental activities of daily living (I/ADLs), which enable one to care for oneself and one’s home (e.g. cooking, cleaning, shopping and taking medication)). Finally, conjoint care requires collaboration, as family members offer the same care services in conjunction with one another.
Similar patterns are evident in Katz and Lowenstein’s (Reference Katz and Lowenstein2002) study of Arab Israeli families’ decision-making patterns regarding care responsibilities. The four rigid-to-flexible styles include (1) one-off, ‘unilateral’ decision-making by the care recipient about who will care (no substitutive care occurs); (2) a ‘working machine’ style where specific tasks are allocated to certain family members (a form of complementary care); (3) a ‘roundtable’ pattern where family members collectively (re)define tasks and renegotiate responsibilities as needs evolve (a successful form of conjoint care); and (4) ‘Rashomon’ style (referring to a classic Japanese film depicting an event from different viewpoints) characterised by ambiguity and chaos with no clear decision-making patterns. Families who organised care according to unilateral and Rashomon patterns experienced the most carer burden, ‘working machine’ families some burden and the roundtable families the least burden. Care tasks were made visible in roundtable families and shared more effectively among more family members.
A study of home-based collective care networks in Argentina and Chile (Gutierrez and Ochoa Reference Gutierrez and Ochoa2021) offers additional insight into how various forms of care organising influence task allocation, care-givers’ awareness of others’ work and the quality of care. The way that tasks were delineated gave rise to four distinct roles: assistants, monitors, helpers and outsiders. Assistants, primary carers who lived with care recipients, were key in coordinating others’ interventions. Among assistants, female family members typically attended to older adults’ social and affective needs, and male family members to instrumental, safety and security needs that improved the comfort of the living environment (see also Montgomery and Kosloski Reference Montgomery and Kosloski2009). Monitors, family members who lived elsewhere, actively engaged with care recipients’ needs. Finally, helpers assisted with instrumental tasks and outsiders assumed no direct care responsibilities. Unfortunately, monitors could be unaware of each other’s and helpers’ care work, leading to blind spots in the collective care system. This resulted in older care recipients’ needs being either over-supplied or unaddressed. Network theory’s ‘bridging ties’ support this finding: when members of the care system are connected to the older adult but not to each other, care coordination becomes fragmented and pressure on primary carers increases (Goldman Reference Goldman2016).
These studies of intra- and intergenerational family care and decision-making patterns illustrate different ways of organising care-giving responsibilities within collective care systems in Argentina, Chile, Israel and the United States. Importantly, they problematise two assumptions: (1) that collective care occurs only or primarily in cultural contexts where extended or pluralistic family ties are common; and (2) that structural elements of social relations that shape expectations of care, such as gender, birth order or marriage status, matter only in such cultural contexts. Such structural elements, however, matter in all contexts, and, because they are complex, dynamic features of care organising must be situated within the carer’s specific cultural context rather than assuming that similarities exist across collective cultural contexts. To this end, the following section outlines cultural aspects of Māori whānau care.
Māori whānau care
Māori whānau care is inherently collective, with multiple individuals, joined by bonds of association and kin-connectedness, supporting a whānau member. Such connectedness includes close family (whānau te rito) such as great-grandparents, grandparents, parents, aunts, uncles, siblings, nieces, nephews and cousins, and broader groups of relations (whānau whanui) (Collins and Willson Reference Collins and Willson2008). Whānau carers may take on multiple roles, including being medication and care-diary managers, and whānau support at medical appointments (Nikora et al. Reference Nikora, Karapu, Hickey and Te Awekotuku2004). Whānau carers also mediate between the whānau member receiving care, healthcare professionals, other whānau carers, service providers and the support network of family and friends (Simpson et al. Reference Simpson, McAllum, Oetzel, Berryman and Reddy2022; Wiles et al. Reference Wiles, Moeke-Maxwell, Williams, Black, Trussardi and Gott2018). Such roles and tasks are reflected in Collins and Willson’s model of whānau care, which identifies three layers of support: primary informal support from close family, formal tertiary support from health professionals and in-between layers of secondary support from extended whānau members. Coordinating care roles and tasks with these layers of the whānau care collective is complex.
Building upon the literature about the challenges of providing collective care, this study explores how Māori whānau carers looking after kaumātua (older relatives) talk about organising care within a cultural context where collective whānau care is valued, expected and normal. Hence, we ask the following research question: How do Māori whānau members experience care coordination within a whānau collective?
Methods
The original study design included 20 past and current family carers of an older whānau member or kaumātua. However, Covid-19 regulations halted interviews in 2020, with only 16 carer participants having taken part,of whom 14 were Māori. Therefore, in 2021, we determined to work with the Māori carers’ contributions, taking a culture-centred approach (Simpson et al. Reference Simpson, Berryman, Oetzel, Iti and Reddy2016) to the data analysis.
Participant recruitment
Two non-Māori researchers and two Māori research assistants (with experience in caring for older relatives) used snowball (Patton Reference Patton2002) and networking methods to identify potential participants. Beginning with interviewing whānau carers they knew, interviewers asked interviewees (snowball method) and others (e.g. family members, friends) for referrals to people they knew were or had been whānau carers of kaumātua (network method). During the first interaction, interviewers introduced themselves and the study, outlining the interview process, goals and expected outcomes. Before starting, they offered to review the information sheet with the participant, which covered the likely time commitment and participants’ rights to question, clarify or decline answers and to halt the interview. They explained data storage, publication presentation and identity protection by using pseudonyms and removing potentially identifying personal information or family situations.
Data collection
Māori communication protocols (McClintock et al. Reference McClintock, Mellsop, Moeke-Maxwell and Merry2012; Mead Reference Mead2003; Tate Reference Tate2012) guided the interviews with whānau carers. Qualitative semi-structured interviews (each lasting 40–90 minutes) were jointly or individually conducted with one or two whānau carers. One researcher guided and supported the Māori research assistants’ first three interviews involving one or more whānau carers. The interviews were audio-recorded and transcribed into 134 pages of single-spaced transcripts, with each participant being assigned a pseudonym. The University of Waikato (reference WMS 18/38) granted ethical approval. As part of the approval, Māori interviewers were involved, and whānau carer participants were invited to have support persons present. We were sensitive to the possibility of health and loss issues emerging during the interviews, and, therefore, follow-up resources for care-givers were available if needed. If a participant became distressed during the conversation, the research team was prepared to seek professional, family and/or other assistance, with the participant’s permission.
Culture-centred participation was facilitated with Māori communication protocols and invitational, conversation-generating enquiry. Such protocols in the semi-structured interviews included meeting face-to-face (kanohi ki te kanohi), beginning with a greeting (mihi) and establishing relational connections centred on kin and/or experience with whānau care (whakawhānaungatanga); acknowledging the strength of whānau experience for the study; whaikōrero, which allowed for ‘respectful listening, in-depth focused discussion, and the collection of information’ (McClintock et al. Reference McClintock, Mellsop, Moeke-Maxwell and Merry2012, 97); using Māori language (te reo) where possible; providing a koha (gift) as compensation for participation (grocery voucher for $50 and morning or afternoon tea); and ending with a prayer (karakia). Although such processes may be similar to general qualitative interview approaches (e.g. Patton Reference Patton2002), the cultural meaning of these communication protocols lies within Te Ao Māori (see Mead Reference Mead2003).
Conversation starter questions included ‘What brought you to care for your [whānau member]?’, ‘Who else is involved in caring for [—]?’, ‘What kind of relationship(s) do you have with [—], other members of your siblings or cousins, and your children or partner?’, ‘How do these relationships help or hinder your or others’ care role(s)?’ and ‘How do others (whānau, friends, co-workers) respond to or talk about your care role?’
Data analysis
Thematic analysis identified patterns across the data (Braun and Clarke Reference Braun and Clarke2006; McAllum et al. Reference McAllum, Fox, Simpson and Unson2019). Within this approach, carers’ talk about caring for a whānau member was interpreted through a cultural-discursive analytical framework (Simpson et al. Reference Simpson, Berryman, Oetzel, Iti and Reddy2016). Within this framework, talk is a resource whereby people reveal their ideas, concerns and goals in words and meanings shaped by shared beliefs (Tracy Reference Tracy2020). This lens examined expressions of Māori values within kin relationships (whānaungatanga), such as nurturing others (manaakitanga) and love (aroha), that help to shape whānau care.
The data analysis began with initial coding focused on how carers talked about care situations and what they and other whānau members did in caring for their kaumātua. Such talk included shifts in context (‘in my head/in reality’); pronouns and labels that indicated groups (us/them, visitors); changes in verb tense from past to present; and expressions that suggested layers of meaning (‘she’d look all right’). Next, these codes were organised into second-level axial codes using the constant comparative process (Charmaz Reference Charmaz2014). Then, the axial codes were transformed into themes that ‘describe the scope and content of each theme in a couple of sentences’ (Braun and Clarke Reference Braun and Clarke2006, 92). Table 1 illustrates the process with examples of initial codes, second-level codes and initial themes.
Examples from the coding process
Two researchers independently coded the transcripts in consultation with the Māori research assistants and some participants. The initial codes were reconciled, and new codes were re-examined and cross-checked between coders. To enhance analytical rigour and cultural resonance, participants were invited to comment on the preliminary thematic analysis. Three participants met in person; three read the summary document; three could not take part; and five did not respond. Ongoing conversations between participants and researchers resulted in the initial themes being further delineated, collapsed, renamed or eliminated. During these processes, participants offered English approximations of Māori concepts. The outcome was three themes, each with sub-themes.
Findings
Of the 14 Māori whānau carers (aged 23 to 72 years; 12 female and 2 male), seven current carers had 6 months to 7 years of experience, and seven past carers had 7 to 20 years of experience (see Table 2). Three were past carers of the same whānau member, and two were current or past carers within the same extended whānau and cared for different members.
Whānau carer participant demographics
The findings illustrate how whānau carers talk about their experiences with care coordination within a whānau collective. Three themes were related to the collective organisation of care: (1) whānau caring for kaumatua as normal; (2) whānau care as collective coordination: and (3) whānau carer support needs and knowledge as unseen.
Whānau caring for kaumātua as normal: ‘It’s what we do’
This theme encapsulated two norms that underpinned participants’ transition from belonging to a kaumātua’s broader social network to taking on a role within their support or care network (Keating et al. Reference Keating, Otfinowski, Wenger, Fast and Derksen2003): (1) expectations of intergenerational reciprocity and (2) Māori cultural values of whānau care. In privileging these norms, participants indicated the value and positive contribution of care practices that differ from those of the dominant culture, where institutional care for older adults is more common (Holdaway et al. Reference Holdaway, Wiles, Kerse, Wu, Moyes, Connolly, Menzies, Teh, Muru-Lanning, Gott and Broad2021). However, even though caring for older relatives was valued, its normalcy meant that the range and impact of caring were not always seen or understood by whānau carers before taking on the role.
Expectations of intergenerational reciprocity: Often, expectations of giving and receiving intergenerational care meant that talk about who would care did not occur because care was the ‘natural’ and ‘normal’ thing to do. For example, Kara mentioned: ‘I ended up with [Auntie] in my care. Well, I wasn’t going to argue because it’s family, you know? … Yeah, you don’t argue. You just do it’ (1Ka/17). Participants also noted that kaumātua might expect such support. Mere’s comment illustrates this: ‘You do make sacrifices. Where you might have had personal freedom before becoming that care person …. But the person you’re looking after … expects you to give up these things’ (4Me/58). Likewise, Maia emphasised how a ‘mindset’ based on reciprocal whānau relationships normalised care: ‘I suppose everyone in my family, like my extended family, like Nan’s siblings and their children and grandchildren, it was just normal, what’s supposed to happen. You’re supposed to look after your Nan because she looked after you, which was my mindset as well; that’s why I did want to do it’ (12Ma/84).
Although the expressions ‘You just do it,’ ‘it was just normal’ and ‘what’s supposed to happen’ may imply a lack of choice, participants often expressed ‘wanting to’ and ‘feeling like’ giving back. For instance, Mokena commented: ‘Especially with my grandmother when we were young; she would always look after us as kids. She did it for us, and I feel like I would do it for them too’ (7Mo/42). Peti explained: ‘I just feel like looking after [Nan] shouldn’t be something that people should … put as much focus on. It was just something I did because I wanted to, so I don’t think it matters how you describe it to them. It wasn’t a task; it wasn’t a duty; it was just me looking after Nan’ (9Pe/88).
Ani described her purposeful decision to care for her parents: ‘I had made a decision that … I was going to make sure that [my parents] lived the kind of life they wanted to until they dropped dead … As the youngest, I wanted to give back’ (6An/3–15). By connecting the present to the past, Tiana downplayed care’s impact on her current life situation when considering her father’s lifetime of sacrifice: ‘I think to myself, am I doing the right thing? … Because this is just a moment in time, really, compared to a lifetime that’s he’s worked hard for me and my siblings’ (10Ti/50a).
Māori cultural values of whānau care: Participants normalised care by invoking relationships characterised by love (aroha) and nurturing care (manaaki). As Rangi explained, ‘[Our mother] loved us, and so we expressed that same love … When we’re in that energy of good vibrations with people and that aroha is strong, you stay there’ (5Ra/24). Here, the positive aspects of care (giving and receiving love) for the person cared for and carers are foregrounded and made possible because multiple whānau members (as indicated by ‘we’ and ‘our’) are involved. This collective effort is also evident in Rangi’s account of how other whānau members talked about her mother’s care. ‘A couple of my aunties [said] that my Mum was a very spoilt and well-loved woman because they could see the care that the children and grandchildren were giving [her] just at the marae [Māori community meeting place]’ (5Ra/22a).
Importantly, these excerpts suggest that nurturing care (manaaki) involves emotional and spiritual care within the relationship and extends beyond assistance with ADLs. Likewise, love (aroha) is expressed by being with (rather than only doing for) the kaumatua, supporting them to live their lives as they want and continuing in the spirit of positive whānau relationships. For example, Nia stressed, ‘Just being closer with Nan, so she has someone to talk to. She gets really lonely’ (8Ni/68). Tui also acknowledged the relationship with her nan (grandmother): ‘It was my kuia, my nan, my mum’s mum. She pretty much brought me up when I was younger … We had a very beautiful relationship my whole life’ (14Tu/7–15). Ani differentiated between nurturing her parents’ desired way of living and giving care within the relationship: ‘I supported my parents in how they wanted to view life, how they wanted to live their life, and I tried to make that happen, which is different from waiting on them hand and foot. That would be care’ (6An/33–39).
This comment underscores the parents’ and carers’ agency; care was not servitude. Thus, expectations and enactment of intergenerational reciprocity and collective whānau values of love (aroha) and care (manaaki) normalise whānau care. Intergenerational reciprocity may mean that decisions to care are unseen by some whānau. Even so, the positive emotional and spiritual dimensions of care are evident in the collective commitment to love and nurturing care.
Whānau care as collective coordination: ‘We’re all in this together’
This theme described how whānau organised care by coordinating various responsibilities across multiple individuals within a kaumatua’s support network at specific times to meet kaumātua needs. Although all support network members were expected to contribute, the first subtheme, care coordination’s complexity, shows that whānau carers had diverse understandings of what care tasks were needed. The second subtheme shows that care coordination extended beyond kin relationships. When care roles were not linked to kinship-relational roles, it was less obvious who was doing what. The third subtheme, care coordination holes, illustrates the impact of disconnections in the collective care network.
Care coordination’s complexity: All participants identified as ‘carers’ within the support network, but interpretations varied regarding what activities were needed. Mere understood care activities as including I/ADLs such as ‘daily things like cooking meals and taking care of the house, taking care of the financial side of things and visitors’. She also included relational activities like ‘sitting down and talking, having that closer relationship’ with the kaumātua. Yet, trying to ‘be everything to somebody’ was ‘hard at times’ (4Me/19–20). Here, Mere identified the challenge of juggling responsibilities, highlighting the importance of multiple whānau members taking on diverse care roles.
Care roles also included offering material support (e.g. financial and in-kind contributions). For instance, Rangi appreciated having ‘five awesome brothers … [who] would come in on a Friday night … chop a whole bunch of kindling, and wood … [for our mother and] stack the wood up to a certain height [to] last for the week’ (5Ra/44b). She also talked of her organising role in the whānau care system:
We had a book – a diary, and I used to ask my family to diarise Mum’s journey, but I was really checking what they were up to. Did you feed my mother? Did she eat? … Is she in a good mood? … We first put it into place to make sure that she was getting her right medication. (5Ra/64–82)
Sometimes, the primary carer coordinated other whānau members (e.g. Mere). In other cases, a designated ‘organiser’ took on this role (e.g. Rangi). Primary carers who also managed coordination found it challenging to juggle everything (e.g. Rawiri, Tui and Kara).
Care coordination extends beyond kin relationships: Role distribution did not depend on whānau members’ position within the broader social network or their familial relationship with the kaumātua receiving care (e.g. daughter, grandchild, cousin, niece). Participants with the same kin-relationship role often took on different carer roles. For instance, Maia, Peti and Hana were all mokopuna (grandchildren). Maia took on a primary carer role: ‘My grandmother was particular as with whoever touched her [for personal care] … So, it was always just certain people, and I was fortunate enough to be one of those certain people’ (1Ma/46b). Peti and Hana, in contrast, offered relational roles. Peti managed difficult conversations with her grandmother: ‘I was a big help because she was a very fussy person, so the chances of her listening to anyone bar me were quite slim’ (9Pe/18). Hana’s role in caring for her grandfather was more sporadic, as she would ‘just go in to give my mother a break for a day or two. … I’d just go and spend time with Koro. My relationship with him was really good’ (3Ha/18a). Yet, Tiana’s niece could not sit with her grandfather (Tiana’s father) for a few hours, despite their positive relationship and her training as a nurse. Tiana explained: ‘It was still hard for her. She only came for three hours so I could go out. … But when I got back, she was stressed because it’s her Papa [grandfather]. … I can’t expect them to come and care for him, but they can still visit him’ (10Ti/41–44a).
Mere described another possibility, that of a grandchild who supports the carer: ‘Although my youngest daughter lives here, she doesn’t have a role in [my father’s] care. She’s more a sort of support person for both of us. His everyday carer is me’ (4Me/4). The various care and support roles of whānau members increase the difficulty in identifying the multiple types of care surrounding the kaumātua receiving care.
Care coordination holes: Although most whānau networks coordinated care reasonably well, disconnections appeared at the centre and peripheries. For example, sometimes a primary carer at the care network’s centre excluded other support network members who would care for a kaumātua, even when they were over-stretched. Fortunately, primary carers could repair or plug care coordination holes. For instance, Peti, who initially referred to herself as ‘superwoman’, shared that she had to ‘shift from thinking “I can do everything for Mum”’: ‘I had to give that up, and … it was difficult, more so because I felt confident that I could care for her, and so I knew what to do, and I didn’t want to leave her to someone else who might not know quite as much as what I did’ (9Pe/68).
Whereas Peti had to decrease her vigilance, Ani commented on the relief she felt when she moved from saying ‘No thank you’ to acknowledging ‘I did need help and people would help’:
There was no judgement [from them of me], and it was just pleasure on the part of those whom I let help me … I thought, ‘Why didn’t you do this before, much earlier? Could have been a relief.’ … I found out what it was like not to be alone … and the huge amounts of love and respect they had for [my mother]. (6An/158–162)
Other participants mentioned that whānau members other than the primary care-giver contributed to creating care coordination holes. In some cases, whānau members seemed to contest their role in the care or support network. For example, when Kara, the primary care-giver, told her cousin ‘Your Mum’s health is not really great’, she was ‘fobbed off’ (her cousin sidestepped the issue) and realised that ‘they don’t want to know’ (1Ka173). Rawiri, another primary carer, also mentioned his cousins’ lack of support: ‘Our cousins would be a lot of help for me [if they came, because] a few times when I’ve been away, and I’ve come back home to find my uncle could have done with some help that day’ (11Ra/77). In another example, competing personal interests or lack of awareness of the kaumātua’s needs meant that other potential carers did not step in. Tui, another primary carer, mentioned her cousin’s refusal to help: ‘Me and my cousin began to fight a lot because I would need him to come and watch [Nan] so I could just do things like the shopping or go to appointments, … he’d rather go out on Friday after work’ (14Tu/17a). Refusing to help with caring for the kaumātua led to uncompleted care tasks and a breakdown in the support network’s functionality.
Whānau carer knowledge and needs as unseen: ‘You look okay’
Whānau inside the social network but outside the support or care network did not see primary carers’ need for self-care and thus did not always provide material and relational support. This ‘not seeing’ occurred because whānau within the social network knew who occupied the carer role but not necessarily what the role entailed. The first subtheme of ‘Whānau not realising the scope of care’ shows that care work specifics were often not (able to be) spoken about before becoming a primary whānau carer. The second subtheme, ‘Whānau not noticing primary carers’ knowledge and preferences’, concerns how whānau carers’ ‘knowing’ was not easily translated to other whānau members in the support network. The third subtheme, ‘Whānau carers’ needs as unseen’, refers to a lack of appreciation of carers’ need for self-care by whānau members in the support network.
Whānau not realising the scope of care: Several primary carers commented on their lack of awareness of what care work involved before becoming a carer. For instance, Maia said, ‘In my head, it was like just make sure Nan’s had a feed, and the telly’s on, the house is clean to her standard, and it’s all good. But, just the reality of that is so much more’ (1Ma/22). Likewise, Peti said, ‘I just had this idea that I could help her walk from A to B, help her get out of bed, make her bed, simple household chores. But it was more than that’ (9Pe/57). Phrases such as ‘I just had this idea’ and ‘the reality is so much more than that’ revealed the learning involved in taking on a carer role and the aspects of care unknown to those outside the role. Kara highlighted the dimensions of care that ‘nobody’ thinks of when she commented: ‘Layers come in, like the personal care, emotional care, nobody actually thinks about that … It’s not until you’ve actually been through it or you’re actually enduring it; it’s like “Wow this is it!”’ (1Ka198–201). Additional dimensions of care work were gradually accommodated so that they became normal and unlikely to be talked of. Hence, the primary carer’s specific tasks tended to be opaque to those not directly involved.
Whānau not noticing primary carers’ knowledge and preferences: This subtheme concerns how whānau members did not always appreciate the extent of whānau carers’ knowledge, experience and preferences. Some whānau members in the support and social network acknowledged that the primary carer had more knowledge of the care situation than themselves. Maia explained, ‘If there’s one person that sticks out in terms of how to care for someone, then most of the responsibility naturally goes on them because no one else really knows what to do’ (1Ma/62). In other situations, however, conflict emerged when the primary carer’s perspective was not given due weight or importance. Ani, for example, spoke of having ‘a falling out’ with a relative during a family meeting about the ongoing care of her parents. She said that although ‘the level of care was getting quite intense’, she had ‘categorically stated, “I don’t want [our parents] to go to [residential care].”’ Then, ‘[relative-in-law] walked out of the family meeting – total aggro [aggressive attitude]. I told [other whānau], “I don’t care; [relative-in-law] can stay out if [he/she] wants. I will deal with this with my [sibling]”’ (6An/116). In this situation, the ideas of a whānau member outside of the primary care situation did not align with the primary whānau carer’s desire to continue caring for her parents; she sought support, not substitution.
Whānau carers’ needs as unseen: Primary whānau carers talked about other whānau who dropped in to provide relational care or material support for the kaumātua, not appreciating the impact of the care demands on the primary carer. Tiana mentioned that her family, who did not see the behind-the-scenes work, thought her job was lightweight: ‘Of course, they thought “it’s easy, there’s not a lot to it,” but I’m on the phone all the time trying to sort things and arrange things and get in to see so and so’ (10Ti/93). Mere commented, ‘When you’re the carer, you can see so many things. When you’re on the other side of the fence, it just looks like “Oh well, they’re all right, she’s handling it”’ (4Me/121). Similarly, when Tiana’s brother arrived, he asked, ‘How are you? You look okay’ (10Ti/158). Such statements shut down opportunities to learn about the day-to-day support needs of the carer. Whānau carers found the ‘hidden-in-plain-sight’ nature of everyday care work problematic because their needs were not noticed. Rangi compared whānau care to what is ‘unseen after dark’ where visiting whānau members did not perceive ‘a normal night’s work’ (5Ra/118). Ani also commented: ‘[Others] don’t understand when you want a break, or you want to get out; it’s supposed to be sunshine and roses, and it’s not’ (6An/69). Another primary carer, Kara, referred to the differences in appearances and lived reality: ‘They would see Auntie [care recipient], and she’d be happy and stuff and she’d look all right, but they’d never ask [me], “Oh, how’s your health?”’ (1Ka/159–161). Comments like ‘they’re all right’, ‘she’d look all right’ and ‘You look okay’ indicate that whānau members outside the care network often failed to see beyond immediate appearances of coping; they did not probe further to promote meaningful exchange.
In these situations, whānau within the support network did not help the whānau carer to engage in self-care. Mere suggested that whānau ask questions like ‘How are things going? Do you need some help with something? Can we do this for you guys?’ (4Me/123). Instead, it often took a crisis for primary carers’ responsibilities to be apparent. For example, after ‘a really tough nine days’, Tiana received a text message from a younger sister: ‘I was thinking about you today, and I just wanted to see if you were okay.’ Tiana said she ‘cried and sent a sad face with a tear coming down, and then communication started’ (10Ti/108). Not knowing the extent of primary care tasks or noticing whānau carer needs meant that support for primary carers was reactive more often than proactive.
Discussion
This study, which focused on how Māori whānau members experience care coordination within a whānau collective, makes two key contributions to ongoing debates within the field of culture-centred social gerontology. Firstly, the locally grounded analysis of cultural norms surrounding whānau care-giving in Aotearoa New Zealand supports the idea that members of collective care systems within Indigenous and pluralistic family contexts comprising many carers face similar and different challenges to carers within systems with a smaller caring capacity. Similarities include the difficulty of coordinating multiple actors within the care network, network members’ divergent interpretations of what care-giving involves and the extent of unseen work carried out by primary carers (e.g. Akinrolie et al. Reference Akinrolie, Okoh and Kalu2020; Browne et al. Reference Browne, Mokuau, Ka’opua, Kim, Higuchi and Braun2014; Tang et al. Reference Tang, Chen, Chen, Ngo and Mattison2018). Differences relate to cultural values that influence willingness to move from the broader whānau network to take on a more defined carer role (Nikora et al. Reference Nikora, Karapu, Hickey and Te Awekotuku2004; Simpson et al. Reference Simpson, McAllum, Oetzel, Berryman and Reddy2022; Wiles et al. Reference Wiles, Moeke-Maxwell, Williams, Black, Trussardi and Gott2018; compare with Connidis and Kemp Reference Connidis and Kemp2008; Leopold et al. Reference Leopold, Raab and Engelhardt2014).
Secondly, the study suggests that carers in all contexts, including collective care systems, need multiple forms of support. Support can operate at multiple levels, including support for learning how to care (socialising potential carers as they take on the caring role), for coordinating care activities (ensuring care quality for the older adult) and for primary carers within a collective system, where their work and their self-care needs may be unseen (harnessing collective strength to bolster carer resilience). We explain how these dynamics played out in the findings by mobilising Keating’s (Reference Keating, Otfinowski, Wenger, Fast and Derksen2003) distinction among social, support and care networks. Social networks encompass all social ties and linkages, whereas support networks comprise a smaller subset of individuals willing to provide emotional and tangible aid to care recipients. Members of care networks, which are smaller than support networks, engage in the most frequent, intensive and extensive range of care tasks.
More specifically, the findings show that whānau care is highly valued and accepted as normal (Collins and Willson Reference Collins and Willson2008; Nikora et al. Reference Nikora, Karapu, Hickey and Te Awekotuku2004). Māori norms of intergenerational solidarity and reciprocity, the special status of kaumātua and expectations about the collective whānau care of them (Durie Reference Durie1999; Mead Reference Mead2003; Tate Reference Tate2012) make kaumātua and their care needs highly visible to potential and actual carers within the whānau social network. Indeed, whanaungatanga (relationships), where ‘individuals expect to be supported by their relatives [and] the collective group also expects that support and help of its individuals’ (Mead Reference Mead2003, 28), embrace social and support networks. Being part of the broader whānau social network creates an expectation that whānau will form part of the support network. Faced with kaumātua needs, participants tended to accept care responsibilities ‘naturally’ without a second thought (compare with Aasbø et al. Reference Aasbø, Rugk Asa, Solbrække and Werner2017). Within the dataset, there was often little talk within the whānau about which members would take on a care role. Consequently, whānau were unaware of the total weight of mahi (work) needed to care for kaumātua before starting out.
Yet, because whānau care is understood through the values of manaakitanga (nurturing care) and aroha (love), potential carers invoked emotional and spiritual dimensions of care when expressing their desire to accept the role. The positive sense of collective responsibility, care and love means that the collective care system is extensive (Goldman Reference Goldman2016) with whānau assisting with I/ADLs and providing relational and material support for their kaumātua (Nikora et al. Reference Nikora, Karapu, Hickey and Te Awekotuku2004). Whānau carer activities reflected the ‘catch-all roles’ (Nikora et al. Reference Nikora, Karapu, Hickey and Te Awekotuku2004, 51) that supported the whānau and the kaumātua in their care.
The second finding showed that, although caring for and by whānau was a norm, role allocation within the whānau varied. For instance, primary carers (Keating et al.’s (Reference Keating, Otfinowski, Wenger, Fast and Derksen2003) included adult children and grandchildren of kaumātua – some of whom worked together. Because care roles did not map neatly onto family role relationships, whānau members did not always understand how the support network was organised, leading to structural holes in care provision. Structural holes occur when individuals focus on activities within their groups at the exclusion of sharing information between groups, thereby creating gaps in information flow between the various groups (Burt Reference Burt2004). This finding resonates with Tang et al.’s (Reference Tang, Chen, Chen, Ngo and Mattison2018) study of coordination failures and fault lines in nuclear families. Yet, we contend that the likelihood of structural holes within collective care systems such as the whānau support network increases due to its size and heterogeneous composition. Although whānau relational bonds are often close, whānau carers may be only loosely connected through their care and support of their older whānau member. Often, only primary carers and care organisers (care network members) could identify individual whānau members’ contributions (Goldman Reference Goldman2016; Gutierrez and Ochoa Reference Gutierrez and Ochoa2021). Such gaps meant that over- or under-contribution became invisible to others within the support network.
Structural holes that prevent communication between whānau carers with complementary knowledge and experience of the care situation explain how whānau carers (e.g. assistants, helpers and monitors; Gutierrez and Ochoa Reference Gutierrez and Ochoa2021) act in information isolation without appreciating other whānau members’ care work. As a result, whānau carers experience stress and care activities may not be fully informed, although they aim to meet kaumātua needs. Another challenge related to the second finding was that role investment within the whānau varied considerably. Some whānau members chose a high level of involvement in the care network (e.g. primary carers), while others, who remained members of the kaumātua’s social network, did less than was needed. When these potential carers didn’t step into the support or care networks, the kaumātua needs (e.g. Rawiri) or the primary carer’s self-care (e.g. Tui) was negatively impacted. We suggest that potential care-givers who could have engaged in substitutive care but did not were unable to see care tasks performed out of sight, with negative consequences for primary carers.
The third finding demonstrated that whānau members outside the care network did not notice the specific content of primary carers’ knowledge, preferences or self-care needs. We draw upon the invisible work literature to explore how the ‘unseen’ shaped primary carers’ experience of care coordination within the whānau collective. Invisible work includes activities that are ‘unrecognised [as work], unaccounted-for or taken-for-granted’ (Vlasses Reference Vlasses1997, 1). Even though some care tasks (e.g. Tiana’s organising appointments and coordinating other whānau members) were invisible to the broader social and support network, primary carers were highly visible to those within the entire whānau network. Carers were not ‘invisible workers’ or non-persons (Poster et al. Reference Poster, Crain, Cherry, Crain, Poster and Cherry2016). Monitors and helpers could identify the primary carer(s) in the care system, but they were often unaware of the time and effort carers invested in assisting with I/ADLs, emotional care and coordinating others’ contributions unless primary carers confided in them.
Socio-spatial and temporal separation of care performed ‘after hours’ in out-of-sight, private and intimate spaces contributes significantly to care work’s invisibility (Hatton Reference Hatton2017). Indeed, even primary carers reported that, because initial care responsibilities tended to be less demanding, they underestimated the range of care tasks at the outset (Suchman Reference Suchman1995). This was particularly the case for tasks such as ‘organising work’ (Allen Reference Allen2014), coordinating (Tang et al. Reference Tang, Chen, Chen, Ngo and Mattison2018) or ‘articulation work … that gets things back “on track” in the face of the unexpected and modifies action to accommodate unanticipated contingencies’ (Star and Strauss Reference Star and Strauss1999, 10). In contrast, because all accepted the positive, relational aspects of care, helpers and potential carers often perceived primary care-giving as ‘easy’. Primary carers thus engaged in invisible work insofar as others defined their care work as simple, routine and easy, although it required considerable knowledge and skill (Nardi and Engeström Reference Nardi and Engeström1999).
Notably, a more expansive notion of care that foregrounds the cultural, emotional and spiritual dimensions of whānau care (see first finding) could reduce the recognition of the very real and tangible demands of physical care for the kaumātua (Macdonald and Merrill Reference Macdonald and Merrill2002). Invisibility based on lack of recognition had significant consequences for role allocation and care provision within the care system (Vlasses Reference Vlasses1997). Because whānau helpers within the support network often believed that primary carers managed the care network very well without them, care responsibilities were not always collectively discussed and allocated (compare with Katz and Lowenstein’s [Reference Katz and Lowenstein2002] ‘roundtable’ pattern). Instead, some potential carers who stayed on the fringes in the social network refused to contribute (e.g. members of Tui’s whānau; compare with Gutierrez and Ochoa’s [Reference Gutierrez and Ochoa2021] notion of ‘outsiders’). In addition, several primary whānau carers expressed difficulty organising substitutive care, where someone replaces the primary carer (Davis Reference Davis1997). Faced with the kaumātua’s evolving care needs, talk about care responsibilities was often conflictual (e.g. Ani; Aasbø et al. Reference Aasbø, Rugk Asa, Solbrække and Werner2017).
The third finding also indicated that some primary carers’ self-care needs remained unseen within a collective care system underpinned by norms of love, care and respect (aroha, manaakitanga, whakaute). This lack of attention to primary carers’ needs indicates that extensive ‘social resources that stem from family ties’ (Goldman Reference Goldman2016, 137) must be actively translated into supportive action for the kaumātua and those doing the heavy lifting. If latent ties within the social and support network are left to self-activate, the risk is that the norms of whānau care may inadvertently downplay the challenges when more support is needed.
Study strengths, limitations and directions for future research
This study’s strengths are twofold. First, its culture-centred methodology, evidenced by engaging Māori interviewers and designing data collection for culture-centred participation, helped participants feel comfortable sharing the well-functioning and challenging aspects of care coordination. Second, the study problematises and overturns the binary distinction between ‘collective’ and ‘individually oriented’ care contexts that appear in much work about care-giver socialisation and care organisation. Context, cultural or otherwise, will always influence the complexities and dynamics of family care-giving. The findings show that some members within the collective care system simultaneously recognised kaumātua needs (a more ‘collective’ orientation) and their own needs (a more ‘individual’ orientation). In addition to contributing to our understanding of in/visibility of care-giving and structural holes within extended and pluralistic family care systems, these findings have practical implications. Regular hui (meetings), where current and potential carers within large collective care systems can clarify roles, identify and allocate tasks, and offer and receive support, are essential.
One limitation was that, because most participants came from different whānau care collectives, it was not possible to access multiple perspectives or explore similarities and differences in the experiences of whanau carers within the same whānau care collective. Thus, future research may focus on the similarities and differences within Māori whānau. A second limitation was that we did not include the perspectives and experiences of living whānau care recipients (those well enough to participate) within a whānau care collective. Third, because our sample contained only two men, we obtained more insight into how women whānau members experience care coordination within a whānau collective. Future research could focus more directly on the impact of gender on the experience of whānau care. Fourth, we did not specifically ask about kaumātua health conditions. As some health conditions (e.g. dementia) discourage family members from providing care, future research may also incorporate care recipients’ health conditions in understanding how collectives negotiate family care. Such research is critical in the context of ageing populations where increased pressure is likely for families, community services and formal health support. Finally, in addition to studying strategies for bridging problematic structural holes in family collectives, it is vital to examine the transformative potential of caring for older family members in whānau and other family care collectives.
Conclusion
This study supports a Māori worldview of whānau care centred on kaumātua and carried out within care collectives built around aroha, manaakitanga and whakaute. The study highlights the existence of structural holes within collective care systems that prevent whānau carers from sharing their complementary knowledge and experience of the care situation. Such structural holes create obstacles to care coordination and the potential for primary carer invisibility. Addressing these questions will enhance whānau members’ ability to care for kaumātua, primary carers and each other.
Acknowledgements
The authors would like to thank the whānau carers for giving their time and sharing their experiences for others to learn from. Without their generosity, this study would not have been possible.
Author contributions
MLS and CU conceived the study, developed the research proposal and obtained funding to support it. MLS, CU, KM, TOH and AC developed the research materials and collected the data. MLS and KM undertook the qualitative analysis, with significant contributions from TOH, AC, SF and CU. TOH and AC provided specific topic-related expertise during the research. MLS, KM and SF co-wrote the manuscript with input from the other authors. All authors provided feedback on drafts of the manuscript.
Financial support
The authors thank the Waikato Management School (University of Waikato) for supporting this study through its Contestable Research Funds (2018).
Competing interests
The authors declare no competing interests.
Ethical standards
The University of Waikato Ethics Committee (reference WMS 18/38) granted ethical approval for the study.
Open access
