Whānau experiences of supporting a hospitalised family member away from their home base

ABSTRACT

In Aotearoa New Zealand, accessing the required level of hospital care can mean a patient is transferred away from their home base. Being transferred away from familiar surroundings inequitably impacts on people who live in rural areas, including Māori. During such transfers, whānau (family) of Māori patients who travel to support their unwell family member are also away from wider support systems. This paper presents the findings of 17 semi-structured interviews with 19 whānau from across the Central North Island region. Whānau discuss their experiences of being away from home and of providing support to their hospitalised whānau member. Our analysis draws out nuanced responses regarding communication of information and access to the wider service-scape. Experiences and challenges are discussed within a context of inequity, produced vulnerability, and the impact of distress and emotionality. Implications are considered in light of the global pandemic and recent health system reform, offering suggested ways to navigate Māori whānau remaining engaged in the care of their loved one during a hospital transfer.

KEYWORDS:

• Hospital
• Māori
• Indigenous health
• family
• hospital transfer
• whānau support

Introduction

In Aotearoa New Zealand (A-NZ), large tertiary hospitals are centralised in main urban centres. These public hospitals offer specialist services including Intensive Care Units (ICU), High Dependency Units (HDU) and major trauma services, and regularly receive patients in need of acute and/or specialist care referred or transferred from smaller, rurally-located care facilities (Masters-Awatere et al. 2019). The nature of A-NZ’s geography means transferred patients can travel long distances and be away from their home networks of support (Masters-Awatere, Cormack, et al. 2020). Māori are more likely to live in rural areas than non-Māori (Crengle et al. 2022). Subsequently, Māori patients are more likely to need to travel to access hospital-level care. Travelling away from home requires Māori patients and their whānau to negotiate distance, unfamiliarity, active engagement, and help-seeking while also maintaining social and relational connections with whānau at home (Brewer et al. 2012; Masters-Awatere, Murphy, et al. 2020). Leaving networks of support can be financially and emotionally difficult, with families reporting feelings of confusion, vulnerability, and increased instances of family turmoil (Mackie et al. 2014).

For Māori, admission to a public hospital in A-NZ has been associated with low-quality care (Jansen et al. 2009; Dew et al. 2015; Rahiri et al. 2018; Palmer et al. 2019), does not result in increased access to health interventions (Bolitho and Huntington 2006; Jepsen et al. 2018), and can increase the risk of adverse outcomes such as disability and death (Davis et al. 2006; Rutter and Walker 2021). The presence of whānau mediates and reduces negative health outcomes for Māori in-patients (Graham and Masters-Awatere 2020). Whānau members of an admitted Māori patient provide emotional and practical support (Arlidge et al. 2009), including but not limited to, translation services (Pitama et al. 2011), advocacy for their family member (Wepa and Wilson 2019), and are central to ensuring adequate after-hospital care (Stevenson et al. 2020). Additionally, whānau support can act as a protective buffer towards ongoing colonial practices (Moewaka Barnes and McCreanor 2019), adverse impacts of historical trauma (Wirihana and Smith 2019), and contemporary discrimination in healthcare (Cormack et al. 2018). However, providing support comes at significant cost for whānau, financially (Gott et al. 2015) and emotionally (Gaab et al. 2013).

Whānau are recognised by the Ministry of Health as ‘a principal source of strength, support, security and identity’ (Ministry of Health 2014, p. 1). For Māori, whānau is a ‘way of living and organising the social world’ (Smith 2021, p. 18), and is central to the wellbeing of Māori individually and collectively (Durie 1994). Conceptually, whānau refers to ‘relationships unified around collective responsibility and shared vision, which may or may not involve shared whakapapa (genealogy)’ (Carlson et al. 2022, p. 412). Definitions of whānau fluidly incorporate kinship relationships and include close friends and work relationships (Cram and Kennedy 2010). The fluidity of conceptualisations of whānau contrasts with the Statistics New Zealand definition of a family nucleus as being ‘A couple, with or without child(ren), or one parent and their child(ren), all of whom have usual residence together in the same household. The children do not have partners or children of their own living in the household’ (Statistics New Zealand 2009). These differing understandings of family (and which understandings are prioritised in policy-making) have resulted in whānau-related support being devalued by colonial-based systems and structures; hospitals being one of those such systems.

The built hospital environment and associated systems for healthcare in A-NZ reflect biomedical models of medical practice originating from colonial approaches to health (Waitangi Tribunal 2001). Such models prioritise clinical access to patients, prompt turnaround of acute care, resulting in rationing of resources available to patients (Walker et al. 2008). Access by family members to patients can be limited, with access dependent upon, and organised around, medical care resulting in differing visitation schedules across departments (such as intensive care, oncology, maternity). There is limited local research on the impacts on whānau when providing support to an unwell family member admitted to hospital and transferred away from their home base.

This paper presents our research with whānau members of a Māori patient, where the patient was transferred to a hospital away from their home base. In particular, we were interested in whānau experiences and how they remained involved with care for their unwell family member, the challenges faced, and facilitators encountered. At the time of the study, system-led services were delivered by district health boards (DHB’s). While there has since been an organisational change to service delivery at the government level, DHB structures continue to operate at regional and district levels while changes are made.¹ These findings are discussed within a wider context of a health service-scape that is historically hostile towards Māori patients and whānau involvement. It is timely to consider the specific experiences of whānau during away-from-home hospitalisations in the context of the ongoing Waitangi Tribunal Health Services and Outcomes inquiry (Waitangi Tribunal 2019) and the health system changes being implemented.

Materials and methods

Our research method was underpinned by a Kaupapa Māori (KM) theoretical and methodological approach (Smith 2021). This approach to research centres Māori aspirations, values, beliefs, and experiences throughout the research process (Pihama et al. 2015; Curtis 2016). The project was designed and led by Māori researchers who embedded levels of accountability throughout the project between participants, stakeholders, and the research team. Subsequently, we clearly identify the positionality of the team: Bridgette Masters-Awatere (Te Rarawa, Ngai Te Rangi, Tūwharetoa ki Kawerau); Donna Cormack (Kāi Tahu, Kāti Mamoe); Rebekah Graham (Pākehā); and Amohia Boulton (Ngāti Ranginui, Ngai Te Rangi, Ngāti Pukenga, Ngāti Mutunga). Doing so explicitly identifies Indigenous (BMA, DC, AB) and non-Indigenous (RG) team members. Taking a KM approach enabled the research team to contextualise analysis and interpretation of data within wider understandings of complex hospital and surrounding environments. Aligning with consideration of structural factors (Smith 2021), the research emphasis focused on supporting change and improvement at a systems level rather than directing the attention to ‘fixing’ the patient and their communities (Palmer et al. 2019; Masters-Awatere et al. 2017; Masters-Awatere, Murphy, et al. 2020).

The interviews that are the focus of this paper were part of a broader study, the Hospital Transfers project, which has been described elsewhere (Masters-Awatere et al. 2017; Masters-Awatere et al. 2019; Masters-Awatere, Cormack, et al. 2020; Masters-Awatere, Murphy, et al 2020). The analysis for this paper considers the 17 interviews (involving 19 people) undertaken with whānau members of a Māori patient admitted to hospital within the Central North Island region. A key aspect is that patients and their whānau had been transferred or admitted to a hospital that was away from their home or usual place of residence. Recruitment of whānau members involved posters and social media, hospital notice boards, and email, as well as word-of-mouth; the latter being observed as the most effective recruitment method. Whānau members who participated ranged in age from early twenties to over eighty and included both men and women, and Māori and Pākehā (New Zealanders of primarily European descent) whānau members. One patient involved two separate interviews with whānau members, and another interview was conducted as a group with three whānau members of the patient present. All other interviews were conducted individually.

Interviews were conducted over a 4-month period during 2018 and undertaken either in-person or via telephone at the whānau member’s request (due to travel time and geographical distance from the interviewer). Reflection of interview processes and discussion about potential findings occurred between research team members after each interview. This reflexive process meant the research team could flexibly respond to findings and elicit increased depth of sharing through adapting the interview process (e.g. adjusting the order or framing of questions). Interviews were transcribed and used in the analysis. Ethical approval for this study was initially granted by School of Psychology (16:63) then ratified by the Human Research Ethics Committee Health (2017–20) at the University of Waikato. A dual process of approval was the result of disestablishment of the first committee. Additionally, because the research was co-lead by researchers at different academic institutions, approval granted by the first institution had to be ratified by the second. Approvals were subsequently ratified by the Auckland Health Research Ethics Committee at the University of Auckland.

Our analytical approach took a combined thematic analysis and KM orientation. Firstly, the team discussed how they would engage with the transcripts. From here, each team member examined one transcript and identified potential themes. Transcripts were then allocated to team members where they independently coded their allocated transcripts utilising thematic analysis (Clarke and Braun 2017). A collective discussion was undertaken regarding potential themes, including revisiting the research corpus as a whole. This iterative discussion process (Mbuzi et al. 2017) occurred throughout the analytical process and centred KM perspectives throughout. Robust discussion and examination of interview transcripts occurred, and decisions were reached collectively; that is, discussion continued until there was collective agreement from the research team. The key themes from the whānau interviews are presented in this paper.

Findings

Our analysis identified two core themes; communication of information, and access to DHB-led supports. These core themes and sub-themes are presented in Table 1.

Table 1. Core and sub themes.

Core themes	Sub-themes
Communication of information	System-based challenges
	Translation challenges
	Whānau-to-whānau communication
	Positive experiences
	Impact of poor communication
Access to DHB-led supports	Transportation
	Financial costs
	Accommodation
	Psychosocial support services
	Impacts on whānau

Communication of information

Communication is a critical component of ensuring patients remain informed throughout the transfer process. This study brought to light a range of communicatory issues which highlight the need for a nuanced understanding of how information is communicated to Māori patients and whānau during a hospital admission.

System-based challenges

Whānau observed that while individual conversations with hospital staff may be positive and inclusive, the hospital care system works against inclusion. The following reflection from Whānau#5 notes this difficulty:

I think in terms of Dad’s care, the whole system itself doesn’t really let you actively participate in their care. You are just kind of bystanders to it all, because it all happens to you. It is not a process of with where they consult you really, they get your consent for things but you are relying all of that time on their expertise to do the right thing. (Whānau#5)

Additionally, whānau mentioned being unsure of what they were ‘allowed’ to do, leaving them feeling unsure as to how to best support their hospitalised family member. For example, Whānau#11 described how their family member was on morphine and not always able to remember what clinical staff had said during their rounds. There was some uncertainty around knowing what their rights were as a support person in the unfamiliar space of a hospital environment. Participant responses captured the nuance of hospital environments each having their own systems and processes, meaning familiarity with local systems did not necessarily translate to the transferred hospital. Whānau#11 explains:

It will be good for them to just let the support people, or at least the patient know what they are entitled to over that period … If they could let the support person know – OK, it is alright for you to come at such a time to listen to the doctor speak to the patient and those sort of things. It is just the uncertainty of not actually knowing whether we were allowed to be there. (Whānau#11)

For Whānau#5 and Whānau#11, their experiences of being alongside their unwell family member were textured with worry and uncertainty around their loved one’s wellbeing. It was while reflecting on their experiences in the hospital ward that they were able to articulate nuanced responses whereby communication was part of a wider experience of feeling out-of-place and superfluous to hospital routines.

Translation challenges

One participant described having to act as translator for her grandparents, whose first language is te reo Māori. This whānau was not offered Māori language translation services. It is unclear if this is due to unavailability of translation services or if hospital staff assumed there was no need due to the whānau member providing this service gratis. Whānau#4 expands below:

In the old days my grandfather couldn’t communicate with [hospital staff]. I was his communicator. So if they [staff] wanted him to take pills, I used to tell him to take pills. In the old days our koroua (grandfather) and our kuia (grandmother) were never ever left without a mokopuna (grandchild) at the hospital in my family, and I was it … I’ve looked after 10 cancer patients … Sad for me and draining … But as a young person I’ve had to do it since I was young … [my koroua says] Tell them, no, no I don’t understand, wait for my moko to come. (Whānau#4)

Translation took multiple forms including translating medical language into words and phrases that other family members could understand. This communication need is further expanded on by Whānau#5:

Our Dad, he was very adamant that we had to be there every day … just in case the doctors came. He was really anxious about not fully understanding. My Dad is not dumb. Dad has a masters. But it was just the health speak and the way in which they deliver things. They speak fast, they’re from another country, they have no kind of culturally responsive way of working with our Māori whānau … I suppose [it was] that determination to be like an interpreter or a translator of the medical people … I can challenge and articulate questions around why is that, or what is that, we don’t understand that, explain that please. Being able to look at my Dad and to read his body language and everything and be able to navigate through those medical professionals. (Whānau#5)

Here, Whānau#5 articulates the value of whānau support as a requirement for effective communication, and the anxiety felt by their unwell family member when they could not reliably understand what the clinical staff were saying. They also comment on body language and non-verbal forms of communication thus engaging in multiple forms of translation. Not only are they interpreting what the clinician is saying, they are watching the patient, interpreting their body language, and then translating the patient's response to clinicians. These types of translation of non-verbal communications are crucial for patient well-being (Shahid et al. 2009).

Non-verbal forms of communication also occur between clinicians and whānau. Differing cultural approaches to care and expectations regarding the presence of whānau are communicated in verbal and non-verbal ways. Whānau commented on feeling unwelcome and out-of-place as they picked up on body language and other non-verbal cues from hospital staff. Some whānau described being explicitly and directly asked to leave the hospital room. Whānau#7’s experience was of being actively excluded from their unwell family member’s care. This brought distress to both themselves and their family member:

We went outside and I’m just sitting there crying because this [being asked to leave] would never happen in my own rohe (region). We know how to work the system there. We were in a foreign area that I’m not used to … that is part and parcel of us coming from a smaller rural area. We are not confident in those institutions … You are feeling like a number … when it comes to our relationship, we are a huge help to Dad’s wellness, because not only does he get quite anxious, but we pep him up in different ways. He sees us walking through the door – you can see the sigh. The sigh of relief, they’re here now. (Whānau#7)

Here, Whānau#7 notes the emotionality of their experience, the difference in systems across hospitals, and how being physically present provides emotional support. Similar to Whānau#5, Whānau#7 mentions body language and non-verbal forms of communicating. Implied in the conversation is that whānau felt that hospital staff were unaware of the ‘sigh of relief’ expressed by the patient.

Whānau-to-whānau communication

Information and services that were of benefit to whānau members were communicated via whānau conversations or accumulated through repeat admissions. These occurred organically, in an as-needed and supportive manner. Whānau#3 describes below their observations of families arriving at the ICU:

When families come into ICU, they are not really told what is happening in there. We joked about it afterwards, the families that have been through a long time, we would go to the families that had arrived because they had that look on their face – it was the new arrival ICU fear and worry and not knowing when they could go in or how many people were allowed in. You have to just work it out yourself. (Whānau#3)

Whānau#3 went on to describe ‘long-term’ whānau members providing ‘awhi’ (support) towards new and incoming families. This included practical advice about car-parking and where the toilet facilities are located, as well as offering emotional support and care:

I would say that I believe that everyone who gets to intensive care is a special person because a lot of people don’t make it. It is a big hurdle to actually get there. You try and encourage the people that are there that they’ve made it to this part. (Whānau#3)

This form of whānau-to-whānau (peer-to-peer) support was mentioned across interviewees as a key means of navigating hospital systems. For whānau whose admitted family member was in the ICU, the focus on clinical care and making difficult decisions took priority. This sometimes meant that the more general information regarding navigating administrative systems was not front of mind. Whānau-to-whānau information-sharing typically occurred relationally, in a supportive and whānau-centred manner. That is, ‘chunks’ of information were shared in a non-overwhelming manner, as and when whānau were ready to receive the information.

Whānau#3 noted the value of manaakitanga (kindness, hospitality) and of having face-to-face contact with a welcoming and knowledgeable person:

I think there probably just about needs to be someone there to welcome people … There is the receptionist but during the night the receptionists aren’t there, you press a bell. It is quite difficult. There are people there that English isn’t their first language and things, and they are just absolutely lost … It is not about welcoming. Yeah, it is a little bit about welcoming. (Whānau#3)

Woven into these challenges with welcoming new whānau into the hospital space during night-time hours is the reality that many whānau are themselves in shock, traumatised, and deeply concerned for their admitted whānau member. Transfers can occur due to emergency situations, meaning that the Māori patient and their whānau arrive outside of the regular reception/staffed hours. Additionally, the timing of when information is shared is important. Sometimes information was offered at a time when whānau members were highly stressed/unable to absorb additional (new) information. For example, Whānau#9 describes being offered counselling while she was still deeply concerned for her family’s physical well-being:

Yeah, there was a lot of services. There was a trauma, there was the cultural, church and like there was quite a lot, but at the time we were not interested. I said I won’t need any of this counselling or any of those services until I know that my whānau are alright. That is what matters at the moment. (Whānau#9)

Positive experiences

Whānau members deeply appreciated clinicians and hospital staff taking time to answer their questions and explain in language they understood. In the example below, the participant valued receiving direct answers to questions about their family member:

The staff were onto it, but because it was intensive care it was two people at a time and everybody in there was sedated and they are saying, just letting us know that everybody in there was sedated … They let us know about how our whanaunga (relative) was doing and that he was a bit touch and go. We were all goods … When I was there, I asked about had he been in and out of consciousness. They were taking him off the sedation medicine, so he could start breathing on his own. The staff were quite open about that. I don’t know if some of the information they gave us if they were allowed to give it. But we asked the questions and they were answering them. (Whānau#6)

Having positive communication and high-quality information also meant that wider whānau were adequately informed: ‘they [hospital staff] informed my sister and [patient] whānau members.’ (Whānau#14). In contrast, Whānau#8 described challenges with clinical staff and finding it difficult to understand what they were being told:

I think more clearer information and the doctors speaking to you like a person and not a medical book … They would just use all the big words, like I don’t understand it and I’ll tell them I don’t understand it. They would pretty much leave and the nurse would come in and simplify it … It is just them talking to you like a person and not using the medical terms to some people, you know, because we don’t know. And being more supportive with whānau being there. (Whānau#8)

Inconsistent mechanisms for sharing information and the difficulties whānau faced in accessing reliable and up-to date information was perceived as information being hidden from them. However, where high-quality, clear communication occurred, this benefitted whānau. In particular, high-quality information alleviated the distress and anxiety faced by whānau members who lived some distance away from the hospital and were unable to be there in person to offer support.

Impact of poor communication

Similar to Whānau#8, other participants noted challenges with understanding clinical language and not always understanding what was meant. The uncertainty of when the clinicians would ‘do their rounds’ contributed to this sense of frustration. Alongside this, participants noted confusing and contradictory communications about discharge. This is exemplified in the following quote from Whānau#11:

they just dropped off the paper to her the next morning after her surgery and said you are free to go home whenever you are ready. I was like “oh”. She rung me up and she said, “you can come and get me when you are ready because I’ve got my prescription to go home and we’re ready to go home as soon as you come and pick me up.” So that was about that. (Whānau#11)

Sometimes poor communication around discharge resulted in paperwork being incomplete and incomplete prescriptions for needed medications. Whānau#7 described a situation where a nurse forgot to include an additional prescription in the discharge papers. Not only did their unwell family member have to ask for their prescriptions to be included, but additional paperwork was not included. In the following exchange, Whānau#7 recall the confusion around ensuring correct medication upon discharge:

But on top of that, Dad, remember [the nurse] eventually gave you the prescription and then we walked out and we had to wait at the chemist to get your meds. And then [the chemist] said to you “these are controlled drugs, where is your other slip?” Remember that part? … These are controlled drugs, you need your second slip – what is that? You need another piece of paper to consent to authorise the controlled drugs … you had to go running back to the ward again to get that second slip. (Whānau#7)

The lack of clarity and poor communication around discharge processes left whānau feeling as though their health needs were unimportant and that their recovery was of little consequence to hospital staff.

Access to DHB-led support services for whānau

This theme considers whānau experiences with transport (e.g. rural buses, ambulance, onsite parking), financial costs, accommodation (e.g. on-site venues, funded stays), psychosocial supports (e.g. social worker, Kaitiaki²), and the over-arching impact on whānau of providing support for their hospitalised family member.

Transportation

Depending on the nature of admission and the distance to the hospital, DHBs have access to multiple modes of transport for patients (e.g. helicopter, ambulance, taxi, shuttle bus). The implications of transport for the patient are discussed in other publications (Masters-Awatere et al. 2019; Masters-Awatere, Murphy, et al. 2020); the focus of this paper is whānau experiences. Whānau members offered detailed reflections of transfers via personal vehicle or ambulance. Transport via ambulance, under certain circumstances, meant whānau could travel with the patient or follow in a personal motor vehicle. Sometimes whānau preferred transport in their own vehicle to ensure feelings of comfort and to reduce anxiety. Whānau#1 explain:

The doctor strongly recommended that she get to [hospital] and offered the ambulance or we [could] transfer ourselves and we took her ourselves. Cause it is familiar and I can’t imagine her wanting to get into the ambulance … even though the doctor at the time [GP] offered the ambulance, I knew that that wouldn’t be the mode of transport mum would agree to, so I had to think fast for a mode of transport so that’s where the extended whānau came into play. (Whānau#1)

Whānau#1 acknowledge the contributions of the wider whānau unit in providing appropriate care for their unwell family member. They also prioritise the patient’s mental and psychological comfort alongside their physical needs. This form of care can be misinterpreted by clinicians unaware of the anxiety and fear that travelling in an ambulance can bring for Māori patients.

Another whānau described at length the challenges ambulance staff faced when attempting to transfer their family member, who was highly anxious about dying. The whānau had two close family members pass away. These deaths remained front of mind to whānau and to the patient during two transfers within four days for the same heart-related issue. The cumulative effect of these experiences heightened feelings of ‘going to hospital to die’. Below, Whānau#7 describe the challenges for transfer personnel due to the patient being isolated from whānau during the transfer process:

They [the ambulance] had to pull into Tauranga to that hospital to calm him [family member] down with medication, because it [the thought of going to hospital] was working him up again. He was panicking – why? Because he couldn’t see his whānau driving in the vehicle behind him. He was panicking about, oh my god, this is it, I’m on my way out again. (Whānau#7)

Similar to Whānau#11, Whānau#7 were able to provide care beyond physical needs. In this case, whānau knew that their family member required support to alleviate anxieties and concerns related to recent losses and grief. In the next quote, Whānau#7 expand on this theme to include dignity:

They [ambulance staff] offered [a seat] and we said no because Dad has a mimi (urine) bottle and he is on [medications]. It is not going to be good to us. We don’t sit there when Dad is trying to mimi. He has anxieties having a mimi in the bottle with the curtains closed; let alone with other people sitting around him, so it wasn’t appropriate that we hop in [the ambulance]. (Whānau#7)

This example highlights again that whānau understand care to be more than physical provision, IV lines, or speed of transport. Whānau implicitly valued their family member’s comfort, acted to alleviate psychological distress, and protected the patient’s dignity. The experiences of these whānau exemplify wider experiences of transfers and use of ambulance services. It is care for the whole person that underpins the rationale for choosing transport such as private motor vehicle over ambulance-related travel.

Financial costs

The financial costs of transport were widely discussed. This included petrol but also fees associated with ambulance travel. The lack of clarity regarding costs of ambulance transportation meant that subsequent invoices came as a surprise. An away from home admission (via ambulance) incurred a charge (i.e. the patient lives within the DHB boundary), while an inter-hospital transfer (i.e. between hospitals) did not:

It costs like $80 bucks to go to the hospital from here on an ambulance, or anywhere … they don’t tell you that you have to pay for an ambulance … my mother, had to take her up on an ambulance and we got a bill. (Whānau#10)

Fees were also associated with use of a private motor vehicle, with whānau identifying daily parking changes ranging from NZ$7-$35. These costs sometimes resulted in whānau parking long distances away, which was problematic when elderly or less-mobile family members were in the vehicle. Whānau members also expressed frustration at absent signage, not knowing where parking was located, and not knowing what parking was available for whānau of patients who had been transferred from another DHB area.

One inexpensive transport option mentioned by whānau participants was the hospital shuttle/rural bus service that operates within the DHB boundary. Whānau became aware of the shuttle service via brochures and/or peer-to-peer conversations, ‘it was just because of the brochure that I found out about it. No one had said it or told me … being told what’s on offer would be helpful.’ (Whānau#2). It was unclear whether information about patient transport services (shuttle/rural bus service) was shared with patients, rather than with whānau support, or if it was assumed that whānau ‘just knew’. Other whānau members knew about the rural bus service but were reluctant for their family member to use it, due to the nature of their illness:

Because [patient] was going on the bus, since I’m taking care of her I won’t take her on the bus because she has blank seizures and I’m scared that she will have a seizure on the bus and people don’t know what to do. (Whānau#12)

This sense of care for their unwell family member goes beyond merely getting the patient to the hospital but instead reflects the previously discussed values of dignity and care for the whole person. The form and manner of transportation reflects a wider sense of care of ensuring that their family member has dignity and respect throughout all interactions associated with hospital visits.

Accommodation

In most DHBs low-cost, short-term accommodation is available for whānau who are supporting seriously ill patients and who have travelled a long distance (more than 100 km) to do so. The location and management varies. For example, in one DHB a stand-alone house is available for whānau.³ This accommodation has a Māori name and its description conveys Māori cultural values of manaakitanga. The house was utilised by two separate whānau participants. While each whānau initially appreciated this accommodation option, they each chose to leave the service, despite their family member remaining in hospital. During interviews, this was attributed to the provided accommodation not meeting their particular set of needs:

They [accommodation service] need to get one person to be able to communicate properly with the hospital and get it [accommodation] ready for the whānau that goes into the hospital. They need to have care … It is the same thing at the hospital. The hospital is working at the front, but they’re forgetting about the support unit. (Whānau#4)

For this whānau, their expectation was of wider social support beyond their housing needs. Their experience contrasted with the values conveyed in the name. Similarly, the quote below reflects how a whānau had anticipated being warmly welcomed but felt hurt when treated as a burden:

There was no sense of manaakitanga … it was very transactional … it was really strict about daily payment … You kind of think in those spaces when whānau are there to support whānau who are not well that, you know, there has to be some level of flexibility and understanding and empathy on what is happening. There was none of that … It was not very nice. (Whānau#5)

For both sets of whānau, their unspoken need during the time of hospitalisation was for social support and for whānau-to-whānau conversations, advice, and sharing. They had hoped this would occur organically as a result of staying in accommodation ‘managed under a Māori Kaupapa philosophy’.⁴ The unmet expectations of manaakitanga left whānau feeling alienated and out-of-place. Subsequently each whānau left the accommodation earlier than anticipated in order to find more welcoming spaces.

Psychosocial support services

DHB’s provide access pathways for wider psychosocial supports, including social workers, Kaitiaki, and services delivered by external community groups. However, awareness of, and access to, different forms of psychosocial services during a family member’s admission varied. Whānau#14 described finding counselling support for the whānau support person post-admission ‘We stepped in as a whānau and got [whānau member] … you know, when she had sort of caught her breath, to see someone. But that wasn’t really offered.’ In contrast, Whānau#10 was offered support regularly, ‘I haven’t asked for their service yet, but a couple of times someone has come in and asked if I needed anything or stuff like that.’ This form of ‘checking in’ was appreciated, even if services were not utilised.

Whānau shared their frustrations regarding absent supports, but, when reflecting on their experience with the interviewer, Whānau#5 acknowledged that they may not have been listening when the services were offered. Whānau#15 recognised they may not have felt the proffered services were required at the time. Whānau#9 felt they may simply have not wanted to engage at the time. The timing of when offers of service or support were made was important. When support services were presented during the initial hospital admission process, this information conflicted with the more immediate whānau priorities of supporting their severely unwell family member through the admission process. Whānau#9 recalled conversations offering access to a range of support services for relevant needs:

There was quite a lot [of services offered] but at the time … I was just like, oh no I can’t be like worrying about myself when my family are actually the ones that are hurt inside the hospital, so I waited until they all got better, or at least we find out exactly what is going to happen and then. But I did take their cards at the time. (Whānau#9)

This quote reflects similar sentiments shared in the previous theme. It is not necessarily that whānau members did not want support, but rather that support may have been offered at an inappropriate moment for whānau as cognitively their attention and energies were taken up by dealing with the immediate issues surrounding the health of their family member.

One of the support services specifically available to Māori patients and whānau at Waikato Hospital is a cultural support service, often referred to as Kaitiaki. This service has a team dedicated to supporting Māori patients and whānau. However, for the majority of whānau in our study they reported not seeing or having interactions with Kaitiaki: ‘They don’t really come around much. I don’t think I’ve seen them’ (Whānau#12). Other whānau thought that a heavy workload was a factor, ‘You’re very lucky if they actually come to see [you], because maybe they’re too busy’ (Whānau#4). In contrast other whānau noticed the Kaitiaki ‘roaming around’ (Whānau#16). Despite their negative observations, both Whānau#4 and #16 found the Kaitiaki helpful when they chose to submit a complaint to the hospital.

Psychosocial supports also include social workers and government agencies. Agencies specifically mentioned by whānau include Accident Compensation Corporation (ACC), Work and Income (WINZ) and Child Youth & Family Services (CYFS). Responses to engaging with government agencies varied. Whānau#16 commented ‘ACC actually come in and had a hui at the bedside sort of thing, which was good.’ Whānau members were highly cautious about speaking to hospital social workers due to perceptions of connections with CYFS/OT; ‘[social workers] are connected with CYFS as well, so you’ve got to watch who you are talking to’ (Whānau#13). CYFS/OT have the statutory power to remove a child from their family, including during a hospital admission (Kaiwai et al, 2020). During interviews, Whānau#13 and Whānau#4 both recollected their experiences of dealing with CYFS/OT, including threats of child removal and recollections of whānau members who had an infant removed from the hospital ‘They never even asked for her milk when they [CYFS] took them away from the hospital’ (Whānau#13). The trauma from these experiences reverberate across whānau lines and leave whānau with a deep distrust of social workers and associated social services. The removal of a child is a traumatising event for whānau (Pihama et al. 2014) and adds another layer to whānau engagement (or lack thereof) with proffered services.

Impacts on whānau

Whānau members placed very high expectations on themselves to be constantly available to their admitted family member. Whānau spoke of not wanting to leave their family member alone at any time, and of the need to be always present, no matter the cost. Sometimes this pressure was external, as exemplified in the below quote:

[hospital staff] asked one of us family members if we could watch [the patient], or they would get an orderly in or somebody else to look after her. We said, “yep, we will do it … we were asking “is this 24hours?” And they said, “yes it will be”. (Whānau#9)

Over and above those expectations whānau sometimes placed additional conditions upon themselves in order to reduce placing perceived stress upon the patient, as described below:

She was nil by mouth. I just sort of tried to support her as much as I could. The only time I would sort of duck away to have something to eat is if she was having a sleep … I didn’t really want to be eating while she wasn’t allowed to. (Whānau#11)

As discussed in the introduction, the presence of whānau is a mitigating factor for health inequities during a hospital admission. It is possible that the combination of this knowledge, along with experiences of poorly communicated supports, worry for their unwell family member, and untrustworthy social services leads to a collective sense of needing to always be present. Being away from home exacerbates a sense of needing to be present for their whānau member as a patient in a hospital away from the familiar community in their hometown. Comments from Whānau#2 highlight the range of helpful areas those providing support to loved one’s felt they would have liked to receive from hospital staff;

[hospital staff] probably could do more in terms of letting people know about the services on offer, like the transportation or I don’t know if there is financial help that you can get. Accommodation when you are staying away from home and even home help and home care and stuff like that. So those are all things that I think would be really helpful that I don’t think now that we have like talked about it were actually explicitly offered to me. I ended up finding out in a roundabout way. (Whānau#2)

Discussion

Whānau efforts to remain nearby and engaged in the care of their loved one highlight the complexities they navigate beforehand (during transfer to hospital), during (while in hospital) and afterwards (such as accessing medication upon discharge and arranging transport home). Whānau frustrations with hospital services generally stemmed from uncertainty, a lack of familiarity, or stressors associated with the hospital admission. Despite the uncertainty, whānau acknowledged when hospital services were received favourably and articulated when supports were not well received or accessible, leaving them feeling under-served.

Access to, and understanding of, timely delivery of information to whānau members of a hospitalised patient is important (Wilson and Barton 2012). Whānau equate inadequate access to information and poor communication to inferior quality of care (Robson and Reid 2001; Blume et al. 2014), and miscommunication is linked to patient harm (Māuri Ora Associates 2008). Nevertheless, communication of timely and accessible information remains an ongoing challenge for hospital staff (Jansen et al. 2009). Complicating this process is that whānau and patients alike are under duress, meaning that facilitating communication requires additional attention to details such as body language and timing of delivery (Māuri Ora Associates 2008). Effective communication with people under duress requires ongoing conversation, gentle reminders, being aware of body language, and breaking information into ‘bite-sized’ chunks. Whānau in the study also noted the value of sharing written instructions alongside in-person conversations to facilitate easy recall of information later on.

The perception among whānau that inadequate and/or ineffective communication strategies was ‘information being hidden from them’ challenges popular (mis)conceptions about Māori health literacy. The failure of hospital systems to adequately provide for Māori whānau has led to a lack of trust and engagement (Arlidge et al. 2009; Dew et al. 2015), and to Māori patients and whānau feeling disconnected from information and advice provided (Bolitho and Huntington 2006; Masters-Awatere et al. 2019). Health literacy programmes designed to address this disconnect have typically relied upon Western models of promotion and education, been focussed on individual behaviour change (Kendir and Breton 2020) and have not adequately addressed the social determinants of health (Chinn 2011). Deficit-based approaches to health literacy frame individuals as lacking in knowledge/skills and minimise the systemic barriers that preventing individuals from accessing healthcare services (McCormack et al. 2016). In contrast, we recommend implementing literate health systems that draw on multiple forms of communication and information sharing (Ministry of Health 2015). We also recommend (re)conceptualising health literacy in socio-economic contexts, and political environments, power relationships and subjective experiences (Estacio 2013).

The ability of whānau support to be present and involved in the care of their whānau member was important and appeared to make a critical difference to the hospital experience. Whānau met gaps in system resources or competencies, such as providing translation services for te reo Māori-speaking patients. Māori patients were able to focus on healing because a whānau member took responsibility for listening to clinical staff explanations, requested additional resources and supports, or shared medical details with wider whānau networks. Whānau narratives highlight the important roles whānau fill as sources of strength, support, security and identity that are central to Māori wellbeing (Ministry of Health 2014; Smith 2021). Just as the role of whānau was being recognised in hospitals, a global pandemic disrupted changes taking place.

The COVID-19 pandemic disrupted health services and the ability of whānau to be with their loved ones during a hospital admission (Rosenbluth et al. 2020; Goldschmidt and Mele 2021; Tabah et al. 2022). While there are policy settings to ‘encourage support by family/whānau’ for Māori patients, (Ministry of Health 2014),⁴ this provision can be withdrawn at any time and does not always extend to gravely ill patients admitted to the ICU or HDU. COVID-related restrictions during the pandemic meant visitation was strictly limited.⁵ Whānau were forced to adapt, and hospitals had to adjust to changing guidelines and policies (Downar and Kekewich 2021; Graham et al. 2021; Bailey et al. 2022). Whānau narratives in our paper document inconsistent application of policies and procedures prior to COVID-19, suggesting that inconsistency and changing guidelines are long-standing issues. Inconsistencies add distress to the uncertainty experienced during an away-from-home hospitalisation. Managing inconsistencies will potentially impact proposed standardisation, which can provide clarity/certainty (or at least familiarity). Yet the rigidity that can occur from standardisation makes it difficult to account for specific contexts. Whānau acknowledged that discretion can also be applied in ways that can work to advantage Māori patients and whānau, e.g. where it is applied in a way to make a system work better for Māori, or disadvantage, e.g. where it is applied in ways that maintain privilege/status quo.

NZ’s health system is currently undergoing reconfiguration, but major changes in terms of where hospital services are located are unlikely in the short- and medium-term. Despite earlier calls to transport specialist doctors to the regions (see Masters-Awatere et al. 2019; Masters-Awatere, Murphy, et al 2020), many services, particularly those that are highly-specialised, or require specific equipment, will likely only be offered at larger hospitals. Consequently, the need for patients to travel to receive care, irrespective of whether that care is planned or unplanned, urgent or critical, will continue. Whānau will thus be required to continue to support people admitted away from their usual home, both as part of meeting holistic, whānau-centred approaches to health and wellbeing, and to respond to the lack of competent and responsive hospital healthcare for Māori patients, even though this should not be the responsibility of whānau.

In this paper we have advocated for policies and procedures that enable hospital staff to rebalance systems that have disadvantaged Māori. Whānau experiences of responsive staff and services highlight the value of flexibility when utilised to better whānau experiences. Hospital systems and services are capable of change and can contribute to better health outcomes. The findings in this study regarding communication challenges, information sharing, and not-yet-easily navigable systems may be worth further exploring in future hospital-related research.

Ethical approvals

Appropriate ethical approvals for the research were obtained from the University of Waikato School of Psychology (Ref: 2016:63), ratified by the Human Research Ethics Committee (Health) (Ref: 2017–20). Ethical approval was ratified by the University of Auckland Health Research Ethics Committee.

Explanation of Māori words

A translation of Māori kupu (words) has been provided after the first use. An exception has been made with the use of proper nouns (e.g. names of places and people); these have not been translated.

Acknowledgements

The authors would like to acknowledge Arama Rata – Ngāti Maniapoto, Taranaki, Ngāruahine – who assisted with other parts of the Hospital Transfers project. We would also like to thank our Whānau research participants who gave their time for the interviews and shared so willingly their experiences with us. Author contributions: All authors listed have contributed sufficiently to the project to be included as authors, and all those who are qualified to be authors are listed as authors. Interviews were conducted by RB, BM-A and MT-J. Initial analysis was workshopped by BM-A, DC, AB and RB. Subsequent material preparation and analysis were performed by RG, BM-A and DC who drew on interview notes from MT-J, BM-A and RB. The draft manuscript was written by DC, BM-A and RG. All authors have read and approved the manuscript.

Disclosure statement

No potential conflict of interest was reported by the author(s).

Additional information

Funding

The data contained within this manuscript was collected for the “Hospital Transfers: Whānau involvement in the healing equation” project; a Mauri Ora theme Human Flourishing foundational project of Ngā Pae o te Māramatanga – New Zealand’s Māori Centre of Research Excellence.

Notes

1 See https://www.futureofhealth.govt.nz/health-nz/ for a full discussion on these changes. District Health Boards established have been disestablished and from 1 July 2022, Te Whatu Ora (Health NZ) will administer health related services, including hospitals.

2 See https://www.waikatodhb.health.nz/patients-and-visitors/support/support-for-maori/.

3 See https://www.waikatodhb.health.nz/locations/waikato-hospital?tab=1.

4 See for example http://www.waikatodhb.govt.nz/patients-and-visitors/for-visitors-family-and-friends/supporting-a-patient/.

5 See http://www.waikatodhb.govt.nz/your-health/covid-19-in-waikato/covid-19-visitor-policy-at-waikato-dhb/ and http://www.waikatodhb.govt.nz/patients-and-visitors/for-visitors-family-and-friends/visiting-rules-and-tips/.