Introduction
Whānau (extended family) meanings, beliefs and knowledge in mokopuna TBI have until now remained unexplored. This situation exists despite well-establised models that highlight the importance of whānau in hauora Māori (Māori concepts of wellbeing). Te Whare Tapa Whā (the four-walled house) is one framework that uses the metaphor of the four walls of a marae (meeting house) to describe how four elements of well-being; whānau, tinana (the physical body), hinengaro (the mind) and wairua (a uniquely Māori connection with all aspects of the universe, sometimes also translated as spirituality) combine to contribute to a Māori determined sense of wellbeing (Durie, Reference Durie2001). International studies resonate with this indigenous model of health in clearly demonstrating the critical role of the family in optimising rehabilitation outcomes for children and adolescents with TBI (Anderson, Catroppa, Hariton, Morse, & Rosenfeld, Reference Anderson, Catroppa, Hariton, Morse and Rosenfeld2005; Braga, Da Paz Junior, & Ylvisaker, Reference Braga, Da Paz Junior and Ylvisaker2005; Burgess et al., Reference Burgess, Droktar, Taylor, Wade, Stancin and Yeates1999; Rivara et al., Reference Rivara, Jaffe, Polissar, Fay, Martin, Shurtleff and Liao1994; Saltapidas & Ponsford, Reference Saltapidas and Ponsford2007; Sander et al., Reference Sander, Cole Davis, Struchen, Atchison, Sherer, Malec and Nakase-Richardson2007; Taylor, Drotar, & Wade, Reference Taylor, Drotar, Wade, Roman and Michal1995; Taylor et al., Reference Taylor, Yeates, Wade, Drotar, Klein and Stancin1999, Reference Taylor, Yeates, Wade, Drotar, Stancin and Burant2001; Woods, Catroppa, Barnett, & Anderson, Reference Woods, Catroppa, Barnett and Anderson2011; Yeates et al., Reference Yeates, Taylor, Woodrome, Wade, Stancin and Drotar2002). However, to date, the voice of whānau has not found a place in the literature.
Of concern, there is well-documented overrepresentation of indigenous people with TBI (Adekoya & Wallace, Reference Adekoya and Wallace2002; Blackmer & Marshall, Reference Blackmer and Marshall1999; Langlois, Rutland-Brown, & Thomas, Reference Langlois, Rutland-Brown and Thomas2005; Langlois et al., Reference Langlois, Kegler, Butler, Gotsch, Johnson, Reichard and Thurman2003). Authors have underlined the importance of culture and suggested that further research is needed to better understand cultural world views salient to TBI as these are likely to improve both prevention and outcomes post-TBI. However, this remains a poorly understood area (New Zealand Guidelines Group, 2006; Saltapidas & Ponsford, Reference Saltapidas and Ponsford2008; Simpson, Mohr, & Redman, Reference Simpson, Mohr and Redman2000; Staudenmayer, Diaz-Arrastia, Oliveira, Gentilello, & Shafti, Reference Staudenmayer, Diaz-Arrastia, Oliveira, Gentilello and Shafti2007; Uomoto, Reference Uomoto and High2005).
Māori
Māori are the indigenous people of Aotearoa New Zealand, descended from the ocean-going navigators of Te Moananui a Kiwa, the Pacific Ocean. The most recent Population Census in 2006 found almost 18% of the New Zealand population (approximately 650,000 people) reported being of Māori descent, and demonstrated that Māori continue to be a young population with approximately 35% of Māori under 15 years old (Statistics New Zealand, n.d.). There is ongoing debate about the relative heterogeneity of Māori cultural identity, the dimension of experience of being Māori as well as the implications of being defined as Māori in research (Kukutai, Reference Kukutai2004; Pomedli, Reference Pomedli and Kingi2008; Robson & Reid, Reference Robson and Reid2001; Wereta, Reference Wereta2002). However, Durie's (Reference Durie2011) work has shown it is valid to consider Māori as a group. The Māori word mokopuna, commonly translated as grandchild, is used here to encompass the ages and stages of infant, child and adolescent development and those in young adulthood. This word was regularly used by the participants in this rangahau (research) to locate discussion within culturally salient time and relational space. It is therefore used in preference here.
Mokopuna TBI
Incidence rates of traumatic brain injury are recognised as significantly higher in Māori compared to non-Māori (Barker-Collo, Wilde, & Feigin, Reference Barker-Collo, Wilde and Feigin2009). Preliminary data show that Māori rates are three times that of non-Māori; 995/100,000 compared to 340/100,000 (Barker-Collo, Feigin, Theadom, & Starkey, Reference Barker-Collo, Feigin, Theadom and Starkey2012). Specific studies of mokopuna and whānau experience across various domains of TBI rehabilitation have yet to be conducted.
An important consideration is the number of mokopuna who speak Te Reo Rangatira (the Māori language) as their first language (Te Puni Kokiri, Reference Kokiri2007, Reference Kokiri2010). This factor drives an increasing need to ensure culturally responsive healthcare approaches for whānau who feel most comfortable communicating and conceptualising in Te Reo Rangatira and who may find conversing in English, particularly at times of stress, such as post-TBI, difficult.
Evidence of disparities in Māori access to support for serious injury, including TBI, are well documented (Jansen, Bacal, & Crengle, Reference Jamieson, Harrison and Berry2008). Accident Compensation Corporation (ACC) data show that while Māori have 1.5–2.5 the rates of all injuries compared to non-Māori, access to appropriate rehabilitation is less likely, further underlining the importance of understanding the Māori experience in order to improve outcomes (Jansen et al., Reference Jansen, Bacal and Crengle2008; New Zealand Guidelines Group, 2006).
International Literature on Culture and TBI
A significant body of literature also demonstrates disparities both in access to appropriate rehabilitation services and in outcome in indigenous and other ‘minority cultures’ in other parts of the world (Arango-Lasprilla & Kreutzer, Reference Arango-Lasprilla and Kreutzer2010; Arango-Lasprilla et al., Reference Arango-Lasprilla, Rosenthal, Deluca, Komaroff, Shere, Cifu and Hanks2007; Faleafa, Reference Faleafa2009; Haider et al., Reference Haider, Efron, Haut, DiRusso, Sullivan and Cornwell2007; Jamieson, Harrison, & Berry, Reference Jamieson, Harrison and Berry2008; Keightley et al., Reference Keightley, Ratnayake, Minore, Katt, Cameron, White and Colantonio2009, Reference Keightley, Kendall, Jang, Parker, Agnihotri and Colantonio2011; Nelson, Rhodes, Noona, Manson, & AI-SUPERPFP Team, Reference Nelson, Rhodes, Noona and Manson2007). Overall, these factors highlight the need for culturally appropriate investigation of whānau knowledge about traumatic brain injury in mokopuna.
Method
Marae wānanga were identified as the most appropriate place to invite discussion about mokopuna TBI in children and adolescents. For example, marae have been highlighted as appropriate places to discuss brain tissue research (Cheung, Reference Cheung2010), providing protocols useful for research interactions with the Māori community (McClintock, Mellsop, Moeke-Maxwell, & Merry, Reference McClintock, Mellsop, Moeke-Maxwell and Merry2010) and being central resources for cultural safety (Glavish, Reference Glavish2007). Overall, taking into account these factors, locating this discussion in a culture-specific space provided layers of cultural safety for all concerned. This choice meant that cultural practices and rituals of encounter routinely used on marae maintained the researcher in the position of guest. This practice was also followed as a way of priviledging the local peoples’ governance of the process and relationship with the researcher. This was also done mindful of the experience of Māori having both Māori and non-Māori researchers taking Māori information without regard for reciprocity or Māori ownership of such information (Smith, Reference Smith2003). Permission was formally sought from both the whānau (extended family) of the author as well as university ethical approval (Massey University, NZ Southern A, 09/48). The study deliberately excluded rehabilitation experts, to reduce the risk of the clinical rehabilitation paradigm dominating the narratives. Mokopuna and their whānau with experience of TBI were not specifically recruited for the same reason.
Nine marae each hosted two wānanga (Māori fora of learning and discussion where the outcome is not pre-determined). These were located in rural, remote and urban communities in Aotearoa New Zealand and were identified by Koroua and Kuia (elders) from the researcher's whānau and the Rōpū Kaitiaki (guardianship group). Each marae, via their marae committee or person in charge of the marae bookings, was asked to circulate a panui (notice) developed by the author to the people who usually frequent that marae, inviting participation in the wānanga. Each wānanga began with a pōwhiri (formal welcome) or mihi whakatau (welcome) after which food was consumed according to cultural protocol. The wānanga then proceeded to begin with karakia (prayers) led by the hosts who then handed over to the author to introduce the kaupapa (subject). The brief introduction opened up the topic of Māori child and adolescent TBI, discussing the consenting processes, answering questions and providing time for participants to complete consent forms. This was followed by an invitation for open discussion. The wānanga typically lasted approximately 2 hours.
Footage and written transcripts were analysed from the first round of wānanga using the Rangahau Kaupapa Māori methods of noho puku (self-reflection), whanaungatanga (connection) and kaitiakitanga (guardianship). These methods involved periods of quiet self-reflection by the researcher, reading transcripts, watching the footage, grouping the ideas into linked clusters via whanaungatanga (process of making relational links) and annual presentations to the Rōpū Kaitiaki (guardianship group). The Rōpū Kaitiaki was comprised of experts in both neuroscience and tikanga (cultural lore) and was established as part of the methods for the study. The second round of wānanga involved member checking of this layer of the analysis in the first part of the wānanga. This was followed by an invitation to operationalise the ideas using a pūrākau (story).
Three pūrākau were written, each exemplifying a case study of a mokopuna with a TBI. These pūrākau were:
1. Tama is a 3-month-old pepi. He was brought to hospital by a whānau member as he wasn't breathing properly, he wasn't opening his eyes or moving at all. He needed to be treated in Intensive Care. The doctors found he had a break in his skull, bleeding in his brain and damage to the brain itself. They called it a severe brain injury. Other tests showed he had partially healed broken leg bones and a broken arm, at different stages of healing. This was evidence he had been hit at different times. He left the hospital with long-term physical problems with weakness on his left side and visual problems. His mother's new partner was convicted of physically abusing the baby.
(Discussed at Te Mahurehure, Owae and Tapu te Ranga marae)
2. Tamahine is an 8-year-old girl who fell down some concrete steps at school. She seemed confused after the fall, the teacher noticed she was holding her head. She was taken to the family doctor by her whānau. The doctor diagnosed a mild traumatic brain injury because of her confusion. She had disrupted sleep for several days and seemed a bit withdrawn, she was fidgety, irritable and was lacking in confidence and found it hard to get on with her friends when she went back to school the following week. Several years later, when she started high school she found studying very difficult and continued to struggle with making friends.
(Discussed at Pukemokimoki, Rauru and Potahi marae)
3. Rangatahi is a 17-year-old who had a serious knock to the head in a car accident. He was a passenger and wasn't wearing a seatbelt. Two people died at the scene of the accident. He was in hospital for several weeks. When he left the hospital he lived in a rehabilitation unit for almost a year.
(Discussed at Araiteuru, Tutanekai and Piritahi marae)
Responses to these pūrākau were recorded. Analysis of the second wānanga utilised the same methods as were used in analysis of the first round of wānanga. In addition, dedoose (www.dedoose.com), an online research analysis tool, was used by the author to code the data in order to build theory. Coding was peer reviewed by another researcher, a fellow doctoral student familiar with qualitative research methods. Final summaries of findings and conclusions were sent to the participating marae for their comments.
Results
The nine participating marae were from rural, remote and urban locations across New Zealand. They were Araiteuru, Tapu Te Ranga, Tutanekai, Owae, Pukemokimoki, Te Mahurehure, Potahi, Piritahi and Rauru marae. Seventy-nine people attended the first round of wānanga and 56 attended the second round. No participants declined consent.
Overall, four layers of results were determined; first, seven central ideas identified by the first round of wānanga; second, a Māori formulation of mokopuna TBI; third, the wairua theory of mokopuna TBI; and, finally, Te Waka Oranga, an intervention. This paper focuses on the theory-building components while a further paper describes the intervention.
Analysis of data from the first set of wānanga, confirmed and refined by the paritcipants at the second wānanga, identified the following seven ideas as central to consideration of mokopuna TBI. These are presented with examples from the wānanga in italics, with the name of the marae. The number 1 signifies the quotation is from the first wānanga:
1. Wairua is fundamental and attended to as a priority,
He mea wairua (it's a wairua thing). He mea wairua nei (this is a wairua thing). Te Mahurehure 1
So immediately it was a process of everybody come together and karakia, ngā karakia tawhito (ancient prayers), ngā karakia inanahi rā (modern prayers), and whatever, you know, so it was the whole joining forces to ensure ‘A’ that this mokopuna can be cared for in it's current state. Tapu te Ranga 1
2. Whānau are the functional unit of healing,
And also just that connection, the talking, acknowledging that person and being there by the whānau. Doctors and nurses aren't going to do that, they just there to check the blood pressure, flip charts, or whatever, so a huge whānau involvement. Araiteuru 1
Yeah, and I just really think that there is just such a lot of power that grandparents have if you want to use that, you know the knowledge that you have. And you mightn't know it, what it is. Pukemokimoki 1
3. Whānau experience the clinical world as an alien culture,
They are all practitioners in their field, nowhere near to understanding you as a Māori person. Owae 1
So if I was to go to the Hauora, I prefer the Hauora because you know when you talk, when you say, ‘I'm starting to feel my wairua’, you know they actually understand that. If I was to say that up at the Doctors, they'd say, ‘What's this guy on?’ sort of thing, you know, they can't relate to the vocab. Piritahi 1
4. Mātauranga Māori has a wealth of resources specific to mokopuna traumatic brain injury,
. . .ka patu te upoko, ka patu te whakapapa (when the head is injured, the genealogical line is injured). Araiteuru 1
I was talking with one fulla and he said the kaitiaki (guardian) of that, particularly of that third eye was Tupaiwhakarongowānanga. And that kaitiaki (guardian) of that place and I'm likening it to that person in a coma who is aware of what's being said and who is there and who, they are actually in this void though, not even like they are in their body. I liken it to the korero about Tupaiwhakarongowānanga. Araiteuru 1
5. Māori identity is about connection,
So you know I think something that I admire about being Māori is working together so that we acknowledge that we all have a piece of the puzzle to contribute, you don't have to be the everything and that I think helps soothe your wairua too, and knowing that you don't have to be responsible and take ownership that everything is shared, I think for me that's always been a real special trait for being Māori. Araiteuru 1
6. Places have a healing role because they define identity,
What we talking about today is something so very valuable that in order to understand we need to go back, way back in time, way back into the past, where our people had the ability to attend to these problems of the mind, of the spirit, of the soul, because they lived in the harmony with nature the environment and their atua (gods). Rauru 1
7. Other trauma is remembered when traumatic brain injury discussion is invited.
. . .brain trauma just doesn't happen from physical injuries, I'm talking trauma of incest, sexual assaults and the damage that it does to affect the wairua and the shock and effect of those sort of acts on the human brain and the developing brain. Owae 1
The second round of wānanga also identified four core aspects that formed what was termed a Māori cultural formulation of mokopuna TBI. These were; Wairua (a pivotal component of hauora), Tangata (people), Wā (time) and Wāhi (place). These core concepts can be seen as navigational tools, identified by the participants, by which mokopuna TBI needs to be considered. These are evident in the underpinning of the theory building.
The Wairua Theory of Mokopuna TBI
The wairua theory of mokopuna TBI proposes that wairua is also injured in mokopuna TBI. According to this theory, wairua is understood as a profound sense of connectivity between Māori and all aspects of the universe. This injury to wairua activates a cascade of culturally determined responses. The theory proposes that Māori whānau have latent cultural knowledge resources (beliefs, attributions and practices) held within whakapapa (genealogy) that are relevant to mokopuna traumatic brain injury, which the whānau may or may not be aware of, prior to the injury. When mokopuna traumatic brain injury occurs these resources are activated.
This activation happens because the mokopuna traumatic brain injury re-awakens awareness of the head's special status. Given the nature of this understanding, the wairua injury to the head demands a Māori cultural response. The whānau awareness that these resources exist and what they entail are held within the mātauranga of whakapapa. In this way the tangata (people) within whānau and whakapapa are recognised as having access to the most salient cultural resources.
This mātauranga also recognises that clinical services do not have the understanding or skill to respond to the wairua aspect of the mokopuna traumatic brain injury. Whānau have the most important part to play in responding effectively to the wairua injury because they are most closely linked via their wairua to the mokopuna.
When TBI causes injury to wairua this also initiates the communicating function of wairua. The injury's occurrence is transmitted via wairua through the whānau into the whakapapa, both into the past and forward into the future. This communication is made clear because the whakapapa responds in two ways. The whakapapa stretches across time and holds within its memory both other traumatic events and mātauranga of specific practices for healing mokopuna traumatic brain injury. First, the memories of past traumatic events are rekindled when discussing a mokopuna traumatic brain injury. Concern about the impact of this brain injury on future generations comes to the fore alongside the meaning of the TBI in relation to past events. Second, the mātauranga resources required to attend to the wairua injury component of the traumatic brain injury are recalled.
This theoretical proposition does not exclude other world views and approaches to attending to the needs of a mokopuna with traumatic brain injury. The narratives did not reject Western medical interventions. Rather, this theory proposes that other approaches are necessary but not sufficient to meet Māori needs. This analysis also suggests that adjunctive attempts to heal the range of trauma that pre-existed within whakapapa, as remembered at the time of traumatic brain injury, will enhance the outcomes both for this mokopuna with traumatic brain injury and their whānau.
Practices that are activated from the whakapapa storehouse of mātauranga are contained within Te Reo Rangatira me ōna tikanga (the Māori language and protocols). The sound and vibrational quality of Te Reo Rangatira is highlighted as an essential feature of the positive impact that this has on healing.
Discussion
This is the first time theory building using Rangahau Kaupapa Māori has been developed in the context of mokopuna TBI. This process uncovered relatively homogeneous responses which priviledged wairua as the fundemental aspect of hauora to be attended to in this context. Whānau were found to have a crucial role both as a storehouse of knowledge and in the delivery of these knowledge resources, because of the culturally salient features present. These features distinguish this paradigm from other work about the role of family in child and adolescent TBI. Researchers have found that involving family by training them to become rehabilitationists (Braga et al., Reference Braga, Da Paz Junior and Ylvisaker2005) and by improving their ‘parenting’ can demonstrate specific improvements in child and adolescent TBI outcomes (Woods et al., Reference Woods, Catroppa, Barnett and Anderson2011). However, these interventions perpetuate the idea that families lack existing knowledge pertinent to their child's TBI. Rather, they suggest that professionals have the knowledge needed, which can then be taught to families for improvement to occur. In contrast, this work locates whānau knowledge as an equal knowledge partner at the interface with clinical knowledge.
Smith (Reference Smith2003) has provided an influential guide to critique of Kaupapa Māori theory. Application of Smith's criteria provides a means of examining the quality of the current theory. For example, the theory presented here meets Smith's requirements for being ‘a useful theory’ (Smith, Reference Smith2003, p. 4). This utility stems from the view presented by participants that Māori knowledge is either unrecognised or dismissed in current mokopuna traumatic brain injury rehabilitation. Caution about application of this theory is appropriate and is predicated on Māori determined infrastructure and governance. The theory does not focus on struggle, it takes a positive position that Māori are resilient. Accountability is to the community of nine participating marae and to the wider Māori community. Recognition that in current mokopuna TBI rehabilitation clinical and whānau knowledge are valued differently is central. Robust and transparent methods provide the theory with capacity to withstand challenge from both Māori hegemonic thinking and Western scientific critique.
Limitations and Opportunities for Future Work
A number of aspects of this rangahau offer possibilities for future exploration. This theory is postulated to resonate with Māori people who have some operational connection to their marae. A recent report found that 55% of Māori reported they attend marae ‘often’ or ‘very often’ (Te Puni Kokiri, Reference Kokiri2010). Another found that almost 70% of Māori had visited a marae in the previous year (Statistics New Zealand & Ministry of Culture and Heritage, 2003). This theory, then, has potential appeal to a majority of Māori, given that the entry point for participants was marae-based. Conversely, a significant group of Māori remain who may not find that this theory fully reflects their experience.
The approach focused on mokopuna TBI and their whānau, whether this theory is applicable to adults with TBI is unknown. The homogeneity of the responses may indicate bias. This could reflect an element of data misinterpretation, perhaps related to the gender or iwi affiliations of the researcher. Despite efforts to ensure saturation, it is possible that participants did not feel encouraged to share important insights and understandings, or that these were miscoded.
It is difficult to know why fewer participants attended the second round of wānanga. There are likely to be a number of reasons. It is possible these participants disagreed with the discussion at the first wānanga or participants may have prioritised other activities, they may have felt satisfied that the discussion was progressing appropriately, meaning it was unnecessary to attend the second wānanga.
Wairua is at the base of the hierarchy of cultural needs in mokopuna traumatic brain injury. The role of wairua in providing a communicating and connecting link amongst whānau was identified. This is in contrast to Te Whare Tapa Whā model where the four elements of tinana (physical needs), whānau (relational needs), hinengaro (psychological needs) and wairua are equally weighted (Durie, Reference Durie1994).
Conclusions
This is the first study using Māori-specific methods to explore Māori knowledge applied to mokopuna TBI. The results are likely to be salient for a majority of Māori. This theory proposes that alongside injury to the brain itself, in mokopuna TBI an injury to a culturally determined aspect of health, namely the wairua, is present. Therefore, this aspect of injury requires application of cultural resources held within the geneologic storehouse of knowledge available to whānau, alongside clinically indicated interventions. This theory provides a guide to intervention which is the focus of the companion article in this issue (Elder, Reference Elder2013). The theory itself challenges other work in the field by identifying whānau as equal knowledge partners at the interface with clinical services. Implications for testing of this theory in mokopuna TBI and in the context of other insults to the brain provide opportunities for future work.
Glossary
- hauora
Māori concept of holistic health
- he
a or some
- hui
meeting
- iwi
tribe
- kaitiaki
guardian
- karakia
prayer
- kaumatua
esteemed elder of either gender
- kaupapa
subject, reason
- koroua
grandfather, esteemed elder
- kuia
grandmother, esteemed female elder
- Māori
indigenous people of Aotearoa, New Zealand
- marae
traditional Māori campus of related areas and buildings
- mātauranga
sometimes translated as knowledge, knowledge systems
- mokopuna
grandchild
- noho
stay, sit
- noho puku
self-reflection
- ora
wellbeing
- oranga
healing, health
- Pākehā
non-Māori non-Pacific New Zealander
- panui
notice
- pūrākau
story
- rōpū
group
- tangata
human being, person
- tapa
wall
- tapu
sacred
- Te Ao Māori
the Māori world
- Te Reo Māori
the Māori language
- Te Reo Rangatira
the language of chiefs, another way of saying the Māori language
- upoko
head
- wā
time
- wāhi
place
- wairua
sometimes translated as the spiritual dimension of wellbeing, profound connection, uniquely Māori
- waka
canoe, vessel, conveyance
- wānanga
traditional fora for learning and discussion
- whakapapa
geneology
- whā
four
- whānau
extended family
- whānau ora
wellbeing of the extended family system
- whanaungatanga
process of making relational links
- whare
house
