“ cultural checklists ” (Ramsden, 2000, p. 7) that it might be tempting to include when ensuring a service is “ culturally appropriate ” . “ Cultural safety ” , “ cul-tural competency ” , and other similar terms are not unique to healthcare in New Zealand but have recently been explored internationally (Coffi n, 2007; Grote, 2008; Musolino, Babitz, Burkhalter, Thomp-son, Harris, Ward, et al., 2009). For people with apha-sia, the speech-language pathologist (SLP) is key in health and disability service provision, and most SLPs work for “ mainstream providers ” . The extent of the knowledge, understanding, and humility required to provide culturally safe services for M a ori with aphasia is illustrated in the title of this article, “ But I ’ m from Hauiti and we ’ ve got shags ” . This is a quote from Makere, a M a ori elder with aphasia. When Makere was given a reading passage about ducks in New York, as part of her SLP session, she informed the SLP that her home town (Hauiti) has shags (not ducks). Makere ’ s eloquent expression of the need to incorporate her environment and worldview in therapy sessions underpins this article.

Introduction

Health services should be “ respectful of the culture of individuals, minorities and indigenous popula-tions ” (World Health Organization, 2001, p. 12). Within the New Zealand context, the New Zealand Disability Strategy (Minister for Disability Issues, 2001) expands on this further. Objective 11 of the strategy (Minister for Disability Issues, 2001, p. 25) aims to “ promote participation of disabled M a ori ” (the Indigenous peoples of New Zealand) in all aspects of society, including health and disability ser-vices. The strategy calls for mainstream providers of disability services to be “ accessible to and culturally appropriate for disabled M a ori and their wh a nau ” (extended family). Of paramount importance in the New Zealand context is the concept of “ cultural safety ” . Cultural safety examines the power differen-tial in relationships between health professionals and the people they serve (Ramsden, 2000). It is inextri-cably linked to the attitude of the health professional, and therefore not rigidly defi ned (Ramsden, 2002). Cultural safety expressly avoids the use of the

Correspondence: Karen M. McLellan, Psychology (Speech Science), The University of Auckland Tamaki Innovation Campus, Private Bag 92019, Auckland 1142, New Zealand. Email: k.mclellan@auckland.ac.nz

International Journal of Speech-Language Pathology, 2013; Early Online: 1–12

ISSN 1754-9507 print/ISSN 1754-9515 online © 2013 The Speech Pathology Association of Australia LimitedPublished by Informa UK, Ltd.DOI: 10.3109/17549507.2013.864334

M a ori experiences of aphasia therapy: “ But I ’ m from Hauiti and we ’ ve got shags ”

KAREN M. MCLELLAN 1 , CLARE M. MCCANN 1 , LINDA E. WORRALL 2 & MATIRE L. N. HARWOOD 1

1 The University of Auckland, Auckland, New Zealand, and 2 The University of Queensland, Brisbane, Australia

Abstract This study explored M a ori experiences of aphasia therapy, with a view to ascertaining what makes a service culturally safe as well as “ accessible to and culturally appropriate for ” M a ori with aphasia and their wh a nau (extended family). M a ori are the indigenous peoples of New Zealand. This study incorporated interpretive description (a qualitative meth-odology) within kaupapa M a ori research (a M a ori approach to research). In-depth semi-structured interviews were undertaken with 11 M a ori with aphasia and 23 of their nominated wh a nau members. They reported a wide variety of experiences of aphasia therapy, in six themes: We ’ re happy to do the work, but we can ’ t do it alone; Relationship; Our worldview; The speech-language therapy setting; Aphasia resources; and Is this as good as it gets? While some M a ori with aphasia reportedly received an accessible and culturally appropriate service, others did not. It is concluded that, for M a ori with aphasia, a strong therapeutic relationship is central. The success of this relationship is shaped by the SLP ’ s appreciation of the worldview of the person with aphasia and wh a nau, the setting of the therapy, and the resources used. Successful therapy will involve collaboration between clinician and wh a nau, and therapy resources that affi rm the identity of the person with aphasia.

Keywords: Aphasia , speech-language pathology , qualitative.

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2 K. M. McLellan et al.

Throughout this article many M a ori words are used, as is common in New Zealand English. Trans-lations of M a ori words are provided in the text and a glossary is provided in the Appendix.

At present SLPs have little guidance as to what constitutes a service that is accessible, culturally appropriate, and culturally safe. There is no published research involving M a ori with aphasia (McLellan, McCann, & Worrall, 2011). In the absence of directly- relevant literature, we can seek direction from the M a ori and Indigenous health and disability literature and the existing (non-M a ori) aphasiology literature. These have shown areas in which current service pro-vision is inadequate, inappropriate, and in need of improvement. In this context, it is unlikely that M a ori with aphasia fi nd SLP services are entirely accessible, culturally appropriate, nor safe. In light of this, the current study explored M a ori experiences of aphasia therapy, with a view to ascertaining what makes a service culturally safe as well as “ accessible to and culturally appropriate for ” M a ori with aphasia and their wh a nau.

The only existing description of M a ori experi-ences of speech-language therapy following stroke is that provided by Harwood (2012), who sought to understand and improve stroke recovery for M a ori and their wh a nau. Harwood gave two examples. The fi rst was from an elder who observed an SLP work-ing with a M a ori patient. The elder observed that the patient struggled to understand and pronounce the English words that the SLP was using, but under-stood well when the elder spoke to him in M a ori. The second example was from the daughter of a man who did not receive SLP input after his stroke. She recognized that her father would have adjusted better to living with stroke if he had received speech- language therapy early on. These two examples give some insight into M a ori experiences of speech- language therapy. That is, therapy is not always pro-vided in the language in which M a ori need it or at the time at which M a ori need it.

As part of an outcome evaluation of Objective 11 (Minister for Disability Issues, 2001), Wiley (2009) interviewed M a ori with disabilities and their care-givers. Participants reported having to compromise their M a ori worldview to access mainstream ser-vices because service providers did not acknowledge their culture or take care of their cultural needs. Furthermore, consumers and caregivers needed to be “ extremely proactive, even aggressive ” (Wiley, 2009, p. 1210) to access services and had to fi nd their own way through the system to get the assis-tance they required. The caregivers of M a ori chil-dren admitted to hospital have also identifi ed a lack of cultural awareness among staff and the need to be pro-active in order to access services (Arlidge, Abel, Asiasiga, Milne, Crengle, & Ameratunga, 2009). In Arlidge et al. ’ s study many caregivers were not able to be pro-active because they were “ alien-ated within the hospital environment … and did not

appear to see themselves as being entitled to high-quality information or services ” (Arlidge et al., 2009, p. 177). Similarly, in Australia Yolgnu people with chronic health conditions have reported ineffective communication from health professionals restricting their ability to understand and manage their own health (Lowell, Maypilama, Yikaniwuy, Rrapa, Williams, & Dunn, 2012).

It is well documented that the therapy setting, resources used, and the relationship with the SLP are all important for the success of aphasia therapy (Armstrong, Hersh, Hayward, Fraser, & Brown, 2012; Fourie, 2009; Hersh, 2004, 2009; Parr, Byng, Gilpin, & Ireland, 1997). Preferences for environ-mental setting, relevance of resources used in ther-apy, and the nature of the therapeutic relationship are all shaped by a person ’ s culture. Therefore, SLPs working with M a ori need to be aware of ways in which M a ori culture might infl uence these aspects of therapy. With the dearth of literature about M a ori experiences of aphasia and language therapy, one could look to other Indigenous popu-lations for direction. However, there is very little research about aphasia in any Indigenous peoples (Armstrong et al., 2012). From their research with Aboriginal Western Australians with aphasia, Arm-strong et al. (2012) highlighted at least one area that might be applicable to service delivery for M a ori with aphasia. They observed that their par-ticipants were active in community groups and might benefi t from language therapy or aphasia education being integrated into these existing groups rather than provided as a separate service.

In light of these collective fi ndings, the aim of this study was to explore M a ori experiences of aphasia therapy, with a view to ascertaining what makes a service culturally safe as well as “ accessible to and culturally appropriate for ” M a ori with aphasia and their wh a nau.

Method

In the current article we expand on the fi ndings from a larger study about the experiences of M a ori with aphasia and their wh a nau. This is a kaupapa M a ori research study. Kaupapa M a ori is an Indigenous research approach that is, in essence, “ research for, by and with M a ori ” that privileges M a ori knowledge and ways of knowing (Smith, 2012, p. 185). Kau-papa M a ori theory is a “ theoretical position ” within the critical theory framework (Pihama, 1993, p. 39). Using this critical approach, kaupapa M a ori research always involves “ an analysis of existing power struc-tures and societal inequalities ” (Pihama, 1993, p. 56). Therefore, all aspects of this research involved a critical approach and an analysis of power. The qualitative research methodology interpretive description was incorporated with kaupapa M a ori research. Interpretive description is rooted in a dis-cipline (in this case, speech-language pathology) and

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Maori experiences of aphasia therapy 3

is used to develop clinically relevant fi ndings (Thorne, 2008). Kaupapa M a ori research and interpretive description both focus on applied research that will benefi t the community in which it is undertaken. The combination of kaupapa M a ori research and interpretive description ensured that the research was relevant to M a ori and to SLPs and likely to ben-efi t both groups. A detailed analysis of the theoretical and practical implications of combining kaupapa M a ori research and interpretive description is pro-vided in McLellan, Harwood, McCann, Crengle, and Worrall (2013).

Procedure

This study was approved by the Northern Y Health and Disability Ethics Committee. In keeping with kaupapa M a ori research, it was guided by a rangahau wh a nau (research advisory group). The rangahau wh a nau in the current study was a group of M a ori with a connection to stroke, led by a kuia (female M a ori elder). They provided guidance for the research plan, participant recruitment, researcher conduct, and data analysis.

Participants. Participants were 11 M a ori with aphasia and 23 wh a nau members. Inclusion criteria for participants with aphasia were: aged over 18 years, aphasia caused by stroke, at least 6 months post-onset of aphasia, and have wh a nau who will participate in interviews. Participants with aphasia nominated members of their wh a nau to participate. This was important because “ it is up to each wh a nau and each individual to defi ne for themselves who their wh a nau is ” (Minister of Health and Associate Minister of Health, 2002, p. 1). No limitations were placed on participating wh a nau members (e.g., age of participant or relationship to person with aphasia). One participant (Latimer) did not include any

wh a nau members because his nominated relative was unavailable for an interview. All participants had been diagnosed with aphasia by an SLP, but severity and sub-type of aphasia were not measured for this study. There were two reasons for this. In an investigation of M a ori experiences of aphasia the presence of aphasia was more important than the sub-type or severity. Also, it is likely that some participants would have been reluctant to take part in the study if they had been required to undergo a language assessment. Initially, participants with aphasia were recruited through the fi rst author ’ s personal networks. This was an attempt to include a range of participants, with and without connections to the public health system, and provide insight into situations in which M a ori with aphasia do not receive SLT services. However, the two people recruited in this way had, coincidentally, received aphasia therapy through the public health system. When personal networks were exhausted, recruitment continued through SLPs.

Most of the participants in this study asked to be acknowledged by name in the text and in the acknowledgements section. This practice is not unusual in kaupapa M a ori research, but would be considered a violation of participants ’ right to ano-nymity in a non-Indigenous research framework. It was discussed with the rangahau wh a nau (research advisory group) and then approved by the ethics committee. Pseudonyms were used when requested or for participants who were unable to consent to the use of their real name. Relevant participant information is listed in Table I.

Other demographic information. All but one participant with aphasia lived with family members who provided varying degrees of care and support. Six participants were employed at the time they acquired aphasia. Of these, only one returned to work; volunteering at the

Table I. Relevant participant information.

PWA M/F Age range TPO Rural/urban Speaks te reo M a ori Wh a nau interviewed PWA participation

Connie F 50 – 59 10 � Urban No husband, daughter � � Latimer M 50 – 59 � 2 Rural No no wh a nau, SLT present � � � Christine F 60 – 69 2 – 5 Urban No husband � � � Margaret F 60 – 69 2 – 5 Urban No partner, brother � � � Sam M 60 – 69 2 – 5 Rural No partner � � Hone M 60 – 69 2 – 5 Rural Regularly. English and M a ori

equally affected post-strokewife � �

Makere F 70 – 79 6 – 9 Urban Regularly. M a ori better than English post-stroke

2 daughters, 1 son �

Bobby F 70 – 79 2 – 5 Rural First language as a child but not used in adulthood

husband � � �

Noeline F 70 – 79 2 – 5 Urban Only when praying daughter, son � � � Nan F 70 – 79 � 2 Urban No 6 daughters, 3 grandchildren � Jack M 70 – 79 � 2 Urban No wife � � �

PWA, person with aphasia; M/F, male or female; TPO, time post-onset of aphasia (years); rural/urban refers to where the participant lives; te reo M a ori, the M a ori language; PWA participation, the extent to which participants with aphasia participated independently in the interview; � � � , largely independent during the interview with some need for clarifi cation and/or supported conversation techniques from interviewer or wh a nau; � � , participated in interview with signifi cant support from wh a nau and/or SLT and clarifi cation from wh a nau; � , reduced participation in the interview, requiring extensive support from wh a nau and/or SLT.

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4 K. M. McLellan et al.

kura kaupapa M a ori (M a ori immersion primary school) where he had previously been employed. All participants had received speech-language therapy. At the time of the interviews three participants were receiving one-to-one language therapy, four were participating in groups, and four were receiving no input. We recognize that participants ’ perceptions and recollections of therapy might vary according to time since discharge. However, because participants were sharing personal experiences, the strength of their feelings mediated the saliency of their recollections of therapy.

Data collection. Data collection involved semi-structured interviews with individuals or wh a nau groups. Participants were asked about the stroke, its impact on communication and the impact of the changed communication on their lives. When the fi rst two wh a nau spontaneously mentioned the topic of speech-language therapy, it became evident that speech-language therapy might be an important part of the experience of aphasia. Consequently, we included questions about participants ’ experiences of language therapy in subsequent interviews. Thus, the aims of the research were refi ned as the study progressed.

Interviews were undertaken by the fi rst author, an SLP with experience in aphasia. Participants chose the locations for the interviews. One inter-view took place at a marae (traditional meeting place) and the remaining 16 in participants ’ homes. All interviews were conducted in English, although participants often used M a ori words and phrases (as is common practice in NZ English vernacular). Participants with aphasia determined who attended their interviews. Most were interviewed in wh a nau groups, although Bobby was interviewed alone and Latimer with his SLP as a support person. In New Zealand, particularly for M a ori, it is common for one or more support people to accompany a person to medical appointments, job interviews, and other events. While it is possible that the presence of the SLP infl uenced the content of Latimer ’ s interview, he asked that she attend and it was culturally appro-priate for her to do so. Family members who were unable to attend their wh a nau group interview were interviewed separately. Interviews lasted 45 min-utes to 1.5 hours. The interviewer and wh a nau members assisted participants with aphasia to par-ticipate in the interviews by encouraging them to use writing, gesture, or drawing to enhance their communication. Family members clarifi ed the response of the person with aphasia as required, and then added their own answers. All interviews were audio recorded and transcribed by the fi rst author. Consent was sought to video-record inter-views if the person with aphasia used a lot of visual supportive communication techniques during ini-tial interactions. Five participants were videoed and one declined to be videoed.

Data analysis. Data analysis followed an inductive approach, informed by interpretive description (Thorne, 2008). The fi rst author read and re-read the transcripts and then coded them using NVivo 10 software (NVivo qualitative data analysis software 2012). As individual quotes were coded, patterns emerged, and the quotes were gathered together into themes. As analysis progressed, relationships between themes became evident. Developing themes were discussed at length within the research team. As is appropriate for kaupapa M a ori research, and recommended by interpretive description, all participants were offered a return visit to discuss the emerging analysis. Five wh a nau received a return visit and two requested a written summary instead. Three participants with aphasia passed away and attempts to contact their wh a nau were unsuccessful, and one declined further involvement due to ill health. On return visits participants gave positive feedback about the emerging analysis and identifi ed aspects that refl ected their experiences. Some participants emphasized themes that were most salient for them and asked that these be given more prominence. Where possible, such requests were incorporated. However, because the analysis presented a balance of all participants ’ experiences, individual themes were not always emphasized.

Rigour

Kaupapa M a ori and interpretive description take rather different approaches to rigour, because they come from different paradigms. When these two research approaches are combined, rigour require-ments of both must be met. The word “ rigour ” is not used in kaupapa M a ori research. Instead, kau-papa M a ori research places emphasis on being decolonizing and transformative (Pihama, 2011). In decolonizing research M a ori have control over M a ori knowledge and investigations into M a ori issues (Cram, 2001). In this study, wh a nau have retained control over their data with one wh a nau reserving the right to check all reports before dis-semination. Transformative means that kaupapa M a ori research aims to make a positive change for M a ori (Pihama, 2011). Before data collection began, the rangahau wh a nau (research advisory group) confi rmed the expected benefi ts for M a ori from this project. On-going approval was received from various sources including the participants and M a ori and Indigenous forums.

The main requirements for rigour in interpretive description are epistemological integrity, representa-tive credibility, analytic logic, and interpretive author-ity (Thorne, 2008, p. 223ff). In order to have epistemological integrity, the research question must be congruent with the stated epistemology, and data must be interpreted in keeping with the research question. Interpretive description studies address problems recognized within the discipline (Thorne,

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Maori experiences of aphasia therapy 5

2008). Accordingly, in this research we investigated M a ori experiences of aphasia therapy, recognizing that this information is important for the discipline of speech-language therapy in New Zealand and other countries where M a ori live. As a way of acknowledging the existing beliefs and biases within the discipline, the fi rst author developed a written refl ection about M a ori and aphasia therapy before interviews began. After data analysis, this document was re-read to ensure that the fi ndings were not pre-conceived. Representative credibility requires that claims about fi ndings are consistent with the sam-pling that was undertaken. We gained representative credibility by acknowledging that the fi ndings of this study come from the views of the 11 wh a nau who participated. They are not representative of all M a ori wh a nau with aphasia. Analytic logic came from cre-ating an audit trail throughout the interviewing and analysis process, and providing quotes from partici-pants to illustrate claims. Interpretive authority was assured by checking analysis with members of the research team and other colleagues.

Results

Participants reported a wide range of experiences of aphasia therapy. From the data relevant to experi-ences of aphasia therapy, six themes emerged; two themes pertaining to the wh a nau ’ s approach to apha-sia therapy and four pertaining to the SLP ’ s approach. The themes are listed in Table II. In this section we provide an outline of the overall fi ndings, followed by details of each theme individually. Finally, the relationship between the themes is explained.

Some participants reported positive experiences of aphasia therapy, some reported negative experiences, and others a combination. There were many stories of language therapy meeting people ’ s various needs, and some of therapy not meeting needs. Some par-ticipants expressed vivid recollections of therapy experiences, while others needed to be reminded that they had received therapy. Time post-onset of aphasia did not appear to infl uence people ’ s attitudes towards the therapy they had received or hoped to receive. Of all the participants, Makere ’ s wh a nau spoke the most about speech language therapy. They critically appraised the services they had received and made suggestions for improvements. The whakaaro

(thoughts) and k o rero (words) of this wh a nau have made a particularly valuable contribution to the research.

We ’ re happy to do the work, but we can ’ t do it alone

In entering the aphasia care pathway many wh a nau members felt that language therapy was their respon-sibility and they were prepared to put a lot of time into language rehabilitation exercises. However, wh a nau were often frustrated by a lack of informa-tion about aphasia and how they could best support or provide rehabilitation. Sam ’ s partner acknowl-edged her responsibility for Sam ’ s rehabilitation, and saw professional support as an appreciated extra:

Thank goodness for ones like [SLP] and all them … for him to get that extra care because sometimes family can ’ t do that. There ’ s so much for family … to have to take care of.

Christine and her husband took a very active part in speech-language therapy and, as her husband said, “ we really worked — she really worked hard ” . They spoke about spending 6 or 7 hours a day on speech and language exercises during her 3 months in hospital, both with the SLP and by themselves.

While taking responsibility for language rehabilita-tion, participants recognized their need for profes-sional guidance. Participants placed high value on SLP involvement, but not everyone received the support they needed. Margaret ’ s brother said:

We would have liked to have known what some of the good exercises could be so that we could do them, ‘ cos we spent a lot of time at the beginning with her really not knowing what to do.

Makere ’ s daughter said:

There is so much value for M a ori people in learning how to cope after strokes, if we understand speech-language therapy techniques, and understand what they ’ re for ... We could have had Mum back at a better level earlier if we had understood the process a bit better.

Makere ’ s wh a nau did everything they could, even when they did not always understand why, as her daughter explained:

We couldn ’ t understand why they wanted Mum to poke her tongue out. But we dutifully found out that these were the exercises our mother had to do so we got the set of exercises and we made our mother prac-tise them … It ’ s not, sort of 8 years later that I realize personally that there were two aspects to it. That you had paralysis in your tongue and down your throat as opposed to the speech comprehension going on in the brain.

These quotes show that Margaret ’ s and Makere ’ s wh a nau accepted responsibility for rehabilitation.

Table II. Themes.

Theme Type

We ’ re happy to do the work, but we can ’ t do it alone

Wh a nau ’ s approach

Relationship SLP ’ s approachOur worldview SLP ’ s approachThe speech-language therapy setting SLP ’ s approachAphasia resources SLP ’ s approachIs this as good as it gets? Wh a nau ’ s approach

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6 K. M. McLellan et al.

of therapy. Her son said this took them “ back to square one ” .

The contrasting experiences of Makere and Nan reveal much about the therapeutic relationship. Nan ’ s story demonstrates that a good relationship with the SLP can motivate people to continue receiv-ing therapy, even when they do not want to. Makere ’ s story demonstrates that, even if the person with aphasia and family are internally motivated, they are unlikely to want to attend therapy sessions if the relationship with the therapist is not good.

Our worldview

The recognition of worldview is extremely important for the therapeutic relationship and, therefore, the success of aphasia therapy. Many of Makere ’ s diffi -culties with speech-language therapy appeared to stem from her culture and worldview not being recognized. Makere spoke te reo M a ori (the M a ori language) and English before her stroke. After the stroke her M a ori language was much better than her English. Unfortunately, Makere did not have access to therapy in te reo M a ori, and the SLP did not recognize when she was answering correctly in M a ori. Her son gave an example:

The speech therapist didn ’ t even consider that Mum would probably be better with cue cards that were in M a ori. You know, she keeps showing “ dog ” , turn the card over it says “ dog ” on the back, picture of a dog. Shows it to Mum, Mum goes “ kur ī ” [dog] and then [SLP] goes “ no, dog ” .

Makere ’ s family arranged for an interpreter to come to therapy sessions, but that was not very suc-cessful either. Her daughter explained that, because the interpreter only interpreted words and did not explain worldviews, Makere ’ s answers were inter-preted as incorrect:

The concepts that the speech therapist was looking at were, um, Mum was translating them into a M a ori framework and then replying in that framework, but I can see that it would be interpreted as a cross [i.e., incorrect].

This situation illustrates an important, but often overlooked, concept. The therapy was not only in an English medium, it was in the accompanying English worldview. In Makere ’ s therapy sessions the interpreter was translating the words, but Makere had to translate the concepts. The presence of a kaitiaki M a ori (M a ori support worker) at SLP sessions did not help either. Makere ’ s daughter explained:

Mum would be giving it in M a ori and [the kaitiaki] would be going “ mmm ” and … they had the same understanding that our mother ’ s answered the question right.

They required education and guidance from the SLP, but they did not receive this. They lacked infor-mation about aphasia, the role of the SLP, and the rehabilitation process.

Relationship

The SLP ’ s relationship with the person with aphasia and wh a nau is the key to aphasia therapy. It has a profound impact on the success of therapy and sat-isfaction with therapy. Several participants spoke fondly of their SLPs, although they were not always able to recall exactly what had happened in therapy. Bobby described her SLP as “ really neat ” , but, after being reminded that she had in fact received therapy, she could only remember it as “ er lot of er talking ” . Noeline ’ s daughter described the SLP as “ so cool ” and Jack said his SLP was “ ah good ah helping me ” . Christine also spoke highly of her SLP:

Christine : she good, a lady was good to me Interviewer : Is that the speech therapist? Christine : yeah nods . Yeah.

Nan and Makere had contrasting experiences of the therapeutic relationship. Together they demon-strate the impact of relationship on language therapy. Nan received therapy at a university clinic, where she had a very good relationship with the SLP students. Nan ’ s family would joke that she was going to uni-versity to get a diploma, so the students presented her with a certifi cate at the end of the block of ther-apy. Nan valued the certifi cate highly and her chil-dren had it framed and placed on the family wall. Nan and her wh a nau appeared to value the trip to the university and the relationship with the student therapists above the content of the therapy sessions. One daughter, however, commented that “ Ma ’ s get-ting bored ” and another said “ We ’ re not sure whether we ’ re going to go again ” , despite Nan being less than 1 year post-stroke and on her second short block of therapy. These comments suggest that Nan ’ s rela-tionship with the student therapists was vitally important for her receiving language therapy. If she had not valued the relationship so highly she might not have attended therapy for as long as she did.

There were many diffi culties in the relationship between Makere and her SLPs. The root of the prob-lem was that the SLPs did not acknowledge Mak-ere ’ s language, worldview, and intelligence, and did not enable her and her wh a nau to understand what SLPs do and why. Makere ’ s son described the result-ing situation:

You ’ d say “ Oh look we ’ re off to the hospital now, we ’ re gonna see a speech therapist ” and she was like “ oh, no, let ’ s go to town ” … but we ’ d take her up there and she was very much disinterested.

An additional problem for Makere was that she experienced a change of therapist during her block

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Maori experiences of aphasia therapy 7

However, the SLP, who was in control of the therapy session, still did not understand that Makere had answered correctly. Therefore, Makere did not have the opportunity to demonstrate her ability.

Makere ’ s son reinforced this point when he described having to “ jump through all the hoops ” to get help for his mother. A process he described as having “ no M a ori-ness about it ” . He refl ected on whether he should have asked the SLP to provide M a ori therapy resources:

I don ’ t know where you draw the line between M a ori things and what should happen in a P a keh a [non-M a ori] world or Westerner world

This quote shows that, because the health system had “ no M a ori-ness about it ” , Makere ’ s son wasn ’ t sure if he could expect, or even ask for, M a ori con-tent in the therapy sessions, even when he knew that would be best for his mother.

The speech-language pathology setting

Participants described various therapy locations and how these had the potential to either enhance or diminish their aphasia therapy experiences. The set-ting of the therapy contributed directly to the thera-peutic relationship and infl uenced the kind of therapy that could be delivered. Makere had to attend a hos-pital clinic for aphasia therapy because there was no community service in her area. She found the clinic environment detrimental to the therapeutic relation-ship and a barrier to participating in therapy. Her son suggested an approach that would have been preferable:

You could ’ ve got around it a lot easier as a speech therapist if it was conversational and there was a fairly relaxed environment — lounge or kitchen, a caf é , or anything but an offi ce.

At the time of Hone ’ s interview he had been going to weekly therapy at a hospital clinic for over 4 years. It was a positive experience for him and he valued the exercises done in the therapy sessions. Hone ’ s wife appreciated the SLP ’ s persistence and the fact that the SLP “ stuck with us through endurance ” when “ she could have given up long ago ” . Even with on-going therapy, Hone had very limited expressive language ability. Despite this, he continued to be involved in his community. After the stroke his wife approached the kura kaupapa M a ori (M a ori immer-sion primary school) where he had been working and they welcomed him back in a voluntary capacity. His wife credited this voluntary job with keeping them both “ sane ” . Hone also retained his role on a local sports committee and as chairman of the marae trust board. His wife was concerned about his ability to fulfi l his role on the trust board, but his fellow trust-ees supported him:

I always say to him “ you can ’ t talk so you shouldn ’ t really be the chair ” , but the other trustees told me … “ you don ’ t have to talk ” .

Because there was no community SLP service available in Hone ’ s area, his SLP was limited in the way she could help him and his community. Although Hone and his wife valued his therapy ses-sions, they were entirely separate to his community life, just something he did once a week by himself. Fortunately for Hone, his community recognized his skills and made use of them, despite his severe aphasia. They achieved this without the guidance of an SLP.

Part of the role of the SLP is to determine the best method of service delivery for the individual and their wh a nau at each point in time, within the con-fi nes of their workplace service delivery model. How well the SLP does this contributes to the therapeutic relationship. Makere enjoyed attending kaum a tua (elders) group (this was initiated by her wh a nau not by the SLP). Latimer, Jack, and Christine were all members of aphasia groups and enjoyed the whanaungatanga (relationship, sense of belonging) gained from attending. Margaret enjoyed singing in a choir for people with neurological conditions. Sam did not enjoy aphasia group, but he was grateful for the whanaungatanga he experienced when the SLP arranged for him to have joint therapy sessions with an old friend of his, who also had aphasia.

Aphasia resources

Some participants described their SLPs providing therapy materials and tasks that they valued and enjoyed. Such resources usually demonstrated that the SLP recognized the interests and personalities of the person with aphasia and wh a nau. Christine was happy to work hard at traditional therapy exer-cises and she and her husband would go over and over the exercises in their own time. Sam appreci-ated the way his SLP based therapy sessions around playing card games. Jack was grateful that, along with the occupational therapist, his SLP encouraged him to play his clarinet again. Christine, Sam, and Jack all reported having good relationships with their SLPs. It is likely that the use of appropriate resources contributed to these benefi cial therapeutic relationships.

In contrast, the poor therapeutic relationship that Makere experienced was due in part to the use of inappropriate therapy resources. As was introduced earlier, Makere ’ s daughter recounted a situation in which Makere was given a reading passage that was totally unsuitable for her:

The story was, I think it was about New York and ducks at New York and my Mum, she at the time blurted out with “ But I ’ m from Hauiti and we have shags! ” ... You know, the context of the story that she

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8 K. M. McLellan et al.

had to read and understand, it wasn ’ t something that she was remotely interested in at all.

Shags are seabirds that frequent the coast and river in Tolaga Bay, the geographic centre of Makere ’ s tribal group, Te Aitanga-a-Hauiti. By using a resource that Makere was not interested in, the SLP was not acknowledging Makere ’ s identity through her ties to her family and land. This was detrimental to the therapeutic relationship and, therefore, to the success of therapy.

In addition to not being in te reo M a ori and not being in keeping with their worldview, Makere and her wh a nau also felt that the therapy resources did not refl ect the “ very capable woman ” that she was. Makere ’ s son said that the SLP treated her as “ the dumbest of the dumb ” . He formed this opinion based on the resources used in therapy, which he called “ primary school age ABCs type of thing ” . He suggested that a more laid-back conversational approach would have been preferable, using every-day items like magazines and talking about relevant topics such as news and current events.

Is this as good as it gets?

This fi nal theme is the second part of the wh a nau ’ s approach to therapy. It encompasses the different quandaries that people with aphasia and wh a nau members found themselves in — being concerned that they did not receive enough therapy, or the right therapy, and wondering whether it was worthwhile continuing with therapy.

Margaret ’ s brother remembered her language therapy in hospital being “ very erratic ” :

My daughter spoke to a speech-language therapist at one stage and asked if there could be a regular mon-itoring of [Margaret ’ s] progress and … I think she was told that no, that wasn ’ t their modus operandi.

On a return visit to Sam during the research process he expressed disappointment that the SLP service to his town had just been terminated. He had been told that this was due to lack of funding. Most discussions about access to health services are centred on the public health system, but the problem can be wider than that. Makere ’ s family tried to engage the services of a private SLP for some addi-tional input. Unfortunately they were unable to fi nd one in their area.

During their interviews many families still won-dered if there was more they could have done or could be doing to help with language rehabilitation. Hone ’ s wife spoke about how much work her sister had done with Hone while he was in hospital and how much progress he had made. She expected that Hone would have kept improving if her sister had been able to continue working with him — “ I often think back and refl ect and think ‘ gosh if I had [sister]

he ’ d have been talking by now ’ ” . Makere ’ s son refl ected on whether his wh a nau should have insisted that their mother receive therapy in te reo M a ori:

We probably could ’ ve spoken up, but if it ’ s your fi rst time through a process you don ’ t know what the process involves until you ’ ve actually completed the process. And by then you can ’ t really go back and say “ hey, let ’ s go back to step one and do it in M a ori ” .

Makere ’ s wh a nau continued trying to do language exercises with her, although her daughter recognized that “ we ’ re using stuff that we learnt 8 years ago ” because they had not had access to an SLP to get an updated program. Her son explained his on-going feeling that they should be doing more for Makere, even though her language was unlikely to improve:

We ’ ve come to the understanding that Mum ’ s condi-tion is not going to get better … and this is as good as it gets. So we live with “ this is as good as it gets ” ... Communication-wise we could probably try repet-itively doing the cue cards and fl ash cards and all those sort of things ... we pull them out every now and again and have a go with them … we probably need to get better cards or more cards.

At the time of Nan ’ s interview she was less than 1 year post-stroke and her daughters were wondering whether to accept the additional block of language therapy she had been offered. The severity of Nan ’ s aphasia and apraxia was evidenced by the large amount of wh a nau support she needed to participate in her interview. Her family reported that she had not received language therapy while she was in hos-pital. The reasons for this were unclear, but the fam-ily did not question it. When deciding whether to continue with outpatient therapy, Nan ’ s daughters recognized that therapy is hard work, particularly for an elderly person who is already unwell. They wanted to know how much Nan could expect to gain before deciding whether more therapy would be worth-while. Like Nan ’ s family, Christine ’ s husband was starting to question the purpose of Christine receiv-ing more language therapy. Three years post-onset of aphasia he was looking for a cure and, if language therapy could not offer a cure, he did not want to pursue it.

Relationship between the themes

The relationship between these themes is depicted in Figure 1. An explanation of the fi gure follows.

The therapeutic relationship between SLP, person with aphasia, and wh a nau is central to the success of aphasia therapy. This relationship is directly and indirectly infl uenced by the degree to which the SLP appreciates the worldview of the person with aphasia and wh a nau. This can only happen if the SLP fi rst appreciates his/her own worldview. Directly, the rec-ognition of worldview shapes the way clinician and

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Maori experiences of aphasia therapy 9

clients interact during therapy encounters. Indirectly, it infl uences the setting of the therapy and the resources used, which in turn shape the relationship. In addition, the therapy setting and resources inde-pendently infl uence the therapeutic relationship. In this model, therapy setting and resources are exter-nal factors, which are often dependent on funding and processes outside the SLP ’ s control. In contrast, the appreciation of worldviews is dependent on the SLP ’ s attitude and experience. This internal factor requires refl ective practice, which is limited only by the SLP ’ s time and motivation.

The wh a nau ’ s approach to therapy has two themes, which are somewhat time bound. Entering into ther-apy, participants demonstrated that they took respon-sibility for the rehabilitation of the person with aphasia, but that they needed the guidance of an SLP ( “ we ’ re happy to do the work but we can ’ t do it alone ” ). Emerging out of the therapy experiences is the question “ Is this as good as it gets? ” In this theme, wh a nau refl ected on the therapy they had received and whether they would benefi t from more therapy.

Discussion

We have explored experiences of language therapy for M a ori with aphasia and their wh a nau members, an area that has not previously been documented. This study will not only advance knowledge, but should inform practice (aligning with an interpre-tive description approach) and ultimately improve quality of care and aphasia outcomes for M a ori (thereby supporting the principles of kaupapa M a ori research).

M a ori with stroke have expressed the need for more SLP input during rehabilitation (Harwood, 2012), and M a ori with disabilities have stated that they need to be pro-active in order to receive services

(Wiley, 2009). While some participants in the cur-rent study expressed disappointment with the amount or type of language therapy they received, others did not. At face value, the majority of par-ticipants were satisfi ed with the therapy they received. However, the critical approach of kaupapa M a ori research calls us to look below the surface. In doing so we must consider whether participants were happy with the service they received only because, like the participants in the study of Arlidge et al. (2009), they did not know that they were entitled to anything bet-ter. The story about Hone returning to work is an example of this. His wh a nau did not tell this story as an example of inadequate SLP service. They told it to demonstrate who Hone is — his personality, identity, and achievements in spite of aphasia. It was only in the data analysis that the missed opportunity for SLP intervention became evident. Hone ’ s could have been a success story of SLP and wh a nau work-ing together cross-culturally to facilitate a person with aphasia integrating into their community. How-ever, it was not the SLP but wh a nau and community who helped Hone fulfi l his community roles. Although the SLP cannot be involved in every aspect of a person ’ s life, and wh a nau members often take responsibility for rehabilitation, Hone might have achieved these outcomes faster or more easily if SLP had been involved in the process. He was fortunate that his wh a nau and community were able to help him. Other M a ori with aphasia will not have this advantage and will require more SLP assistance.

This study found that aphasia therapy for M a ori relies on a few fundamental concepts — a collabora-tive process with wh a nau ( “ we ’ re happy to do the work, but we can ’ t do it alone ” ), a good therapeutic relationship, appreciating the worldview of the per-son with aphasia and wh a nau, and the use of appro-priate resources and therapy setting. Language rehabilitation for M a ori with aphasia requires a col-laborative approach. The SLP ’ s role, therefore, is to

Figure 1. Experiences of aphasia therapy.

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10 K. M. McLellan et al.

set up the person with aphasia and wh a nau with edu-cation about aphasia and language therapy, provide appropriate therapy tasks, make sure the purpose of each task is understood, then provide guidance as required. Many wh a nau members will willingly put in hours of time and effort, as they are able.

In the current context, SLPs would be unwise to expect M a ori with aphasia and wh a nau members to be forthright about their goals and expectations for therapy. Harwood (2012, p. 144) described the way M a ori with stroke “ stood their ground ” against “ systematic, interpersonal, and internalized dis-crimination ” , but also recognized that “ [m]aking a stand in the situation of clinical encounters is extremely diffi cult ” (p. 149). Similarly, Arlidge et al. (2009) identifi ed that, in the unfamiliar hospital environment, M a ori parents felt they were unable to be pro-active in asking for help for their injured children. In the current study many participants with aphasia and wh a nau members were not famil-iar with what SLPs do for aphasia and how the rehabilitation process works. This reinforces the on-going need to increase public awareness of aphasia (McCann, Tunnicliffe, & Anderson, 2013) and health literacy (Robson, 2002). Even Makere ’ s assertive, educated wh a nau described feeling largely powerless, which was demonstrated by her son ’ s description of being unable to advocate for his mother because he was unfamiliar with the therapy process. This narrative refl ected not only a lack of cultural fi t but also a lack of cultural safety.

The therapeutic relationship is of utmost impor-tance for M a ori with aphasia. Nan continued attending therapy because of a positive relationship with her therapists. In contrast, Makere tried to avoid therapy because of a negative relationship. This echoes the fi ndings of Byng, Cairns, and Duchan (2002) and Hersh (2004, p. 102) who reported that “ for clients, aphasia therapy and the personality and style of the aphasia therapist were deeply entwined ” . Part of establishing a therapeutic relationship is using appropriate therapy materials. That is, because aphasia therapy and the SLP are entwined, the resources used in therapy demon-strate to the person with aphasia the therapist ’ s view of them. In Makere ’ s case we cannot know what the SLP actually thought about Makere ’ s abil-ity. S/he had probably used the “ ducks in New York ” passage with multiple different people with aphasia and never stopped to consider the appropriateness of it. However, what matters is the message that Makere and her family received. The resources that were used led Makere ’ s wh a nau to believe that the SLP thought she was “ dumb ” . For Jack and Sam, when the SLP tailored the therapy to their interests, it showed them that she recognized their individual personalities and identities. The impact of using appropriate or inappropriate therapy materials has been illustrated by Hersh (2009) and Parr et al. (1997). Similar to the use of appropriate resources,

an appropriate location and style of service delivery is also important. Armstrong et al. (2012) suggested that Aboriginal people with aphasia might benefi t from aphasia education or language therapy being delivered through existing community groups, rather than a separate SLP service. The community involvement of many participants in the current study indicates that this might also be a fi tting approach for some M a ori with aphasia.

Further considerations

A strength of this study is the combined use of kau-papa M a ori research and interpretive description. The use of an applied qualitative methodology within a M a ori research approach facilitated a study that tells the stories of M a ori with aphasia and their wh a nau members while enabling SLPs to learn from them. The fi ndings are clinically applicable and rel-evant both to M a ori communities and clinicians. The critical approach of kaupapa M a ori research revealed problems that were not overt, while the disciplinary grounding of interpretive description ensured that practical learning for SLPs can be taken from the situation. Another strength is that people with apha-sia and family members were interviewed together. This allowed different perspectives to be given as wh a nau told their story as a group.

A limitation of this study is that most participants were recruited via their SLPs. Therefore, they were aware that the interviewer knew their SLP. Even though participants were assured of confi dentiality, they might have withheld negative experiences for fear of their SLP fi nding out. Similarly, participants were aware that the interviewer was an SLP and may have not have wanted to cause offence. However, participants appeared to be candid in their com-ments, as one said:

I think they were a bunch of losers these therapists, not saying that you are, but the ones that we encoun-tered.

The data in this article were drawn from a larger study focusing on the experiences of M a ori with aphasia and their wh a nau. Therefore, this article consists of interpreted descriptions of participants ’ experiences. The experience of language therapy is one part of aphasia (although for most wh a nau it was only a small part). Few participants offered rec-ommendations for ways to improve language ther-apy for M a ori with aphasia. The main focus was on participants ’ experiences, both good and bad. Because there is no existing literature about M a ori experiences of aphasia or speech-language therapy, it was necessary to lay the foundation for future research by describing and interpreting the current situation. The kuia who provided guidance for this project recognized that the fi ndings are likely to ben-efi t all people with aphasia, and she asked that the

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Maori experiences of aphasia therapy 11

Armstrong , E. , Hersh , D. , Hayward , C. , Fraser , J. , & Brown , M . (2012) . Living with aphasia: Three Indigenous Australian stories . International Journal of Speech-Language Pathology , 14 , 271 – 280 .

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Cram , F . (2001) . Rangahau M a ori: Tona tika, tona pono – The validity and integrity of M a ori research . In M. Tolich (Ed.) , Research Ethics in Aotearoa New Zealand: Concepts, Practice, Critique (pp. 35 – 51) . Auckland: Pearson Education New Zealand .

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Harwood , M . (2012) . Understanding and Improving Stroke Recovery for M a ori and Their Wh a nau. (Unpublished doctoral disserta-tion), The University of Otago, Dunedin .

Hersh , D . (2004) . Ten Things our Clients Might Say about their Aphasia Therapy .. if only we asked. ACQuiring Knowledge in Speech, Language and Hearing, 6 , 102 – 105 .

Hersh , D . (2009) . How do people with aphasia view their discharge from therapy? Aphasiology , 23 , 331 – 350 .

Lowell , A. , Maypilama , E. , Yikaniwuy , S. , Rrapa , E. , Williams , R. , & Dunn , S . (2012) . “ Hiding the story ” : Indigenous consumer concerns about communication related to chronic disease in one remote region of Australia . International Journal of Speech-Language Pathology , 14 , 200 – 208 .

McCann , C. , Tunnicliffe , K. , & Anderson , R . (2013) . Public aware-ness of aphasia in New Zealand . Aphasiology , 27 , 568 – 580 .

McLellan , K. , Harwood , M. , McCann , C. , Crengle , S. , & Worrall , L . (2013) . The use of interpretive description within kaupapa M a ori research . Manuscript submitted for publication .

McLellan , K. , McCann , C. , & Worrall , L . (2011) . M a ori with aphasia: A people without a voice? New Zealand Medical Journal , 124 , 48 – 57 .

Minister for Disability Issues . (2001) . The New Zealand Disability Strategy: Making a World of Difference Whakanui Oranga . Wellington, New Zealand: Ministry of Health. http://www.odi.govt.nz/documents/publications/nz-disability-strategy.pdf.

Minister of Health and Associate Minister of Health . (2002) . He Korowai Oranga: M a ori Health Strategy . Wellington, New Zealand: Ministry of Health. http://www.health.govt.nz/publication/he-korowai-oranga-m a ori-health-strategy.

Musolino , G. M. , Babitz , M. , Burkhalter , S. T. , Thompson , C. , Harris , R. , Ward , R. S. , et al . (2009) . Mutual Respect in Healthcare: Assessing Cultural Competence for the University of Utah Interdisciplinary Health Sciences . Journal of Allied Health , 38 , 54E – 62E .

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Parr , S. , Byng , S. , Gilpin , S. , & Ireland , C . (1997) . Talking about aphasia: Living with loss of language after stroke . Buckingham; Philadelphia: Open University Press .

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participants ’ stories contribute to the “ bigger picture ” that is aphasia research.

This article has addressed aphasia therapy from the perspective of M a ori with aphasia and wh a nau members. The picture is not complete without also considering the perspectives of SLPs. Future research will incorporate the fi ndings of this study, and the wider study from which they came, with analysis of the experiences of SLPs who provide therapy for M a ori with aphasia. With a focus on clinical applica-tion, more targeted questions and discussion points can then be developed and used to inform solutions-focused research involving M a ori with aphasia, wh a nau members, and SLPs, to benefi t the wider aphasia community.

Conclusion

The fi ndings of this study show that, while some M a ori with aphasia receive a service that is accessible and respectful of their culture, others do not. Many receive a service that is somewhere in between — it is not inaccessible or disrespectful, but it could be greatly enhanced with attention to a few fundamen-tal concepts. Culturally-safe therapy for M a ori with aphasia stems from a mutually respectful therapeutic relationship. It is a collaborative process in which wh a nau are supported to undertake their rehabilita-tion in a style that suits them, using resources that affi rm their identity.

Acknowledgements

We thank the people with aphasia and their wh a nau who participated in this research. The following wh a nau asked to be acknowledged by name: L. Brown, N. Brown, Cornwell, Hoto, Nikora, Potaka, Te Miha, Wanakore. We especially acknowledge the special contribution made by Tumau Nikora and his mother Makere. We thank Dr Sue Crengle for assistance with this research. We are grateful for the following fi nancial support: University of Auckland doctoral scholarship, Henry Rongomau Bennett scholarship, the Tavistock Trust for Aphasia. The content of this paper was originally presented at the 15 th International Aphasia Rehabilitation Conference, Melbourne, October 2012.

Declaration of interest: The authors report no confl icts of interest. The authors alone are respon-sible for the content and writing of the paper.

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Appendix: Glossary

Hauiti The geographic centre of the tribal group Te Aitanga-a-Hauiti, in Tolaga Bay on the East coast of the North Island of New Zealand

Kaitiaki CaretakerKaum a tua EldersKaupapa M a ori M a ori ideologyK o rero Narrative, talk, to talkKuia Female elderKura kaupapa M a ori M a ori immersion primary schoolKur ı DogM a ori The Indigenous peoples of New

ZealandMarae Traditional meeting placeP a keh a Non-M a ori, usually used to refer to

New Zealand EuropeansRangahau wh a nau Literally “ research family ” . Research

advisory groupTe Aitanga-a-Hauiti A tribal group from Tolaga Bay on the

East coast of the North Island of New Zealand

Te reo M a ori, te reo The M a ori languageWhakaaro Thoughts, opinions, feelingsWh a nau (Extended) familyWhanaungatanga Relationship, sense of belonging

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