http://informahealthcare.com/dre ISSN 0963-8288 print/ISSN 1464-5165 online Disabil Rehabil, 2015; 37(16): 1462–1469 ! 2014 Informa UK Ltd. DOI: 10.3109/09638288.2014.972581

RESEARCH PAPER

Communication disorders after stroke in Aboriginal Australians Elizabeth Armstrong1, Deborah Hersh1, Colleen Hayward2, and Joan Fraser1

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1

School of Psychology & Social Science, Edith Cowan University, Perth, Australia and 2Kurongkurl Katitjin, Centre for Indigenous Australian Education and Research, Edith Cowan University, Perth, Australia Abstract

Keywords

Purpose: Limited research exists on acquired communication disorders (ACD) in Aboriginal Australians despite their high rates of stroke. Their uptake of rehabilitation services is low, and little information is available on functional consequences for this population. This pilot study explored consequences of ACD for Aboriginal Australians after stroke, including their experiences of services received. Method: Semi-structured interviews were collected with 13 Aboriginal people with ACD, and family members, in Perth. Ages ranged from 30 to 78 years and time post stroke from 0.5 to 29 years. A qualitative, thematic analysis of interview transcripts was undertaken. Results: The key themes which emerged were ‘‘getting on with life’’, coping with change, independence/interdependence, the importance of communication for maintaining family and community connection, role and identity issues and viewing the stroke consequences within the broader context of co-morbidities. Conclusions: While similar life disruptions were found to those previously reported in the general stroke population, this study highlighted differences, which reflect the particular context of ACD for Aboriginal people and which need to be considered when planning future services. While implications are limited due to small numbers, the findings emphasise the importance of a holistic approach, and integration of communication treatments into community-led social activities.

Aboriginal, aphasia, Australia, communication disorders, stroke History Received 7 April 2014 Revised 27 September 2014 Accepted 30 September 2014 Published online 3 November 2014

ä Implications for Rehabilitation 





Aboriginal Australians frequently experience a range of concurrent and complex co-morbidities and demanding social or family circumstances at the same time as coping with communication disorders post-stroke. A holistic approach to post stroke rehabilitation may be appropriate with services that accommodate communication disorders, delivered in collaboration with Aboriginal organisations, emphasising positive attitudes and reintegration into community as fully as possible. Communication and yarning are important for maintaining family and community connection and identity, and family and community context should be incorporated into all assessment and treatment activities.

Introduction Limited research exists in the area of communication disorders acquired as a result of brain injury in Aboriginal and Torres Strait Islander Australians (hereafter Aboriginal Australians) and in Indigenous peoples generally. In the general population, individuals with acquired communication disorders (ACD) post-stroke are known to suffer from increased anxiety, depression and loss of identity compared to stroke patients without this condition [1]. They also have ongoing issues related to social isolation, lack of employment prospects, reduced ability to engage in everyday activities and significant family disruption [2]. While data are available on incidence, mortality and risk factors for stroke in Aboriginal Australians [3–5], relatively little information is

Address for correspondence: Elizabeth Armstrong, School of Psychology & Social Science, Edith Cowan University, 270 Joondalup Drive, Joondalup, Western Australia 6025, Australia. Tel: 61 8 6304 2769. E-mail: [email protected]

available on functional consequences in this group. Exceptions to this lack of information include an article related to the stories of three Aboriginal men with aphasia after stroke [6]. These stories constitute preliminary case reports related to the larger study being described in this paper. Another article discussing rehabilitation services across Australia briefly describes an Aboriginal man with global aphasia and associated difficulties particularly related to the fact that he did not speak English and there was no available interpreter who could communicate with him in his Aboriginal language [7]. A similar situation exists internationally, with two studies focused on ACD in the Maori population in New Zealand [8,9], and a US case study describing a Native American’s experience of aphasia [10]. The recent studies from New Zealand report a similar lack of information available on Maori with aphasia after stroke as in the Aboriginal Australian context [8]. However, in-depth interviews conducted with Maori and whanau (extended family) [9] have revealed the significant impact of aphasia on both the individual and their family in terms of dramatic changes to roles and relationships, but

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with the status of the person with aphasia within the community being maintained. Family/community appeared to assume a responsibility for the ‘‘management’’ of the communication disorder in terms of enabling the person with aphasia to continue to actively participate in community life. The US paper provided a case study of a Navajo man with aphasia as a result of head trauma. It described ways in which traditional Navajo healing practices were embraced by health providers and incorporated into the individual’s overall care plan. This lack of focus on ACD in the Indigenous research literature is concomitant with the low uptake of clinical speech pathology services by Aboriginal Australian adults [11]. Given that incidence of stroke in Aboriginal people is up to three times higher than in non-Aboriginal people [4], and that over 30% of people after stroke will have aphasia specifically [12], it could be anticipated that there should be a significant number of Aboriginal Australians experiencing a communication disorder. The fact that Aboriginal stroke patients are also more likely to be dependent at discharge [13] and are known to experience stroke at a younger age than their non-Aboriginal counterparts [4] also suggests that Aboriginal people are likely to be experiencing significant issues in their everyday lives as a result of stroke and related ACD. The potential reasons for non-uptake of a range of health services by Aboriginal Australians are likely to result from a combination of cultural, linguistic and historical issues [14,15]; however, to date, these have not been explored in relation to speech pathology services. As speech pathology services focus on language, it is important to note that over 145 different languages are spoken within Aboriginal and Torres Strait Islander communities across Australia [16] and Aboriginal English (a dialect of Standard Australian English) is also used widely in metropolitan and rural areas. The complexities associated with language differences have a potentially greater impact in this area than in the broader range of health services and raise specific challenges both in terms of diagnosis and subsequent treatment options. The purpose of this study was to explore Aboriginal Australians’ experiences of ACD in terms of functional and personal consequences as well as their experiences of speech pathology and other services received after stroke. Discovering how Aboriginal people and their families cope with ACD and how they view such disorders and associated services will inform potential ways of making speech pathology services more relevant, accessible and culturally appropriate for this group.

Methods An Aboriginal Reference Group was established to guide the project. The group consisted of eight members including health workers from a Perth-based Aboriginal Medical Service, Aboriginal Services sections of local non-government agencies and the Western Australian (WA) Department of Health, a member of the Aboriginal Health Council of WA, and the Aboriginal research assistant employed for the project. Three of the members had relatives who had had strokes, two had experienced strokes themselves and all had experience with Aboriginal people after stroke through their work. Ethics approval for the study was obtained from the WA Aboriginal Health Information and Ethics Committee (ID: 315 10/10), the WA Department of Health Southern Metropolitan Area Health Service Human Research Ethics Committee (ID: 2010/99), the Royal Perth Hospital Ethics Committee (ID: EC 2010/099) and the Edith Cowan Human Research Ethics Committee (ID: 5589). Participants The project was conducted within the Perth metropolitan area as a pilot study. Inclusion criteria were presence of an ACD, but with

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sufficient verbal/written expression to participate in a supported interview [17], a minimum of three months post stroke and English speaking. Exclusion criteria included presence of dementia or degenerative neurological disease. Participants were recruited through speech pathology hospital departments and community referral. Recruitment was slow initially for a number of the following reasons: (1) People who had been seen in Perth hospitals had often selfdischarged against medical advice and had not returned to the hospitals for rehabilitation. They were not always easy to contact for reasons such as moving to another address, changing telephone numbers or not being contactable by phone. (2) Many patients on record in Perth hospitals were from rural areas and had returned to the country after discharge from hospital in Perth. (3) The majority of Aboriginal people who were seen by speech pathologists after their stroke in Perth hospitals were reported as having swallowing difficulties rather than communication problems. (4) Some patients had such severe concomitant medical problems that they were not considered suitable for the project at that time. A convenience sample was used at first to begin the study, with subsequent snowball sampling [18] involving personal contacts of the reference group and research assistant. All participants gave written informed consent to participate in the interviews. As the majority of referrals did not come from hospitals, medical histories were sometimes difficult to obtain, and specific diagnoses were not always clear at the outset. For example, a family member might report that the person had a speech problem, but it was not clear if this was aphasia or dysarthria (a speech problem caused by oral motor difficulties). Diagnosis of ACD and severity ratings for those referred through hospitals were confirmed on the basis of a speech pathology report. Diagnosis and severity ratings of community participants were made through a combination of medical history as reported by the participants (supplemented by medical records if these could be obtained) and rating of participants’ speech by two of the research team (who were experienced speech pathologists) listening to the audiotapes of the interviews post hoc. Formal diagnostic language testing was not felt to be appropriate due to a number of reasons: there are currently no assessments available that are culturally appropriate for testing language disorder in an Aboriginal Australian context; there were sensitivities involved in recruitment of people not necessarily involved in or wanting speech pathology services; and there is an increasing focus on discourse analysis as a viable assessment method within speech pathology [19–21], which made assessment through discourse a viable option. Data collection An Aboriginal research assistant with enrolled nursing and interviewing experience conducted semi-structured interviews with participants who included both people with ACD and their relatives. In preparation for this study, she received 15 hours of training on the nature of ACD and ways of communicating with people with ACD based on Supported Conversation principles [22]. This included face to face discussions, watching DVDs, meeting with two people with aphasia to discuss their experiences and through relevant articles and book chapters. In addition, throughout the process, ongoing discussion of the interviews occurred between the research assistant and the researchers, which allowed for further development of knowledge and skills in the area.

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The interviews were almost all conducted in interviewees’ homes, with follow-up interviews conducted where possible to clarify and expand on issues raised in the first interview. The interview questions aimed to elicit discussion of participants’ early experiences after stroke, barriers and facilitators encountered, experiences of communication difficulty in everyday life, attitudes of family and others towards the person with the ACD, hospital experiences and experiences of speech therapy. Supported conversation principles were incorporated into all interviews so that participants with varying severities of ACD could engage in the process. This included providing materials to allow people to indicate their answers non-verbally if necessary (pen and paper, pictures and other visual items to point to); giving the person plenty of time to respond; simplifying questions as necessary to assist the comprehension of the person with aphasia (comprehension being typically affected by aphasia); using familiar, high frequency words; and providing short breaks if the person with aphasia appeared tired or lost attention. The person with aphasia and their family were given the opportunity to be interviewed separately or together. All those with available family members opted to be interviewed together with their relative(s). Data analysis The interviews were audiotaped and transcribed orthographically. Non-verbal behaviours (e.g. gestures and facial expressions) were noted by the interviewer as supplementary expressions of meanings. The transcribed data were then read and re-read multiple times and coded according to qualitative thematic analysis [23]. Initial codes consisted of recurring meanings, comments and ideas, which were of clear importance to participants. Similar codes were grouped in order to develop a set of clearly defined response categories [24], and key themes drawn from these categories were discussed between the researchers in detail both within each case and later across the cases [25]. As noted above, recruitment to this pilot study was slow initially and the number of participants anticipated was small. While the researchers did not believe they had reached saturation of possible themes, the analysis was starting to show similar recurring issues emerging from the interviews and, even where there were significant language impairments, there were rich stories to explore through the thematic analysis. At times, the nature of the participants’ communication difficulties necessitated perhaps a greater degree of reliance on triangulation with family interviews as well as interpretation of meanings than would normally be the case in qualitative interviewing and analysis. Interpretation by the researchers in this circumstance obviously brings with it some possibility for bias or misinterpretation. However, interpretations were checked with the participants where possible during and after the interviews (only one participant was available for a second interview during which material from the first interview was checked with the participant, and one relative was available for subsequent checking and discussion), and the interviews were adapted to be as accessible as possible [22]. In accordance with suggestions to enhance qualitative methodological rigour, peer checking of emerging themes was also conducted by the research team and offered for discussion with the reference group [18]. While quotes will be supplied in the Results section that support the identification of these themes, the nature of some of the participants’ communication difficulties also necessitates the reporting of these themes in an adapted, more readable form. In terms of the quotes, rather than citing numerous and lengthy attempts at a proposition, interrupted by re-tries, self-corrections and jargon words, quotations have, at times, been edited in order

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to convey the meanings more coherently to the reader. The use of ‘‘. . .’’ below shows that a pause has been used or that an error word or unsuccessful attempt at a word has been removed.

Results Thirteen Aboriginal people with ACD participated in the interviews. Seven relatives were also interviewed with their family member present at their request, but only four subsequently consented to their contributions to the interview being used. Participants with ACD came from different language groups in Western Australia – Noongar, Yamatji, Balloruk and Wongi. There were eight women and five men, and they ranged in age from 30 to 78 years. Time since their strokes ranged from 6 months to 20 years, with one woman having her stroke at 20 years and another at 30 years of age. While age at the time of the stroke ranged from age 20 to 72 years, the majority occurred in the 30– 50 year age group (Table 1). Seven people were clearly identified as having aphasia on the basis of diagnosis by the researchers from the audiotapes and/or medical notes, two were suspected of having mild aphasia in the past (as identified through their recounts during the interview) and four others had dysarthria, as evidenced in the audiotapes. Relatives participating in the interviews included the daughters of PD1 and PD2, the sister of PA4 and the mother of PA1. Age range of the relatives was 29–54 years. A community worker who accompanied one of the participants with limited speech (PA3) to the interview was also interviewed. The key themes identified in the interviews are depicted in Figure 1. There was some overlap in the content of the themes. For example, references to ‘‘coping with change’’ were also obviously related to changes in independence and role and identity issues. Hence, while represented separately for the purpose of clarifying specific issues, the authors acknowledge the inter-relationship between several of the ideas expressed. ‘‘Getting on with life’’ A theme of ‘‘getting on with life’’ and maintaining a positive attitude was a predominant theme. Four of the five participants with long-standing aphasia were involved in a variety of community participation activities including library groups, karaoke, women’s yarning groups, art classes and craft groups. Most were groups conducted through Aboriginal organisations and only one (organised through a government department) focused on people with disabilities specifically. The fifth participant (mild aphasia only) did not engage in community group activities, but focused on maintaining his health through regular medical and pharmacy appointments, ensuring he was following through on all advice. The remaining two participants with aphasia of relatively recent origin were not engaging in structured activities but emphasised the importance of family and friends in their recovery. The participants with dysarthria did not report significant engagement with activities outside their immediate families but again stressed the need for a positive attitude to get on with life. The theme is exemplified in quotes contained in Figure 1. PA3 had a stroke immediately after the birth of one of her children 15 years prior to the interview and had managed to raise two children for several years on her own after she and her partner separated. She had virtually no speech and a hemiparesis but was able to walk independently. Through gesture, facial expression, some writing and responding to yes/no questions, she indicated that she had successfully managed her disability and did not appear overly focused on or concerned about her impairments. She was participating in local community groups and was very

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Table 1. Characteristics of participants with ACD.

Participant

Gender

Age

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People with aphasia PA1 F PA2 PA3 PA4 PA5 PA6

F F M M M

50 45 63 47 52

Noongar/ Yamatji Noongar Noongar Noongar Yamatji Yamatji

PA7

M

60

Noongar

People with PSA1 PSA2 People with PD1 PD2

30

Cultural group

suspected aphasia in past F 56 Yamatji F 53 Wongi dysarthria F 73 Noongar F 62 Noongar

PD3

F

58

Noongar

PD4

M

78

Balloruk

Years post stroke onset

Communication deficit

Physical status

Marital status

Living with . . .

Co-morbidities

Mild aphasia + mild dysarthria Mild aphasia Severe aphasia Severe aphasia Severe aphasia Mild aphasia

Hemiparesis

Single

Alone

Drug-related issues

Hemiparesis Hemiparesis Hemiparesis Hemiparesis NAD

Married Single Single Single Single

Husband Daughter Sister Alone Sister

Heart disease None reported Diabetes None reported Cardiomyopathy, hypertension Diabetes, kidney disease, hypertension

10

6

Mild aphasia

Hemiparesis/ wheelchair

Single

Alone

13 14

?Mild aphasia ?Mild aphasia

NAD Hemiparesis

Married Single

Husband Alone

None reported Heart disease

1 11

Mild dysarthria Mild-mod. dysarthria

Single Single

Daughter Daughter

Severe dysarthria

Hemiparesis Hemiplegia/ wheelchair Hemiparesis

Single

Son

Diabetes, hyper-tension Diabetes, heart disease, arthritis Kidney disease, diabetes, heart disease

Mild dysarthria

NAD

Single

Family

0.5 15 29 6 0.5

3 (original stroke 10 years ago) 2

Heart disease; diabetes

PA ¼ participant with aphasia; PSA ¼ participant with suspected aphasia; PD ¼ participant with dysarthria; and NAD ¼ no apparent difficulty; ? indicates Possible mild aphasia

intent on showing the interviewer photos of her grandchildren and her art (done at a local art group). Coping with change All participants reported enormous changes in their lives as a result of the stroke. Those who were working at the time of the stroke could no longer keep their jobs, some experienced relationship strain and some had to move to alternative accommodation. They experienced changes to their leisure activities and social lives. Some could no longer drive (see Figure 1 for quotes). Participants described different ways of coping with these changes. Most became dependent on family members or services to some extent, although independence was another theme that came through.PD1’s daughter raised issues about PD1’s family not coming to visit their mother as often as she thought they should, relating this to their inability to cope with her change since the stroke. Independence/interdependence In coping with change, all participants emphasised the need to be independent. However, family was constantly referred to during the interviews. While the majority of participants were single, most lived with family members, although three lived alone, including one man with a severe aphasia and hemiparesis and another with a mild aphasia and a hemiplegia. Contact with and assistance from family, however, appeared vital for most. For example, PA4 travelled independently around the city to various activities, but relied on his sister organising taxi vouchers and bus passes for him, organising his clothes, medications and so on. It was clear in this situation that PA4 had re-established a full and relatively busy life post stroke, but was heavily supported in this endeavour by his sister’s efforts. On the other hand, PA5 lived alone and while he had some contact with family, he appeared to manage on his own.

All participants emphasised the desire to be independent, but also highlighted the importance of social contact and practical assistance. As noted above, in terms of social contact, several of the longer-term post-stroke participants relied on community groups. PA3, for example, attended two local Aboriginal groups – one for craft and one a women’s group focused on young mothers in which yarning was the focus, but women of all ages attended. Neither was disability focused, and PA3 was the only person there with communication difficulties. However, both she and the community worker involved in the interview noted that she enjoyed the group and was definitely included in the conversations and activities. PA4 not only attended an art class for people with disabilities but also went regularly to an Aboriginal karaoke night at the local pub, to a local community shopfront centre, where he met people and had meals, and to local cafes. Two of the participants (PA5 and PA7) lived alone but had regular contact with family members. PA5attended the local library to help him with his reading after the stroke. Only one of the participants interviewed was living in either a married or defacto situation. One was widowed and living alone, one was living alone after divorce and another was living alone having not married, but lived close to her parents. Two (males) were living with their sisters and one female was living with her daughter. Except for PA5, who appeared to be quite independent, all others required assistance from either carers/ community workers and/or family members to retain an active community life. Importance of communication The importance of communication for social interaction and maintenance of family and friend relationships – yarning – was a major theme, but the person’s communication difficulty was only an occasional focus (of both the people with ACD and

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Figure 1. Key themes identified from the interviews.

THEME

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1. "getting on with life" (12 participants) I can do it I can’t stand uh… sittin’ around ” (PA5) Straight out…you can do it (PA5) I’d say you got to hang in there. That’s all there is to it. Just do it, whatever you got to do..do it (PA7) I thought about many times I thought about committing suicide eh… I was thinkin’ about doin’ that… ‘cos I just (----) it… So I thought uh my family’s too important so I’ll just work on that, work at it, work at it (PA6) So it’s nothing that I don’t stress over it it happened and there’s nothing I can do about it and I just look forward to try and better myself in that situation and other than that I’m yeah... I feel I’m on the road to recovery (PA2) Oh he keeps himself busy which is great you know cos if he stopped that I think he’d feel a lot different but he gets sick now and then and I tell him to stay home and um try and tie him down when he gets sick but he just goes (PA4’s sister) 2. Coping with change (11 participants) And I sort of get (---) depressed over it because my life, I lost the way I used to live. I had an exciting sort of life you know (PD4) Can’t do the things I used to do ...can’t get about town do you go shoppin at all…if I go in a wheelchair I can but I can’t walk around the shops no… it’s so hard (PD2) People don’t visit her anymore – um her children – I don’t think they can cope they don’t cope very well...they don’t seem to make the effort to get to know her as she is now rather than.........but the grandchildren, it doesn’t make no difference to them (PD1’s daughter) 3. Independence/inter-dependence (9 participants) Don’t need no help...yourself……b battin on b battin by myself (PA5)[meaning battling] I wanna be independent…I wanna be independent(PD3) Um I get his breakfast, make sure he takes his tablets um his tea when he comes back in the afternoon, his clothes all washed, doctor’s appointments, um cleaning his bed, make sure he’s changing all the time because he has um not only the stroke but he has high sugar and blood pressure as well. So I got to take care of that yeah (PA4’s sister) 4. The importance of communication and yarning for maintaining family and community connection (12 participants) Two daughters…lookin’ after my two daughters and my son in law important… I ring up…yarn yarn…straight out. (PA5) I don’t have very many friends an’ that but I go around all my family an that talkin to them, better than to shut myself out, I sorta…I thought it’s best to get out and people sorta work it out now...(---) talkin (PA6) So and even his girlfriend he’s got a new one and I haven’t met her for six months I think since they’ve been goin’ together and all of a sudden he brings her home. He tells me what her name is. I was cookin breakfast here one morning … I called her the ex [the ex-girlfriend’s name] five times inside of five minutes….and he looked at me and he said “shut up and cook breakfast”. And then after…she left he says “mum you get me into trouble. You gotta stop and realize what you say” and I said well you just better stop changing girls and I’ll remember every one! (PA2) 5. Role and identity (9 participants) I knew it wasn’t sorta like that I knew what I was doing but see I’m a strong sorta person you know that’s my life… I sorta found it a bit hard to do simple things that I couldn’t do y’know and I it was getting on my nerves (PA6) Because (---) I was a little anxious and wanted to get back try and get back to my old self again…(PD4) 6. Viewing the stroke consequences within the broader health context of co-morbidities (9 participants) …….because he had more major issues than havin the strokes… I mean high sugar diabetes (PA4's sister)

participating relatives). While discussion of speech and language ‘‘skills’’ did not feature a lot in the interviews, even following multiple prompts, several of the participants discussed the importance of yarning with family and friends. PA5 discussed how important it was to talk with his daughters and son-in-law in terms of looking after them, while PA6 discussed the importance of talking with family as a way of improving himself. The significance of communication in the lives of all participants was evident in their numerous social activities and reports of talking/yarning in various social groups and with family. PA4 attended a lot of activities, including the Noongar karaoke nights held at a local pub and talked with people in coffee

shops in his local shopping centre, and at an art class, despite his severe language difficulty. PA5 talked about how much he enjoyed being with his grandchildren, especially visiting his home town. He reported attending a social group one day per week – an activity group (involving games) at a centre that was for people with disabilities. He said he liked to ‘‘mingle’’ there and particularly with people of his age group there. As noted, PA3 attended social conversation groups even though she had very little speech. She reported being included in the conversations and enjoyed the group, and PA3 did not appear particularly concerned about her limited speech and did not report major difficulties with other people. Below is an extract from the

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interview where she was asked specifically about her speech difficulties: Interviewer: Do you ever get annoyed with people when they can’t understand? PA3: Oh no Community Worker: Maybe a little bit frustrated PA3: Yeah Interviewer: So do you use your pen and paper to write? PA3: Oh . . .. . . no (dismissive) Interviewer: No? Community Worker: Sometimes I guess Interviewer: What about friends? PA3: Yeah Interviewer: Did they find it hard because you couldn’t talk? PA3: No Interviewer: Did you write to communicate? PA3: No (laughed) Interviewer: What about now how do you feel about it? [the communication problem] . . . do you still . . .? PA3: Nah (indicating not really concerned now) Interviewer: You’re used to it? PA3: Yeah Interviewer: And what about your daughters . . .? PA3: yeah (smile) While few participants focused specifically on breakdown in their ability to find words, express themselves or manage changes to their ability to understand, read or write, PA2 did report an incident where she could not recall the name of her son’s new girlfriend. While this was portrayed as comical during the interview, PA2 also conveyed the difficulties this had caused within the family (Figure 1). When discussing his hospital stay after his stroke, PA6 reported being frustrated by his communication difficulties and feeling like a child at times when he could not do a simple task. None of the participants with ACD reported ongoing speech pathology services after leaving hospital. PA6 felt he could recover on his own, discharging himself from hospital and from ongoing therapy after one outpatient appointment. PA2 would have liked more therapy but said she was not followed up by the hospital. PA3 indicated that she would have liked more therapy early on, but reasons why this did not happen at the time were unclear. The accounts of the people with aphasia and dysarthria tended to raise similar communication issues overall. However, those with dysarthria talked more about their early frustration over their communication difficulties as well as their associated embarrassment. They also talked more about speech pathology exercises or activities undertaken during their hospital admission. Life roles/identity The importance of certain life roles/identity emerged in several interviews. Three of the participants mentioned their role as a parent responsible for their family as being of great importance in their recovery and still saw this as a major life role. Another participant with very limited speech (PA4) repeatedly pointed to himself saying ‘‘painter, singer . . . Jim Reeves, Hank Williams, Slim Dusty’’, which was clearly an important part of his identity. Throughout the two interviews undertaken with him, he also said repeatedly that he was Noongar. Discussion of his art and his achievements in having paintings hung in several galleries was his prime interest during the interview and the topic he initiated most. He also drew pictures within the interview to demonstrate the landscapes he enjoyed painting, which were related to where he

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grew up in a particular rural area. Having little speech, PA3 showed us her paintings and her family photos, which appeared to be her way of conveying who she was and what was important to her. PA6 also discussed how he found his aphasia difficult initially as he was unable to do ‘simple things’, an adjustment which was hard for him to reconcile with his usual self. PD4 also emphasised his concern with returning to his ‘‘old self’’: Because (- - -) I was a little anxious and wanted to get back try and get back to my old self again . . . Several of the participants described themselves as heavy drinkers prior to the stroke and spontaneously gave a lot of detail about that, and how they had changed since the stroke. As noted above, this had made a difference to at least four participants’ social contacts, hence significantly changing their social roles. When discussing hospital experiences immediately after the stroke, some issues important to Aboriginal identity were discussed. PA6 described the importance of knowing other Aboriginal people in the hospital and not feeling isolated. He would often go to meet other Aboriginal people in a ‘‘meeting area’’ just outside the hospital. However, frustrations were also reported. PA2, for example, related an incident where she found herself being showered by a male nurse. She said she felt ashamed and that this was not appropriate, but partly due to her speech difficulties, she was unable to tell anyone except her husband. PA6, while describing the importance of Aboriginal companionship as noted above, also recounted feeling suicidal after his stroke whilst in hospital, although others said they felt supported and ‘‘looked after’’ in the hospital. Co-morbidities The role of co-morbidities in all participants’ lives was prominent. For example, five of the seven participants with aphasia and all participants with dysarthria noted other significant conditions they were dealing with including diabetes, heart disease and kidney disease. Two other participants were experiencing significant family issues and one was being assisted with housing due to financial difficulties. The ongoing results of the stroke (such as aphasia and hemiparesis) appeared to be of less importance than the conditions seen as more immediately life-threatening, with only a few, as noted above, actually focusing on the stroke effects.

Discussion This study represents the first of its kind exploring the experiences of Aboriginal people with ACD after stroke. Our findings suggest that the Aboriginal people interviewed in this study had a ‘‘getting on with life’’ approach to their strokes, attempting to reintegrate into their communities as fully as possible and maintaining positive attitudes despite significant change in their lives. The fact that their communication difficulties did not feature much in their discussions may have reflected the time post-onset for some of them, the fact that they had a range of other health issues to deal with and perhaps a tendency to see life from a relatively holistic perspective, rather than considering separate impairments as the focus of attention. Communication with others as part of general socialisation appeared very important, and their difficulties did not appear to restrict many of them in this regard. Even PA3, with minimal speech, had engaged in many social and community activities and did not appear to dwell on her communication disorder. People wanted to be independent, but it was also obvious that many depended on family and friends to support them in their everyday living. Different from many

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studies of aphasia in the general population, however, the majority of participants with ACD were single, and several of the participants in this study lived alone. The findings demonstrate some overlap with what is already known about life post stroke with an accompanying communication disorder within the general population – related specifically to changes in employment, family relationships and levels of independence [1,2]. However, our analysis also revealed some issues that appeared somewhat different for participants in this study. The relatively young mean age at the time of stroke (38 years) and the presence of significant co-morbidities for most participants are consistent with what we might expect given the general health data for Aboriginal Australians cited above. Katzenellenbogen et al. [4] found that 60% of Aboriginal nonfatal stroke burden occurred in the 25–54 year age-group compared to 24% in the non-Aboriginal group. Stroke in this age group has obvious ramifications for employment as well as implications for parental roles. In non-Aboriginal studies of the aphasia experience, the notions of ‘‘moving on’’ and re-engaging with community have been emphasised; however, the communication disorder itself has typically been the focus of discussion, with participants often discussing social and psychological ramifications in detail. For Aboriginal people, both having to deal with significant and current life-threatening co-morbidities as well as the systematic stress, which is the daily experience of many Aboriginal people [26], may well contribute to the perspectives noted in this study where the ACD was not the main focus of discussion. In addition, while not raised in the current interviews, spiritual beliefs related to possible supernatural causes of the stroke itself may contribute to an attitude of acceptance or resignation [14]. For example, notions of illness as retribution form part of traditional belief systems, while people who have passed can also be seen to be looking after those living. It should also be noted, however, that the relatively long time post stroke onset of most participants may also have influenced their attitudes, hence these must be further explored at earlier stages post onset. While dependence on family members after stroke is common in the general population, much of the previous general research on the experiences of people with ACD has reported on people supported by a spouse in the community [27]. This study, accessing higher numbers of those living with siblings or children, may reflect differences in sources of support within extended Aboriginal families. The fact that none of the participants continued to receive speech pathology services following discharge from hospital suggests both a lack of accessibility and relevance of current services. It is also consistent with the study by Kilkenny et al. [13], who found that Aboriginal people were less likely to receive early allied health assessments than non-Aboriginal people whilst in hospital. It is well recognized that culturally appropriate assessments and treatment resources are scarce for this population and there is a need for further work to explore the degree to which speech pathology services meet the needs of AboriginalAustralians [28]. Further investigation of discharge/ follow-up processes and outcomes is also warranted. However, it is also possible that this finding reflects the theme of ‘‘getting on with life’’ and people wanting to be independent. Despite the relative absence of speech pathology for this group, other social, family or leisure-based communication opportunities featured highly, reflecting the ways in which people worked to achieve community reintegration despite their deficits and being outside the institutional health system. It may be helpful in this context for speech pathologists/rehabilitation professionals to further explore non-clinical environments in

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which to better integrate information/education/therapy support. Professionals may need to look to other less clinically-oriented services and venues, particularly those run by Aboriginal organisations, to provide ongoing supports. Community based rehabilitation models promoting collaborative partnerships between service providers and Aboriginal communities across a number of conditions have been proposed [29], and such models may well deserve greater exploration in the communication disorder context. The difference noted in the mention of speech therapy tasks, frustration and embarrassment and less social participation outside the family by the people with dysarthria may be explained through the more obvious nature of a motor speech disorder like dysarthria. Slurring of speech and change in voice quality associated with dysarthria are typically perceptible to the lay person, whereas aphasia can be a more ‘‘hidden’’ disorder. It is quite possible that both the person him/herself as well as family/ friends/health professionals may have preconceived notions as to what slurred speech might infer (e.g. intellectual disability, intoxication, etc.), which might have more obvious negative connotations and hence cause more negative reactions including embarrassment. Of key importance in this study is starting the process of hearing Aboriginal stories of living with ACD. While the numbers in this study are small and generalisations cannot be made, their stories will be useful in guiding future studies and ultimately rehabilitative services as well as in discovering the nature of Aboriginal discourses of disability, rehabilitation and resilience. While many similarities exist between Aboriginal people and non-Aboriginal people’s reactions to ACD after stroke, both health/social context and culturally based differences also exist that require consideration by clinicians working with this population. Hearing these stories and experiences provides an important base for more responsive and appropriate post-stroke care and rehabilitation services.

Acknowledgements We wish to thank the Speech Pathology Department of the Royal Perth Hospital, for their assistance in recruitment of participants for the study, and the Reference Group in providing guidance for the study. Finally and most importantly, we wish to thank the participants for sharing their stories and their homes with us in order to help others who have experienced strokes already or may in the future.

Declaration of interest The authors report no conflict of interest. The study was funded by the Australian Institute of Aboriginal and Torres Strait Islander Studies Grant G2010.7595.

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DOI: 10.3109/09638288.2014.972581

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