Introduction
Surviving a traumatic brain injury (TBI) can frequently entail many life changes due to resultant physical, cognitive and communication impairments. Changes related to social adjustment may not be immediately apparent but may continue to emerge over time (Olver, Ponsford & Curran, Reference Olver, Ponsford and Curran2009; Salas, Casassus, Rowlands, Pimm & Flanagan, Reference Salas, Casassus, Rowlands, Pimm and Flanagan2018), with personal and social circumstances like age, gender, incidence of depression and family support impacting on recovery, although to varying degrees (Alway, Gould, Johnston, McKenzie & Ponsford, Reference Alway, Gould, Johnston, McKenzie and Ponsford2016; Gauthier et al., Reference Gauthier, LeBlanc, Seresova, Laberge-Poirier, Correa, Alturki and de Guise2018; Lewis & Horn, Reference Lewis and Horn2017; O’Reilly, Wilson & Peters, Reference O’Reilly, Wilson and Peters2018). However, the overarching cultural context of the brain injury survivor, particularly that related to minority peoples with a history of colonisation and discrimination, has rarely been referred to in the research literature (see recent systematic review by Lakhani, Townsend and Bishara (Reference Lakhani, Townsend and Bishara2017)), despite profoundly influencing a person’s recovery journey in significant ways, including access to services. In an AboriginalFootnote 1 world view, for example, and consistent with Bronfenbrenner’s socioecological model (Reference Bronfenbrenner1979), the individual is embedded in the family and community in a collectivist context, so that the effects/experience of a brain injury have immediate relevance and ramifications for that person’s immediate and extended family, community and beyond, as well as for the person him/herself (see Fig. 1 – Coffin & Armstrong, Reference Coffin and Armstrong2018). Cultural concepts surrounding holistic views of health/illness, perceptions of the cause and effects of the injury, spiritual factors and family connections all contribute to the brain injury survivor’s experience and expectations of services. These factors interact with broader societal influences and institutions contributing to the person’s ultimate experience of and access to services. While ‘culture’ is included in the International Classification of Functioning, Disability and Health (ICF) (World Health Organisation, 2001) under ‘personal’ factors, its overarching influence on an individual’s experience, adjustment post-injury and access to services has rarely been explored and historical and social-societal contexts have not been taken into account usually.
The positioning of the Aboriginal brain injury survivor within a service, family/community and wider societal context. (Coffin & Armstrong, Reference Coffin and Armstrong2018).
A higher incidence of TBI in indigenousFootnote 2 populations compared to that in non-Indigenous populations, as well as difference in patient profiles, has been reported in Canada (Blackmer & Marshall, Reference Blackmer and Marshall1999; Rutland-Brown, Wallace, Faul & Langlois, Reference Rutland-Brown, Wallace, Faul and Langlois2005), the US (Linton, Reference Linton2015; Rutland-Brown et al., Reference Rutland-Brown, Wallace, Faul and Langlois2005), New Zealand (Feigin et al., Reference Feigin, Theadom, Barker-Collo, Starkey, McPherson, Kahan and Ameratunga2013) and Australia (Jamieson, Harrison & Berry, Reference Jamieson, Harrison and Berry2008; Katzenellenbogen et al., Reference Katzenellenbogen, Atkins, Thompson, Hersh, Coffin, Flicker and Armstrong2018). In the Australian context, epidemiological data from Western Australia (WA) (Katzenellenbogen et al., Reference Katzenellenbogen, Atkins, Thompson, Hersh, Coffin, Flicker and Armstrong2018) demonstrate differences between Aboriginal and non-Aboriginal TBI populations which have implications for service delivery. The study found there was higher likelihood of Aboriginal brain injury survivors living in non-metropolitan areas (82.5% vs. 51.5%). Katzenellenbogen et al. (Reference Katzenellenbogen, Atkins, Thompson, Hersh, Coffin, Flicker and Armstrong2018) reported that 56.4% of Aboriginal people in the study came from either remote or very remote areas as defined by the Accessibility/Remoteness Index of Australia-Plus (Australian Institute of Health and Welfare, 2004) as opposed to 10.6% of non-Aboriginal survivors. There was also a higher proportion of Aboriginal females (41.5% vs. 25.6%), a higher proportion of repeat injuries in Aboriginal survivors (23% vs. 7.4%), substantially higher assault-related TBI (57.4% vs. 19.6%) and higher levels of comorbidities. These figures are consistent with North American data (Blackmer & Marshall, Reference Blackmer and Marshall1999).
Reports indicate that Indigenous peoples are underrepresented in neurological rehabilitation services in general and receive minimal follow-up after hospital discharge (Armstrong, Hersh, Hayward & Fraser, Reference Armstrong, Hersh, Hayward and Fraser2015; Keightley et al., Reference Keightley, Kendall, Jang, Parker, Agnihotri, Colantonio and Bellavance2011). Reasons include lack of rehabilitation services in rural and remote areas, distances from where services are provided and miscommunication between Aboriginal patients and health service providers who are mostly non-Aboriginal. The Western biomedical model of health within health services can also result in a relatively inflexible approach to care which is often inconsistent with an Aboriginal holistic view of health and poor at accommodating holistic care for multiple comorbidities (Katzenellenbogen, Teng et al., Reference Katzenellenbogen, Teng, Lopez, Hung, Knuiman, Sanfilippo and Thompson2015).
To date, a DVD resource (Queensland Government, 2017) provides the only documented stories of Aboriginal Australians with TBI, although a study is underway in North Queensland (Bohanna et al., Reference Bohanna, Fitts, Bird, Fleming, Gilroy, Esterman and Clough2018) examining the journey in the first 6 months post-injury and the transition processes between hospital and community. Few ‘intervention’ or treatment studies in this area are available, although the studies which have been undertaken suggest that involvement of extended family/elders and a community focus are central (Elder, Reference Elder2013; Foster et al., Reference Foster, Armstrong, Buckley, Sherry, Young, Foliaki and McPherson2012; Gauld, Smith & Kendall et al., Reference Gauld, Smith and Kendall2011). A common theme emerging from these studies and from our previous work (Armstrong et al., Reference Armstrong, Hersh, Hayward and Fraser2015) also suggests that there is strong Aboriginal/Indigenous community concern to improve identification and education about prevention of brain injury, as well as for support for brain injury survivors and their families. In order to acknowledge this concern and the concern of the wider rehabilitation service provider community, more information is needed on the effects of TBI within the Indigenous context.
The current paper relates the individual stories of five Aboriginal Australian men with TBI, encompassing cultural, psychological, geographical and service contexts, and attempts to describe how these factors interacted to shape their recovery journey. This information complements the epidemiological data cited above available as well as another paper (in preparation) by our team focused on Aboriginal women’s experiences. In presenting these case studies, we aim to (i) highlight issues faced by Australian Aboriginal male brain injury survivors and (ii) highlight the real-life consequences of the high incidence of TBI and inadequacy of treatment for this population. Implications for service planning in the Australian context are also likely to be useful in an international Indigenous context.
Method
Design
The work presented here utilised case study methodology (Baxter & Jack, Reference Baxter and Jack2008; Creswell, Reference Creswell2007). This approach emphasises the importance of understanding the phenomenon in context using a range of data sources. Case studies of individuals, or groups of individuals, are often written up as stories, with the opportunity not only to gain a chronological narrative flavour, but also to analyse contrastively both with each other and against other published cases. Information gained from the larger Missing Voices project was used to help support the more detailed exploration of the cases reported here. The Missing Voices project was a large, mixed methods study based across one metropolitan and five regional areas, which aimed to document the extent and impact of acquired communication disorders (ACDs) associated with TBI and stroke in Aboriginal Australians living in WA. For the full study protocol, including the Aboriginal Research Framework, see Armstrong et al. (Reference Armstrong, Hersh, Katzenellenbogen, Coffin, Thompson, Ciccone and McAllister2015).
The data
Two substudies within Missing Voices provided the data contributing to the case studies developed for the current paper. First, a retrospective medical file review was conducted of stroke and TBI admissions in nine hospitals across WA (five regional, one tertiary and three subacute). Sixteen patients with TBI with confirmed accompanying communication disorders were identified, of which 12 were men. These files provided details of injuries, and services provided. Second, semi-structured interviews with nine Aboriginal adults with TBI were undertaken. Six of the nine participants with TBI were men. The two substudies were conducted independently of each other, hence not all individuals who had participated in interviews had complementary file review data available, and not all individuals contained in the file review had participated in interviews, although some had both sets of data. A subset of male TBI patients was purposively selected from these sources as case studies. Ideally, we sought people for whom data were obtained from both the medical files and interviews. However, few such participants were available. Instead, we employed a purposive sampling approach and focused on participant stories that demonstrated variety in terms of experiences and outcomes, and diversity in terms of demographic and social/cultural contexts. The interview data obviously provided the person’s perspective on the TBI experience, whereas the file data provided a more factual account. While the different nature of such data is acknowledged, it was felt that stories emerging from both sources were best included as they represented the widest range of experiences encountered. The selected patients varied in relation to their age, language group, type of ACD and living circumstances. We included the stories of three participants who completed interviews (two complemented with their file review data), and two participants whose stories were extracted from the retrospective hospital file reviews alone (i.e., no interview data were available on these two participants). See Table 1 for details regarding particular participants and matching data sources.
Demographic, clinical and contextual information for the cases
Note. *CCD = Cognitive Communication Disorder
The interviews were completed in the participants’ homes. The interviewers were Aboriginal Australians who were provided with training as part of the project, working with one of the speech pathology (SP) researchers when expertise was required to support any participant who had a severe communication disorder. Interviews were either videotaped or audio recorded, and then transcribed verbatim. Participants were asked about their initial experience of the TBI, therapy, family reactions, and longer-term experiences and reflections on services and assistance received.
The file review involved a retrospective exploratory review of hospital medical files completed in four metropolitan and five regional hospitals for Aboriginal people from 2002 to 2016 who had a documented ACD following stroke or TBI. The data captured demographic details, details of any transfers from regional/rural to metropolitan hospitals for treatment, rehabilitation treatments undertaken and discharge destination, as well as additional notes that were taken from assessment and discharge reports (Armstrong et al., Reference Armstrong, Hersh, Katzenellenbogen, Coffin, Thompson, Ciccone and McAllister2015).
Data analysis
For the larger Missing Voices project, as agreed by the Aboriginal and non-Aboriginal research team, the interviews were analysed initially by two non-Aboriginal speech pathologist research team members with expertise in ACD for common themes (Sandelowski, Reference Sandelowski2000; Taylor & Bogdan, Reference Taylor, Bogdan, Hayden and Avery1994). This involved reading closely, initial open coding by highlighting recurring and important ideas raised in the transcripts, and then merging these codes into higher-order themes. These were then discussed, along with transcripts and videos, with the rest of the Aboriginal and non-Aboriginal team members for further analysis and theme verification. This was to ensure that interpretations were accurate and that thematic categories were culturally appropriate and reflected speakers’ intentions as shown in the transcripts and video recordings. For the purposes of the current study, the themes developed from examination across all the interview transcripts were complemented by a more detailed consideration of individual cases. The cases were then re-examined by the team in order to obtain more specific features of the individuals’ stories while keeping the previously identified, overall themes in mind.
Where file review data alone were available, the data were collated and formed into a narrative, with two team members agreeing on accurate representation of the file details. Where both interview and file data were available, information was collapsed and again narratives constructed, with agreement between two team members. File data in this circumstance complemented interview data mostly in terms of factual information, especially where participants were more severely, communicatively or cognitively impaired.
The resulting five case reports are presented here as stories, or narratives, in order to give them a sense of ‘a meaningful whole, and of connecting and seeing the consequences of actions and events over time’ (Chase, Reference Chase and Lincoln2005). This approach exemplifies the broader findings and provides a personal perspective of the experience post-injury within the participants’ cultural, social and geographical context prior to the TBI, and after the TBI (both acutely in some cases and longer term in all). Both individual and common overall themes across cases were then noted, with a focus on description, pattern matching and explanation building (Baxter & Jack, Reference Baxter and Jack2008; Creswell, Reference Creswell2007), using the same team discussion and verification process described above.
Participants are referred to by pseudonyms, and language groups are omitted to maintain confidentiality.
Ethics approval and consent
Ethics approval for obtaining data as part of the Missing Voices project was granted by the Western Australian Aboriginal Health Ethics Committee, the Human Research Ethics Committees of Edith Cowan University, the University of Western Australia, the Western Australian Department of Health, the Southern Metropolitan Health Service, the Western Australian Country Health Service Research Ethics Committee, and the Kimberley Aboriginal Health Planning Forum Kimberley Research Sub-Committee. In addition, four Boards of Aboriginal community-controlled health organisations provided approval, as well as one Western Australian Country Health Service-controlled Aboriginal health centre.
Case Reports
The five cases reported here were individuals who were at least 3 months post their TBI and had a diagnosed ACD. Demographic, clinical and contextual information for each of the five cases is outlined in Table 1. It should be noted that less contextual information was available on the individuals whose information was obtained through file review only.
Martin
Martin is a 61-year-old man who had a motor vehicle accident 20 years prior to his interview, resulting in severe physical disability and severe aphasia/apraxia. He was left fully dependent on others for all activities of daily living and now lives in a group home with other Aboriginal and non-Aboriginal people with disabilities in a regional town. Martin had children and was working as a station hand at the time of his car accident in remote WA. He used to play the guitar and was a talented sportsman. His first language was a local Aboriginal language but he reportedly also spoke English prior to his brain injury. He was transferred to an acute hospital in Perth immediately after the accident and then transferred to live in an aged care facility in Perth. Two years later, Martin was assisted to move to an aged care facility 700 km from Perth but still hundreds of kilometres from his remote home community. He lived there for 10 years. During the intervening years, Martin lost contact with many people in his extended family, some of whom reportedly thought he had died.
Though it was not used (as it was not charged) or discussed much during the interview, Martin had an augmentative and alternative communication (AAC) device with voice output to assist with his communication. This device had apparently been provided by a visiting Speech Pathologist but did not appear to be used by Martin or his carers. A carer, Jenny, pointed out ‘it would be good if it talked [Martin’s Aboriginal language]’.
From time to time, visits to residents’ homes are organised, which can require days and nights away from the group home and carers taking on enhanced roles. Martin was supported by two male carers (who provided his personal cares and transport) to visit his home community for the first time in 17 years to attend the funeral of a relative. While this was a sad event for Martin, Jenny described the cultural importance of him being there as the eldest male in the family. When asked how she knew that Martin wanted to return, Jenny replied by addressing Martin directly: ‘You told me by when we would talk about your family, and when we would talk about your land that you were happy. When you would talk about it, I knew you wanted to go home. You didn’t tell me in words. You told me in other ways’
Jenny said that when the residents from the same language group and visitors get together with Martin, the impact on him is striking: ‘It makes a difference. I mean it’s good to sit around and we get the fire pit going and the staff and everyone gets on really well and we have some really good nights and everyone talks and laughs a lot… when there’s language spoken…it’s different’. Jenny noted that perhaps in the past, English-speaking staff have belittled or been unaware of Martin’s abilities, misunderstanding his language difference as ‘jibberish’. Jenny described the ‘mismatch’ as ‘losing your voice in a different way’. Though Martin was described as being ‘very accepting’ of his ACD, Jenny acted as an advocate for Martin and spoke positively of Martin’s abilities rather than his inabilities: ‘We were told that Martin didn’t speak… well, he certainly does speak. In fact, he likes to sing. Sometimes at night when he likes to sing, he’s very into his hymns that he likes’.
Jenny spoke of the services she has advocated that Martin receive including dental services (requiring a trip to Perth) and also explained that misinformation about Martin’s abilities and presentation directly affected the care and services he received. For example, an extract from his case notes stated ‘Some of the things that came through his file, like for instance he had no teeth… but when we came and actually had a look, what he had was a mouth full of teeth like rotten to his gum line’. Jenny stated that Martin received hospital-based allied health services in Perth; however, the details of this were not present in his medical file.
Martin acknowledged in the interview that he would like more SP services. However, as the local allied health team in his regional town does not usually provide services to people living in residential care it was unlikely that Martin would receive these in the near future. Martin has been mostly dependent on an ad hoc visiting service from Perth to provide specialist intervention for his muscle contractures and to implement an alternative communication system. This means that he only receives physiotherapy (PT) or SP services during inpatient stays at the local hospital for acute illnesses (often related to chronic disease or health issues related to his TBI) and at those times, the input is very limited. Much of the coordination for Martin’s primary health care falls to carers. For many years, it also appeared that Martin was without an advocate to champion for regular communication with his family and community and to request regular intervention by allied health professionals and specialist doctors. His carers had taken on fulfilling this role. Martin agreed that he was much happier living in the group home than in the aged care facility, and that his carers made the difference.
Steve
Steve is a 51-year-old man who had a brain injury following a fall (reported by his wife as being associated with a fight) which had occurred 3 years earlier and resulted in left-sided neglect, left hemianopia, left hemiparesis and dysarthria. Steve’s medical notes indicated that he had a subdural haematoma 20 years earlier for which he needed neurosurgery, as well as renal problems and hepatitis C. Steve lives in a regional centre in the north of WA and speaks the local Aboriginal language as his first language. His family do not speak this language, so he typically speaks Aboriginal English. Steve describes himself as ‘quiet all the time… I don’t like having a yarn with anybody…’, even before his accident.
Following his fall, Steve reported that he ‘couldn’t talk properly’ and that his left arm was paralysed. Steve reported that his wife and stepdaughter had come and stayed in a hostel near the metropolitan rehabilitation hospital. He thought he had seen a physiotherapist and speech pathologist but was not sure, although he recalled receiving more therapy in the city hospital than when he returned to his home town. He also reported being ‘homesick’, and wanting to ‘run away from there, jump in the car and come home…’ While Steve had previously been allowed to go outside or visit with his family in the hostel, after reporting his desire to run away ‘they didn’t trust no more. They took me back inside and that’s the end of it’. Steve reported being determined to get better and to be strong, even though he was homesick.
On discharge from the rehabilitation hospital, Steve was readmitted to the regional health campus for almost a month. His medical notes indicate multidisciplinary input including PT, occupational therapy (OT), social work and SP. The medical notes indicate that a communication assessment diagnosed him as having mild dysarthria, mild dysphonia and cognitive communication disorder, and recommended monitoring of swallowing. He only received one SP session focused on techniques to manage his dysarthria and dysphonia, although a regime of SP for 3 days per week was recommended. The circumstances around his discharge from SP are uncertain, with no documented follow-up on discharge to respite care in an aged care facility. Steve did not recall having SP, although he commented that ‘I was talking funny…couldn’t get the words out properly’. His medical notes indicate that he continued to see OT and PT after his transfer to respite care while home modifications were completed. At interview, he expressed interest in further PT to learn to walk again.
Steve returned home after his time in respite care and was supported by a community care provider as part of the home and community care (HACC) program. Steve also attended a day centre run by HACC several times per week. He reported that he enjoys this because he can ‘get away from there, from the grandkids’.
Douglas
Douglas is a 41-year-old man who suffered a TBI as a result of a motor bike accident while visiting Perth from his home in remote WA 10 years earlier. At the time, he had been working as a labourer. After the accident, he remained in Perth for inpatient rehabilitation for several months where he reported being frustrated by his communication problems in particular, but being satisfied with his overall treatment.
Eleven years on, he is living alone, back in the remote community. He has a residual left-sided hemiparesis and reported that his main issues were his inability to return to employment, his anger outbursts and his social isolation. During his interview, he reflected on how his life had changed in terms of independence, employment and personality/identity:
My whole world has changed because of the head injury, accident, to where I am at the moment. Life was a bit easier for me living before that happened. I could do so much for myself. I could work, get a good understanding and talk nicely without getting angry. I was a happy-go-lucky person, not show any signs of anger much at all.
Douglas’s niece and a small number of family members in his home community ‘keep an eye’ on him. He is somewhat dependent on his family in that he does not drive but does manage everyday activities. His family are concerned that he is not able to manage his finances very well and they observed that he now smokes and gambles excessively. His communication skills remain impaired and consequently he prefers to only mix with family members. He does not leave his community very often as he deliberately tries to avoid people and situations that might trigger his ‘short fuse’ which developed since the accident. He is acutely aware that people think of him as an ‘angry person’ and this causes him great sadness and concern.
I get angry at everything all the time. When I don’t catch on to what they’re actually saying and I get angry. I would like to be judged as a nice person, not a horrible angry person.
Douglas repeatedly referred to recovery as being up to himself from the outset, the loneliness he felt in hospital and his motivation for recovery being rooted primarily in the family:
I had to do it myself. Because I knew basically the only one who could help me to get out of the hospital …which I wasn’t happy with because I felt like I was in lockup and I felt so alone, and I cried for visitors. And I knew if I could get myself out of there, um, I could visit the people I love and care about. And that’s it. And I knew the only one who could get me out there was myself. I’ve got to row the boat on my own, more or less.
He reports that the only service supports he currently receives relate to doctors’ appointments to renew prescriptions.
Max
The case notes for this participant were brief but reflected an important story of a man whose problems were mostly resolved but who was left with residual and subtle difficulties. This scenario is not an uncommon story in the TBI literature, hence including an Aboriginal patient with this profile was important in order to provide an Aboriginal context. The lack of follow-up is an important component of the story.
Max is a 48-year-old man from a regional town many kilometres from Perth who suffered a TBI as a result of an assault. He was taken immediately to a Perth metropolitan hospital by the Royal Flying Doctor Service where he was in a coma for 1 week and had post-traumatic amnesia for a month. He was then transferred to a Perth rehabilitation centre where he was ‘initially disoriented and confused, with a mild–moderate aphasia but recovered rapidly’ (from hospital discharge report). He was discharged back to the regional centre with a mild word-finding difficulty and spelling problems. He was described as very motivated during his time in the metropolitan hospital with excellent family support; on discharge his family was more concerned about his symptoms than he was. His father said Max’s communication had ‘changed’ – his facial expression had changed and he tended to butt into conversations, unlike his quietly spoken manner before the injury. On return home, he attended two outpatient appointments but, thereafter, allied health staff at the local hospital reported that they could not contact him directly or via services to which he had been referred. There was no indication in the files as to what attempts had been made.
David
David is a 21-year-old man who suffered a catastrophic brain injury and multiple orthopaedic injuries at age 19 when he was an unrestrained passenger in a car involved in a high-speed vehicle rollover in remote WA. At the time, he was working on a mine site and according to his family, was living a ‘good life’ before the accident. He was living with a cousin in a remote town to be closer to his work. His family was spread around other remote towns in WA. He spoke a local language as his primary language. After the accident, he was transferred to Perth for intensive care. He remained an inpatient in the Perth hospital for approximately 13 months and in that time received ongoing medical, surgical and allied health care to manage the profound physical and sensory impairments acquired in the accident. He also had severe dysphagia requiring percutaneous endoscopic gastrostomy feeding, was bed-bound and fully dependent for transfers due to a low score on the Glasgow Coma Scale (GCS) and increased muscle tone, had a tracheostomy (removed 3 months after injury) and no intentional communication ability. His GCS did not significantly improve over those months.
David’s parents moved to various addresses in Perth – hundreds of kilometres from their home – to be closer to him, leaving jobs and other commitments behind. Guardianship orders were put in place as it was determined that he was unable to make decisions or express his requests. He remained unable to follow simple instructions or to vocalise 13 months after his accident. A claim was made to the Insurance Commission to cover facility costs secondary to his total disability. He remained an inpatient as there were no available beds in the appropriate residential care facilities in Perth for young people with acquired disabilities. No such services exist closer to the young man’s home community. At the age of 20, he was transferred to an aged care facility to await a bed in the other service. He and his family remain in Perth and functionally, at the time of the file review, his condition remained unchanged.
Thematic analysis of the cases is depicted in Table 2. The common themes revolved around (i) the significant life changes resulting from the TBI, including severe physical, cognitive and communication difficulties and related identity/role change, (ii) the impact of long-term deficits, (iii) dislocation from country and family after transfer from rural and remote areas to the city for treatment, dislocation at times for families accompanying the brain injury survivor, either in the short or long term and (iv) the general lack of support from formal health service providers in the longer term. For one person in particular, language was an issue in isolating this man for many years from anyone who spoke his first language. This was associated with confusion where the service providers were lacking cultural awareness about language diversity and language disorder associated with brain injury, but ultimately was also a key in prompting socialisation opportunities many years later. Other individual themes or themes common to more than one person, but not all, included issues related to long-term care facilities mostly catering for elderly people, when the individuals reported on were aged 19 and 42 years (at the time of their injury), respectively, motivation for recovery being mostly related to family and poor communication between services. These themes are elaborated upon in the discussion below.
Themes for each participant
Discussion
These case reports represent some of the first documented stories of Aboriginal Australian survivors of TBI. They supplement currently available epidemiological data and highlight different contexts for Aboriginal people after TBI, contributing to an overall profile that is relevant to service planning.
The cases reflect the diversity of Aboriginal patients with TBI, particularly those living remotely, and show multiple reasons why the under-representation of Aboriginal people in rehabilitation services occurs. The profile of experiences has commonalities with TBI in other population groups but also highlights the need for approaches to accommodate this potentially distinctive population of brain injury survivors. The context of cultural, linguistic and historical factors within the lives of Aboriginal brain injury survivors and their families, adequacy of current service delivery models, existing biomedical models of health care, and the more remote place of origin and thus family support of these patients all need to be considered. The adequacy and accessibility of services for therapy and support need to be challenged given the pattern of care needs, the lack of understanding and accommodation of basic issues involved such as language, family context and significance of proximity to country.
Significant life change
Four of the stories reveal significant life changes following severe TBI as is typically reported (Alway et al., Reference Alway, Gould, Johnston, McKenzie and Ponsford2016; Ponsford et al., Reference Ponsford, Downing, Olver, Ponsford, Acher, Carty and Spitz2014). For these individuals, the cognition-related behavioural and communication changes affected their everyday life in ways that are as disruptive as physical changes given their impact on social relationships. The remaining case (Max) also reflects potentially significant issues related to cognitive impairment but at the milder end of the scale. The communication disruptions encountered for the people described clearly impact the spoken medium which is central to Aboriginal culture, in which cultural roles are enacted, and abilities to share and recall songs/stories are vital. Feelings of self-worth, identity and inclusion in community life in pre-TBI roles are also major factors to consider in this context.
Long-term deficits
The long-term nature of the deficits involved reflects general TBI features (McDonald, Togher, & Code, Reference McDonald, Togher and Code2014). The frequent loss of contact with rehabilitation providers after discharge from hospital appears to be common regardless of whether the person was discharged to another facility or home. Families need to be made aware of information available about caring for a TBI survivor in the longer term (including general online resources such as TBI Express (Togher, McDonald, Tate, Rietdijk & Power, Reference Togher, McDonald, Tate, Rietdijk and Power2016)). Loss of contact is particularly problematic for those with severe injury discharged to a care facility where opportunities for both staff cultural training and communication training specific to those with severe communication impairment are limited. The long-term nature of TBI sequelae also has potentially greater impact on the rural environment where rehabilitation services and resources are scarce (Kelly, Dwyer, Willis & Pekarsky, Reference Kelly, Dwyer, Willis and Pekarsky2014).
Dislocation: rural and metropolitan hospital transfer context
The participants’ rural backgrounds and transfers to metropolitan hospitals following the brain injury reflect the dominance of metropolitan-based services for TBI-related rehabilitation in WA. The stories highlight the complex issues and extent of dislocation involved which have been noted previously for a variety of conditions (Kelly et al., Reference Kelly, Dwyer, Pekarsky, Mackean, Willis, Battersby and Glover2012). Dislocation from country and family is a central issue to consider within the journeys of many Aboriginal brain injury survivors. Telemedicine is being increasingly implemented in order to overcome distances between the brain injury survivor and family/community following injury. Although challenges persist in implementation (Hines et al., Reference Hines, Brunner, Poon, Lam, Tran, Yu and Power2017), this demonstrates enormous potential if combined with a culturally secure delivery.
Family and living situations
Long-term changes in living circumstances included residency in aged care or group homes, living alone following relationship breakdown or living with family in a more dependent way. These changes impeded choices the individuals were able to make and speak to the significance of the injury and its consequences. Residential care always carries with it a dislocation from one’s home and living circumstances. When patients are placed in care vast distances from their home, the effects are compounded. For Aboriginal people, such an environment is potentially incongruent with the aspects of life which provide psychosocial support and motivation for recovery. For most Aboriginal people, this includes separation from family, from language, from country, from people with a similar life story and from roles in life that would usually provide activity and participation meaningful to them and their worldview.
Lack of follow-up/ongoing support
The lack of ongoing support for many of the cases reported appeared to result from poor information – lack of communication, lack of documentation and from inadequate efforts by the systems caring for them. This is because of lack of services in rural and remote areas and lack of advocacy, and results in poor continuity of services. The majority of Aboriginal TBI survivors are from rural and remote areas, and support services in this context are clearly lacking. While services are limited for all brain injury survivors in these areas, the proportion and numbers of Aboriginal people living in rural/remote areas are much higher. Additionally, a disconnect is noted between both the mostly non-Aboriginal health workforce and the Aboriginal communities, and the non-Aboriginal and Aboriginal health services (specifically in the case of brain injury, for which services are not typically available through Aboriginal Community-Controlled Health Organisations). Further cultural security training and improved awareness of brain injury and its consequences within broader health service providers will assist this situation. In addition, TBI survivors and their families may also benefit from support organisations, access to online education and support information (Togher et al., Reference Togher, McDonald, Tate, Rietdijk and Power2016), and telemedicine options, for accessing advice and support remotely, as well as being supported at the local level.
Early contact with Aboriginal Hospital Liaison Officers should also assist the person and their family during the acute stages after injury and engender a sense of cultural security, which may then extend to community nurses, community Aboriginal Health Workers or local primary care service providers (Katzenellenbogen, Miller, Somerford, Mcevoy & Bessarab, Reference Katzenellenbogen, Miller, Somerford, Mcevoy and Bessarab2015; McKenna, Fernbacher, Furness & Hannon, Reference McKenna, Fernbacher, Furness and Hannon2015).
Language
For individuals reported here, it was not uncommon for languages other than English to be spoken. The case of Martin, whose primary language was not English, highlighted the importance of being able to use one’s primary language. It highlighted the importance of people being able to live in an environment in which the significance of language and culture is recognised and connection with others is actively supported. His case also demonstrates that non-Aboriginal health workers can misdiagnose the use of a second language as a language or cognitive impairment due to their lack of knowledge or understanding of such issues.
Implications for facilitating services
The issues raised in this study provide several ways forward in terms of possible recommendations for improving the types of journeys reported above. These are outlined in Table 3.
Recommendations for future services
Study Limitations
The lack of both interview and file data across all participants is a limitation of the study. Ideally, data should be consistent across participants. However, in a wide-reaching study such as this one, it is often difficult to ensure full access to both kinds of data on a consistent basis. For example, when obtaining interviews, access to detailed medical histories is not always guaranteed. Medical files may be spread across hospitals, hence ethical approval for access is not always simple. Similarly, stories obtained through file reviews often outweigh the number of available participants to be interviewed. File reviews may capture people who live across a wide area, people who have passed away or have moved residences. As noted above, the choice to utilise stories from different data sources was motivated by a desire to best represent the range of experiences encountered. The data presented need to be understood within its context and while it is not fully comprehensive, its unique nature ensures that authentic stories of Aboriginal people with TBI are conveyed for the first time.
Conclusion
The study highlights the experiences of Aboriginal TBI survivors after their brain injury, particularly those with ongoing, complex cognitive and communication difficulties. It identifies resultant issues impacting on everyday living and family/community relationships, and limited services being offered in rural/remote contexts in which they most commonly occur. It describes major identity changes for survivors within a culture that is centred on oral communication as a means to fulfill family and community roles, and continue the conveying of cultural history and values. While similar impairments are experienced by non-Aboriginal TBI survivors, these particular contexts need to be recognised and related issues need to be addressed when planning services for Aboriginal TBI survivors. The small number of stories presented in this paper is merely a snapshot of the contexts surrounding Aboriginal TBI survivors. More research is needed to further explore these and other contexts in more depth in order to provide culturally relevant and accessible services for Aboriginal TBI survivors and their families.
Author ORCIDs
Elizabeth Armstrong, 0000-0003-4469-1117
Acknowledgements
The authors would also like to thank the project participants who gave generously of their time to share their stories of recovery from, and living with brain injury.
Financial support
The study was funded by National Health and Medical Research Council Project Grant #1046228.
Conflicts of interest
Elizabeth Armstrong has no conflicts of interest to disclose.
Juli Coffin has no conflicts of interest to disclose.
Natalie Ciccone has no conflicts of interest to disclose.
Meaghan McAllister has no conflicts of interest to disclose.
Deborah Hersh has no conflicts of interest to disclose.
Sandra Thompson has no conflicts of interest to disclose.
Judith Katzenellenbogen has no conflicts of interest to disclose.
Natasha Cross has no conflicts of interest to disclose.
Linda Arabi has no conflicts of interest to disclose.
Leon Flicker has no conflicts of interest to disclose.
Deborah Woods has no conflicts of interest to disclose.
Colleen Hayward has no conflicts of interest to disclose.
Ethical standards
The authors assert that all procedures contributing to this work comply with the ethical standards of the relevant national and institutional committees on human experimentation and with the Helsinki Declaration of 1975, as revised in 2008.
