Introduction
Traumatic brain injury (TBI) is a major cause of death and disability worldwide (Hyder, Wunderlich, Puvanachandra, Gururaj & Kobusingye, Reference Hyder, Wunderlich, Puvanachandra, Gururaj and Kobusingye2007). Numerous epidemiological studies in the trauma and TBI literature indicate Indigenous people globally experience a higher incidence and prevalence of TBI compared to their non-Indigenous counterparts (Coronado et al., Reference Coronado, Xu, Basavaraju, McGuire, Wald, Faul and Hemphill2011; Feigin et al., Reference Feigin, Theadom, Barker-Collo, Starkey, McPherson, Kahan and Group2013; Jamieson, Harrison & Berry, Reference Jamieson, Harrison and Berry2008; Rutland-Brown, Wallace, Faul & Langlois, Reference Rutland-Brown, Wallace, Faul and Langlois2005). In the general Australian population, TBI is most commonly caused by accidental falls and traffic accidents (Harrison, Henley & Helps, Reference Harrison, Henley and Helps2008), with assaults also contributing (Jamieson et al., Reference Jamieson, Harrison and Berry2008).
Australian studies indicate that assault plays a more prominent role in TBI rates for Indigenous Australians. A Western Australian study of person-linked hospital and mortality data (2002–2011) has found assault to be the mechanism of injury in over half (57%) of Indigenous Australian TBI hospital admissions (Katzenellenbogen et al., Reference Katzenellenbogen, Atkins, Thompson, Hersh, Coffin, Flicker and Armstrong2018); in contrast, only one in five (20%) non-Indigenous patient admissions were due to assault (Katzenellenbogen et al., Reference Katzenellenbogen, Atkins, Thompson, Hersh, Coffin, Flicker and Armstrong2018). Indigenous Australian women contributed to over 40% of these TBI admissions, double the proportion of their non-Indigenous counterparts (20.7%) (Katzenellenbogen et al., Reference Katzenellenbogen, Atkins, Thompson, Hersh, Coffin, Flicker and Armstrong2018). These data reinforce findings from an earlier study which found that the rate of head injury-related hospitalisation for Indigenous people was 21 times higher than their non-Indigenous counterparts, and head injury due to assault for Indigenous women was 69 times the rate for non-Indigenous women (Jamieson et al., Reference Jamieson, Harrison and Berry2008).
Indigenous Australians admitted for TBI are also more likely to live remotely and have comorbidities such as chronic disease, mental health issues and substance misuse (Katzenellenbogen et al., Reference Katzenellenbogen, Atkins, Thompson, Hersh, Coffin, Flicker and Armstrong2018). Alcohol is also more likely to be involved at the time of injury for Indigenous people in Australia and Canada (Blackmer & Marshall, Reference Blackmer and Marshall1999; Jayaraj et al., Reference Jayaraj, Thomas, Thompson, Griffin, Mayo, Whitty and Nagel2012). The high rates of TBI coupled with the prominent roles of assault and alcohol makes it imperative to understand the experiences of Indigenous Australians post-discharge from hospital to ensure this group is adequately supported during recovery. Our research is also timely with the significant disability policy reforms that have been introduced at both a federal and state/territory level in Australia over the last decade, including the National Disability Insurance Scheme (NDIS) (Australian Government Productivity Commission, 2011).
From Hospital to Home: The Transition Period
TBI is an exceptionally personal experience involving the rebuilding and restructuring of an individual’s life. The early phase involving discharge and returning home from hospital, referred to as the transition period, is a significant adjustment (Turner, Fleming, Ownsworth & Cornwell, Reference Turner, Fleming, Ownsworth and Cornwell2008). Understanding the transition period is critical, as acute hospital and home care are adjoined (Nalder, Fleming, Cornwell, Foster et al., Reference Nalder, Fleming, Cornwell, Foster, Ownsworth, Shields and Haines2012) and where the responsibility for care shifts from the hospital system to family and caregivers (Nalder, Fleming, Cornwell & Foster, Reference Nalder, Fleming, Cornwell and Foster2012). A meta-synthesis of qualitative research (1956–2009) exploring the lived experience of over 250 people after TBI (Levack, Kayes & Fadyl, Reference Levack, Kayes and Fadyl2010) reported loss and disconnection across a number of areas of life, including loss of: physical and cognitive function, life roles and routines, social and family relationships, sense of self and hope for the future (Levack et al., Reference Levack, Kayes and Fadyl2010).
However, none of the studies reviewed principally sought to investigate the transitional experiences of Indigenous Australians. A recent comprehensive systematic review of research focusing on TBI among Indigenous people generally found that almost half the studies were focused not on transition but on prevalence or incidence rate only (Lakhani, Townsend & Bishara, Reference Lakhani, Townsend and Bishara2017). In health care generally, research indicates that Indigenous Australians experience differences in the health care they receive in hospital (Australian Health Ministers’ Advisory Council, 2012; Paradies, Harris & Anderson, Reference Paradies, Harris and Anderson2008). Compared with other Australians with the same medical needs, Indigenous patients complete less procedures and specialist treatment. Cross-cultural misunderstandings among clinicians are believed to unfavourably impact treatment access for Indigenous patients in hospital (Durey, Thompson & Wood, Reference Durey, Thompson and Wood2012). With TBI being a lead cause of disability, the lack of research leaves Indigenous Australians at risk of being underserved and without appropriate services to address their needs in recovery.
Study aim and objectives
The aims of the study were to: (i) identify the experiences of Indigenous Australians during the first 6 months after discharge from hospital; (ii) identify the help and supports Indigenous people accessed or used during transition and (iii) understand the gaps in service provision and/or difficulties Indigenous people experienced during this period.
Methods
Design
This study forms part of a larger project to explore the key transition outcomes for Indigenous Australians following TBI (Bohanna et al., Reference Bohanna, Fitts, Bird, Fleming, Gilroy, Maruff and Clough2018). Cognitive, mental health and wellbeing information from participants was collected at three time points: prior to discharge from hospital, 3 and 6 months post-discharge. At the 6-month time point (time point 3), qualitative interviews were also conducted. This paper is based on the qualitative interviews with participants at the 6-month point following discharge from hospital after TBI only. A qualitative approach was best matched to the study objectives as it enabled the research to explore and create meaning from the narratives of the participants and their lived experiences.
This study and the larger project were underpinned by the Indigenous Standpoint Theory to ensure the research is planned, owned and controlled by Indigenous people and that Indigenous are intimately involved in all aspects of the research (Gilroy, Donelly, Colmar & Parmenter, Reference Gilroy, Donelly, Colmar and Parmenter2013). The Indigenous Standpoint Theory has evolved through various Indigenous scholars, including Nakata (Reference Nakata2004), Tuhiwai-Smith (Reference Tuhiwai-Smith1999), Moreton-Robinson (Reference Moreton-Robinson and Moreton-Robinson2004) and Martin (Reference Martin2008). It is a decolonising approach that enables Indigenous people to maintain/regain or learn their own epistemological standpoint that has been lost due to colonisation and to adopt ethnocentric Western forms or approaches to knowledge (Foley, Reference Foley2006). It advocates for repealing the traditional Western academic praxis and privileging Indigenous voices in research planning and practice (Martin, Reference Martin2008; Nakata, Reference Nakata2004).
Research methods grounded in Indigenous Standpoint Theory build the capacity of Aboriginal and Torres Strait Islander people through engaging with them both directly during the research and during research translation (Gilroy et al., Reference Gilroy, Donelly, Colmar and Parmenter2013). Aboriginal and Torres Strait Islander Australians were involved in the study design, data collection processes, training of research staff and development of resources for participant engagement and consent processes. Key Indigenous Australians with Indigenous disability research and advocacy experience, community-based service provision, research translation and policy development expertise have agreed to be part of a reference group for the study. The reference group provided guidance on community engagement strategies, data collection and interpretation and research translation. All research team members completed an Indigenous Research Protocols workshop and training in Indigenous Research Methodologies, delivered by Aboriginal researcher (JG). As described elsewhere (Bohanna et al., Reference Bohanna, Fitts, Bird, Fleming, Gilroy, Clough and Potter2019), one participant from the project created artwork and accompanying storylines about his transition experiences from hospital to home after TBI. With the participant’s permission, the artwork and storylines were developed into posters for use by the research team to explain the project to other prospective patients interested in participating in the project.
Setting
The research team recruited Indigenous patients from three major trauma hospitals in northern Australia. As described elsewhere (Bohanna et al., Reference Bohanna, Fitts, Bird, Fleming, Gilroy, Maruff and Clough2018), the National Critical Care and Trauma Response Centre is a trauma service at the Royal Darwin Hospital that offers services primarily to individuals from the ‘Top End’ region of the Northern Territory surrounding Darwin, south and west to the Katherine-Daly River region, and stretching north and east to the Gove peninsular and Groote Eylandt. The Townsville Hospital and the Cairns Base Hospital cater mainly to individuals from the region of north Queensland surrounding Townsville (including Palm Island), stretching northwest to Mount Isa, and north to Cooktown, Weipa, Bamaga and the Torres Strait Islands. Patients with moderate to severe TBI are transported to the Townsville Hospital’s neurosurgical ward from smaller hospitals in these areas.
Participant recruitment and consent
Eligible to participate in the study were patients meeting the following inclusion criteria: (1) identified as Aboriginal and/or Torres Strait Islander; (2) males and females aged between 18 and 65 years (3) admitted with a TBI, and (4) experienced a loss of consciousness (of any duration), or a period of post-traumatic amnesia (PTA) >24 h (as measured by the Westmead PTA Scale), or injury verified by magnetic resonance imaging or computed tomography.
Nominated allied health staff at each recruitment site screened patients who met the above criteria and were deemed to have the capacity to consent for participation. When a patient was identified, the nominated allied health staff informed them about the project. The research team was notified of patients interested in seeking more information. Reflecting the Indigenous Standpoint Theory of the project, local Indigenous Liaison Officers and Aboriginal Interpreter Services (where possible) were involved in the initial interactions between the research team member and the patient as well as in the consent process. Prior to the initial meeting between the patient and research team member, each patient was asked if they wanted the assistance of an interpreter when discussing the project aims and what was being asked of each participant. Indigenous Liaison Officers and interpreters ensured that consent for participation was voluntary and that each patient had a full understanding of the project. They also advised the research team on implementing the project within the cultural protocols of each participant. For example, how the participant should be addressed in conversation, communication styles and approach to discussing the project. For each participant, the research team member described the project in full and provided them with an information sheet.
Of the 25 participants recruited to the study prior to discharge from the hospital (Bohanna et al., Reference Bohanna, Fitts, Bird, Fleming, Gilroy, Maruff and Clough2018), 11 could be located for an interview at 6 months post-discharge.
Data collection
The semi-structured interviews were conducted 6 months post-discharge, face-to-face, and at the time and location nominated by the participant. Interviews aimed to elicit participants’ life experiences since leaving hospital. Questions in the interview included: ‘How has life changed since you came home from hospital?’ ‘What has helped you or made it easier since you went home?’ Supporting Indigenous Standpoint Theory principles, the interview questions were presented by the research team to Indigenous community health organisations for discussion and feedback prior to data collection and were adjusted to accommodate recommendations accordingly. Topics discussed by the participants included: key events which had occurred and influenced their life during the 6-month transition from hospital to home, contextual factors which had either supported or challenged their life during this period, feelings about their hospital experience together with thoughts about the future and recommendations to improve the transition experiences for other Indigenous patients. Handwritten verbatim notes of interviews were made. Interviews were audio-recorded where participants gave consent. Interviews averaged approximately 1 h in duration (range 0.5–2.5 h). No participants requested an interpreter for time point three interviews.
To augment the interviews, researcher’s reflections at the end of each interview were used together with notes recording key information reported during phone calls with participants. This information was drawn upon to support the themes raised in the qualitative interviews and is referred to as ‘case notes’ throughout the paper.
Analysis
All interviews were analysed thematically using an exploratory thematic analysis (Braun & Clarke, Reference Braun and Clarke2006). The process was inductive, as the data were not being fit into a pre-existing framework. Themes were considered in terms of prevalence and space within each account, as well as how many times they appeared across the dataset. The analysis was completed by two authors (M.F. and K.B.). Participants’ interviews regarding their transition experiences were analysed using the following stages:
The first phase of analysis involved separately re-reading transcripts and listening to the recordings to increase familiarity with the data. Once familiar with all aspects of the interviews, each researcher made handwritten notes on the transcripts in order to generate an initial list of ideas and identify early concepts for coding. The next phase involved the production of initial codes. All interviews were coded in separate Nvivo version 11 versions for each coder. The intention was to identify aspects that might form the basis of repeated patterns throughout the dataset (Braun & Clarke, Reference Braun and Clarke2006). Authors M.F. and K.B. discussed these initial ideas and, where agreement was reached, codes were organised into groups and initial themes were developed. Where uncertain, codes were placed in ‘miscellaneous’. The coders discussed all themes, including ‘miscellaneous’, and where agreement was reached, themes were developed.
The next phase involved reviewing the data extracts coded under each theme and deciding whether they fit with the theme and if they formed a logical pattern. Independently, each coder completed this process before reaching consensus and amending on Nvivo. To ensure the themes reflect the full dataset, the authors M.F. and K.B. re-read all the interview transcripts against the refined themes. Data were coded to the new themes and subthemes. Again, where uncertain, codes were placed in ‘miscellaneous’. The coders discussed all themes, including ‘miscellaneous’. In the next phase, each theme was renamed, defined and summarised. Underpinned by this process was that each theme needed to have clear parameters and be fit into the broader narrative of the complete data. All data extracts were checked for accuracy. The final phase involved writing up the findings to reflect the interpretation of the data.
Aligning with the National Health and Medical Research Council guidelines for conducting research with Aboriginal and Torres Strait Islander Australians (National Health and Medical Research Council, 2018) and Indigenous Standpoint Theory, the research team undertook data verification. Workshops were facilitated at two of three major data collection sites with representatives from hospitals, including occupational therapists, speech pathologists, Indigenous Liaison Officers, mental health clinicians and social workers. Community-based services invited included Indigenous health services, allied health services, domestic violence services, mental health, alcohol and drug services, and justice services, including legal aid and victim assist. Representatives from the NDIS were also invited to attend the workshops. The interview themes were a component of the broader workshop content presented for discussion. The research team sought feedback about the interpretation of the themes.
Ethics
The project had ethical approval from the Human Research Ethics Committee of the Townsville Hospital and Health Services District (HREC/15/QTHS/220), the Human Research Ethics Committee of the Northern Territory Department of Health and Menzies School of Health Research (HREC-2015-2491), James Cook University (approval no. H6489) and the University of Queensland Behavioural and Social Sciences Ethical Review Committee (approval no. 2015001591).
Results
Participants
As presented in Table 1, the ages of the 11 participants ranged from 24 to 54 years (mean 40 years, SD 11 years). Table 1 presents the cause and severity of injury for all participants. Eight interviews were conducted at the participants’ homes. One interview was completed at a retirement village, one at a university facility, and another was completed over 2 days at a local fast-food restaurant. Eight participants lived in regional areas, while three were located in remote communities. Nine interviews were recorded; handwritten notes were taken for the other two interviews. Four participants were employed prior to their TBI. At the time of admission, five participants lived in the home of a family member, three participants lived in their own home, two were living in government housing and one at community-based accommodation for long-term hospital patients.
Characteristics of Participants and their Injury (n = 11)
Themes
Five themes were identified: hospital experiences, engaging with medical and community-based supports, health and wellbeing impacts from the injury, everyday living, and family adjustments post-injury. Table 2 lists the selected qualitative evidence. The characteristics of participants commenting (gender and residential location) are included to support the quotes.
Statements Relating to the Subthemes
Theme 1: Hospital Experiences
The hospital experience varied across the participants. Some participants found the experience ‘comfortable’, while others reported feelings of loneliness. All patients expressed their gratitude for the communication with nurses; however, many described difficulties in engaging with treating clinicians. The hospital experience theme was divided into engagement barriers, environmental challenges, and supports.
Engagement barriers
Six participants described their interactions with treating clinicians as limited and lacking. Participants sought more information about their injury and treatment from the nursing staff. Some of the interactions resembled institutional racism and disablism, where the treating medical and clinical staff did not respectfully communicate with Indigenous participants. One participant formed the belief their injury was not serious due to the doctor not making a real attempt to explain the seriousness of the injury. This resulted in the participant discharging against medical advice:
Oh well, they told me that the doctor wouldn’t, he’d just ask how you going and that, because he knew that I wouldn’t understand, or I wouldn’t get it what he was telling me. [.] I thought well if no one is going to tell me that I’m supposed to be here I might as well go home. (Man, regional, full quote in Table 2, quote A)
The participant perceived that the doctor did not speak to him due to his limited understanding of medical terminology: ‘he knew that I wouldn’t understand, so it was no good him standing there wasting all my oxygen, telling me something that I wasn’t going to understand anyway’ (Man, regional).
Confrontation with hospital staff also contributed to another participant’s interest in discharging against medical advice. In one instance, the participant returned late to the hospital after his approved leave, whereby he was accused by the staff of drinking alcohol while outside the hospital grounds:
Well I went out, because I told them I don’t get much sleep, I can’t sleep on the bed. So the days I go to the motel where my sister was and I just crashed there, catch up on my sleep, but I lost track of time, and yeah I was asleep, my sister went out, I didn’t know they [hospital staff] were trying to, calling me up on the phone until I woke up, missed calls, I think I was still half asleep when I answered and they thought I sounded drunk. I think when I got back like, I told them, [unclear] you didn’t even, did you even smell any alcohol on me, after that, I just, I just wanted to leave. (Man, remote)
Environmental challenges
Four participants reported environmental challenges with the hospital. While it was common for participants from remote localities to have nominated family visit hospital and contribute to discharge planning, the hospital had limited ability to accommodate family members for long periods of time:
She stayed in the hospital on the floor. She didn’t sleep good there. She had a mattress, it was no good sleeping there for her, she was always tired. (Man, remote)
Other environmental qualities of the hospitals contributed to difficulties for participants, including limited space to take children and family, sensitive to air-conditioning, difficulties in accessing outdoor space, food and noise (case notes):
Like just being really loud and inconsiderate. And like there was one point where this guy he must have brought his radio in and he was next to me and he just played loud music. (Woman, regional; see quote B for full quote)
Supports
Three participants reported satisfaction with treatment by the nursing staff; however, participants regarded family to be their main support. Encouragement to stay in hospital, along with submitting requests to hospital staff to assist with linking participants in with their family members unable to attend the hospital and taking participants on approved leave from the hospital (case note) were supportive activities completed by family members (see quote C). Requests made to the hospital staff included using the hospital ward telephone or arranging videoconferencing between the hospital and a clinic in the participant’s home community. Where possible, hospital staff ensured these requests were met.
Theme 2: Engaging with Medical and Community-Based Supports
Concerning engagement with at least one medical and community-based service post-discharge, multiple barriers prevented them from engaging with services post-discharge generally. This theme was divided into four subthemes: barriers to accessing post-discharge medical care, engaging with post-discharge medical care, contact with the criminal justice system and engaging with support services.
Barriers to accessing post-discharge medical care
Seven participants mentioned barriers to accessing post-discharge medical care. For some participants, a lack of desire for rehabilitation services during their recovery at home was connected with their wish to re-engage with their loved ones and in activities they had limited capacity to perform while in hospital:
I don’t know, I just had other stuff on my mind. Like I was going down at rehab all last year. Well not all last year, but since the accident. And when I come out of hospital, I still go back to rehab. I needed a little break. And my missus, when, like she keeps going back and forward from Katherine. So I hardly see her. (Man, regional)
Participants who sustained TBI through assault had frequent appointments with prosecutors and/or attended court proceedings. At times, these additional commitments impacted their ability to attend medical care appointments (see quote D).
Participants were more likely to continue with rehabilitation appointments when these were easily accessible. Free community-based services and/or free transport for pick up and return were important for most study participants who were recipients of the Newstart Allowance (quote E). Cost of medical services was considered a barrier for some participants. Financial difficulties, including the inability to afford phone credit, made it difficult to access medical services for many participants.
Navigation to health services was difficult for participants. As a part of manging their own health care, participants were required to communicate directly with multiple health services and human services, including Centrelink, leading them to disengage from services. Centrelink is a part of the Department of Human Services and delivers Australia’s social security system. One participant was aware of the NDIS; however, he reported frustrations when attempting to access this scheme:
I was like are you for real, I just, I’m messing with youse and now you want me to mess with someone else and I gotta go to five companies when I get go on the pension and get on the bus myself and go to the hospital. I don’t have to worry about visiting five companies and telling everyone my story just so I can get from here A to B, so yeah that, like made me, more, ah, frustrated. (Man, regional; for the full quote see quote F)
Other participants stated that they were uncertain if such services were available in their community: ‘I have to think, like there’s not much help after that, I don’t know what services there to help’ (Man, remote).
Impaired memory because of the injury also impacted participants’ ability to engage in rehabilitation and medical appointments, with several participants reportedly missing follow-up appointments with medical practitioners due to poor memory (see quote G).
Engaging with post-discharge medical care
Seven participants engaged with post-discharge medical care. They reported using their local community clinic or Indigenous medical service; however, for many participants, this medical care did not address the conditions associated with the injury, but provided medication for mental health conditions and general medical check-ups.
Medical care by the local clinics for participants post-discharge did not always meet their expectations. Participants reported receiving little support from services, including local health centres, in coordinating medical and allied health appointments, as illustrated by the quote below:
From [medical service name], but in a way they are not really helping, like the way I thought they would have help. Like um set them appointments up, like when I talk to the doctor they haven’t got a person to do them sort of thing. That’s why I have to go through that government building to talk to people. They should really be a help you know, a strong, um, health centre should have them sort of things. [Interviewer: that they just coordinate the care for you?] P: Yeah. (Man, remote)
During the transition period, one participant was re-admitted for an additional surgery related to the TBI event. The participant felt the surgery reduced the progress he had during inpatient and outpatient rehabilitation (see quote H).
Engaging with support services
Six participants engaged with allied health services on at least one occasion during their transition, which provided assistance with walking aids and educating participants on activities to improve their mobility and strength:
The occupational therapist gave me some kind of activities to do, I just have to get them and actually have a look and read it. But sometimes they just give you too many things to read. Sometimes when I read it’s just reading words, it’s not digesting, it’s not going in. (Woman, regional) (also see quotes I and J)
As the quote illustrates, some of the information was overwhelming for participants to comprehend early in their transition.
Psychological assistance was sought by two participants who experienced mental health issues following the injury. One participant accessed psychological support for trauma related to his assault with the aim to reduce the burden he may place upon his family (see quote K). One participant reported accessing victim support.
Support from participation in the research
Although this was an exploratory study, due to its longitudinal nature, researchers had spent considerable amount of time talking to the participants. Six participants reported that connecting with a research team member provided some support, as illustrated by the following quote: ‘I always feel happy when youse call, like I told you on the phone, [I] get some things out, little bit, and when youse come and visit me, I’m happy to see other faces’ (Man, remote). Time spent with the research team was considered by participants to have benefitted their mental health.
Two participants felt the regular phone conversation, including discussions on their challenges in a non-judgmental and confidential environment, provided them with a support option otherwise not available to them:
Yeah, like, things that you say, how are you, how’s things. And somethings I do talk, you know, this is things that I don’t tell everything alright but I don’t like this, I think a few things I say to you, that sort of takes things off my head to, things that I’m, say to you because I know that information won’t go anywhere else… (Man, remote)
Theme 3: Health and Wellbeing Impacts from the Injury
During the transition period, many participants reported injury-related impacts on their physical, cognitive and psychological wellbeing. The challenges included physical impairments, fatigue, memory deficits, communication difficulties, emotional changes and stress from being engaged with the criminal justice system. This theme was broken into three subthemes: changes in abilities, including both physical and cognitive; psychological impacts; and contact with the criminal justice system.
Changes in abilities
All participants reported that injury-related deficits significantly impacted their ability to return to a normal life. Participants were unable to perform daily activities, including household chores, driving and activities of daily living such as sports and cooking:
yeah, a lot of stuff changed. Couldn’t do the normal stuff that I normally do. Like I couldn’t even cook myself something to eat. (Man, regional) (also see quotes L and M)
Participants also reported that the lack of independence stemming from physical impairments also reduced their ability to fulfil family and cultural roles:
I don’t get around the community much now. It is really hot here and someone has to push me around. I haven’t been out hunting. (Man, remote)
Their inability to hunt could lead to food insecurity. Participants reported more conflict with family and neighbours along with troubles with emotional regulation and impulse control.
And that’s things that head injury happens to you. You don’t stop and think no more, yeah. It’s real, it’s something that is hard to accept or explain or, no one knows what actually happens with your head when it gets damaged. (Man, regional)
Other deficits included cognitive and fatigue issues.
Psychological impacts
Nine participants reported several psychological concerns related to the injury. Changes in behaviour and emotion, fear of a subsequent head injury and reluctance to share their concerns with family were some of the issues.
Fear of a subsequent head injury is illustrated by the following quote:
I used to do everything for myself, working, getting around here in the community. Now it is like sit down, sit down, sit down, you might fall. I worry for falling and hitting my head there. [points to the ground] I worry for falling on the ramp when walking. (Man, remote)
Assault-related injuries were usually caused by a person known to the participant, such as a family member, or, in the case of participants from remote localities, a member of the community. Two participants had ongoing concerns for their safety from repercussions, experienced fear and sleeping problems, and avoided locations where there was a high prospect of seeing the perpetrator:
I was a bit scared to go to town, to start trouble again, but, get hit again. (Man, regional)
Part of the reason that I did come back cause I heard the two fellas that assaulted me were not supposed to be here and I was really happy for that and then when I did come back they were here and the first day I seen em back, we run into each other at the shop, inside the shop and the shop manager [unclear] shaking like hell, hey your shaking, yeah cause they’re in here. That’s the worst part about it you know, seeing them back [here]. (Man, remote)
According to case notes, this participant used alcohol to cope with his fear and reported a suicide attempt during the transition period.
Two participants reported having psychological issues prior to the injury, including depression and anxiety. These participants felt the head injury exacerbated their earlier issues (see quote N).
Contact with the criminal justice system
Five participants reported contact with the criminal justice system. Engagement with the criminal justice system was associated with the injury event and/or offences committed by the participant during follow-up. Legal and court matters were seen as a major burden during their recovery, and typically related to participants who sustained injuries through domestic and family violence.
Participants stated that the court process contributed to worry and stress:
…like when the court case was going on and just dragging on and kept getting adjourned that was stressing me out. (Woman, regional)
Other participants were unsure if their matter was being investigated by authorities, despite police visiting the scene of the incident and/or visiting them at the hospital. Participants were unsure of who to approach to receive an update on the investigation. For one participant, pursuing the investigation became less of a priority during the transition period (see quote O).
One participant was even convicted for the offence relating to the incident where he sustained TBI:
Oh they ah, they ah, they wanted to charge me with assaulting an officer but then they dropped that and they’ve given me a, what was it, carrying dangerous weapon in a public place, scaring the public or something like that. (Man, remote)
Another participant committed offences during the follow-up, including obstructing the police and causing public nuisance (see quote P). Upon receiving a probation order for these offences, the participant intended to seek assistance from his probation officer to address pre-injury issues, including outstanding fines, that might impact the validity of his driving licence as well as accommodation issues.
Apart from the participants reported here, two others received prison sentences during their transition – for assault and drunk driving, respectively (case notes).
Theme 4: Everyday Living
The challenges experienced by our participants in returning to everyday living focused on basic needs, including accommodation and financial difficulties. Participants reported employing a number of coping strategies to deal with adjustments in their life. Many participants developed a goal of ‘getting work’ with the aim of restoring their lifestyle to how it has been prior to their injury.
Accommodation challenges
Accommodation was a common challenge experienced by our participants during their transition, with six participants reporting difficulties. Unstable accommodation contributed to stress and concerns for the future, as illustrated by this quote:
I don’t want to say I am struggling but I am struggling [unclear]. I want an accommodation of my own, see. [MF: Yeah]. So I can stop thinking about accommodation. … And it’s going from bad to worse, getting to worse. Like, I’ve been sleeping in the parks, couple of nights. (Man, regional)
Participants reported their accommodation was not conducive to a good transition after TBI because it was noisy, overcrowded or frequented by violence (see quotes Q and R).
Although an experience of unstable accommodation was usually not a direct result of the TBI, five participants reported that unstable accommodation prior to the injury contributed to their worries during their recovery.
Coping strategies employed by self
Six participants employed coping strategies to reduce their risk of further injury, including avoiding entering into situations that can cause further assaults, being organised and reducing the risk of falls:
In a way that I have changed. I’m a bit more organised now. Tidier, clean, [….] Maybe because organisation and tidy, maybe because of the hazards. If I fell again and hurt my head I think that’s probably what it’s from. (Woman, regional)
To manage memory impairment and language difficulties, participants employed a range of strategies, including writing down appointments, setting goals and completing speech exercises (see quotes S, T, and U).
Eight participants consumed alcohol during the transition phase. For some participants alcohol helped them to cope with boredom and stress. Other participants viewed their TBI as a second chance at life, acknowledging the role alcohol played in their trauma. One reported reducing their drinking:
…well I sort of stopped, well cut down on going out and drinking and all that and yeah, which is good (Man, remote)
Two other participants re-engaged with cultural activities:
I like get out of the house go out of town for the weekends, fishing, hunting. (Man, regional)
Completing art for others, I like doing things for people [art] because I feel like I’m important. If I don’t, if I’m doing nothing, that’s why I go down [depression]. (Man, regional)
Financial support and navigating Centrelink
Five participants reported receiving financial support. At the time of their injury, the majority of participants were recipients of Newstart Allowance. Newstart Allowance supports individuals who are not employed and looking for work. Some participants received assistance from others in obtaining an income support or medical exemption from Newstart. Two participants reported the need for medical certificates for continuing to receive payments, but did not attempt to contact the hospital and expressed uncertainty regarding the way forward. One participant was contacted by Centrelink during the period of medical exemption, which contributed to his stress and frustration:
No, they’re trying to send me, ‘you’ve got an appointment on this date.’ How can I have an appointment with them when I’m on sickness benefits? Go away. You know, they try and get right in there on ya. I don’t like it. […] And they started playing with me dole. And really they’re trying to argue with medical facts. It’s factual. […] I just went off, saying ‘I’m on medical. What are youse trying to do?’ (Man, regional)
While one participant was in the process of applying for disability support pension, he stated that he did not even have money to collect all the documents required to apply (see quote V).
Return to work
Four participants returned to employment within the transition period. One participant reported he had migraine but had to return to work for money: ‘but when I got back I was still getting some migraines and all that. […] Well you need money’ (Man, remote; also see quote W).
Other participants reported their intentions to address barriers that prevented them from re-engaging in employment, including free transport to place of work.
Theme 5: Family Adjustments Post-Injury
As an individual with TBI moves from hospital to home, caregivers take on important responsibilities during this phase. This theme consists of two subthemes, including family support and emotional impacts of family adjustments.
Family support
Eight participants reported receiving family support in performing a broad range of activities, including household chores, communicating with health and human service systems, arranging appointments, financial support and ensuring a quiet space for recovery:
Yeah and if I’m like doing the washing he’ll help me do that. Just like the little things that really help out. Even if I’m frustrated or angry he’ll find a solution to resolve that or if there’s something stressful or if there’s like, he’ll just find a way around something and it just helps me out so much and I never even thought about that. Like he’s good at troubleshooting and resolving things. (Woman, regional) (also see quotes X, Y and Z)
Emotional impacts of family adjustments
Six participants reported being treated differently by family members, contributing to feelings of anger and frustration:
Everybody changed too. Like they treated me differently and yeah. And I like, I didn’t want to be treated different. I wanted everyone to just treat me normal, yeah. […] Like they keep asking me ‘are you alright’? And little things, I want to try and do myself. But they always ask me ‘do you want me to do that for you?’ Just, yeah just sometimes I get angry cause they’re trying to make me feel like, um, I don’t know, just like I can’t do anything myself, yeah. Which I try and do stuff myself. If I can’t do it myself, then I’ll someone to do it. (Man, regional; also see quotes AA, BB and CC)
For assaults committed by a relative of the participant, it was common for participants’ family members to have witnessed the assault. One participant decided not to press charges against the relative who assaulted him, which contributed to unrest in the participant’s family. This participant had to manage this conflicting opinion and advocate his decision to his family:
Yeah my dad rang me and he wanted to know why I wasn’t laying fines and everything and I said well, I ah, um, I said I can’t lay fines cause I don’t remember what happened and we’re black fellas so you take away our freedom so you might as well kill us. You know, I’d rather go to war then go to jail, cause you take away my freedom and keep me locked up then you will be killing me from the inside and I said he’s my cousin so I’m not gonna be the one sending him to jail. (Man, regional)
Discussion
This study aimed to capture the transition experiences of Indigenous Australians after TBI. The transition experiences of Indigenous Australians concerning cognitive and physical impairments and associated challenges were similar to those of other populations discussed before (Abrahamson, Jensen, Springett & Sakel, Reference Abrahamson, Jensen, Springett and Sakel2017; Nalder, Fleming, Cornwell, Shields & Foster, Reference Nalder, Fleming, Cornwell, Shields and Foster2013). However, new findings emerged concerning Indigenous participants’ experiences in hospital and during recovery. These findings highlight that strategies will have to be designed to assist medical professionals and community-based services in ways that fully address the needs of Indigenous Australians during the transition period.
Communication is an essential part of the health care (Dudley, Wilson & Barker-Collo, Reference Dudley, Wilson and Barker-Collo2014; Marrone, Reference Marrone2007; Shahid, Finn & Thompson, Reference Shahid, Finn, Bessarab and Thompson2009). Although some participants felt being supported while in hospital, many felt being excluded from discussions relating to their health. Inadequate communication with treating clinicians can contribute to patients’ limited understanding of their injury and the importance of completing treatment (Amery, Reference Amery2017; Durey & Thompson, Reference Durey and Thompson2012) and not seeking discharge against medical advice (Burnett & Kickett, Reference Burnett and Kickett2009; Einsiedel et al., Reference Einsiedel, van Iersel, Macnamara, Spelman, Heffernan, Bray and Davis2013; Franks & Beckmann, Reference Franks and Beckmann2002; Katzenellenbogen et al., Reference Katzenellenbogen, Sanfilippo, Hobbs, Knuiman, Bessarab, Durey and Thompson2013). There were several examples where interactions between the participants and treating clinicians resembled institutional racism.
The rate of Indigenous Australians discharging against medical advice after admission for a TBI is four times higher than that of non-Indigenous patients (Katzenellenbogen et al., Reference Katzenellenbogen, Atkins, Thompson, Hersh, Coffin, Flicker and Armstrong2018). With patients discharging against medical advice reported to have experienced poorer outcomes (Alfandre, Reference Alfandre2009; Choi, Kim, Qian & Palepu, Reference Choi, Kim, Qian and Palepu2011), efforts to reduce discharge against medical advice among this population must be a priority. There is growing research to highlight systemic discrimination and racism towards Indigenous patients in the health care system. Durey and Thompson (Reference Durey and Thompson2012) describe discrimination and racism in the health care system as multi-layered, where cultural differences are not considered in bureaucratic requirement; interpersonal, where interactions between the patient and health professionals discount the beliefs and practices of the patient; and internalised, where Indigenous patients do not have the platform to assert their right to adequate information and equitable treatment.
Hospital systems and health care providers must critically reflect on their policies and practices to improve the treatment provided to Indigenous patients with TBI. A new approach would shift to a more equitable mainstream medical system and decolonise established practices that discriminate against Indigenous Australians (Durey & Thompson, Reference Durey and Thompson2012). Education for hospital staff and students of medicine and nursing on Indigenous culture, health and health care issues can also help improve cultural competency while transforming negative attitudes, breaking down misconceptions and stereotypes (Durey et al., Reference Durey, Thompson and Wood2012; Hunt et al., Reference Hunt, Ramjan, McDonald, Koch, Baird and Salamonson2015; Paradies et al., Reference Paradies, Harris and Anderson2008; Willis, Wilson, Renhard, Chong & Clarke, Reference Willis, Wilson, Renhard, Chong and Clarke2010).
Participants experienced significant challenges in coordinating their own health care following discharge from hospital. Multiple agency interventions can lead to challenges for Indigenous individuals in understanding the processes, attending appointments and fulfilling the requirements of each service (Gilroy, Donelly, Colmar & Parmenter, Reference Gilroy, Donelly, Colmar and Parmenter2016). Such intervention challenges are compounded by major cognitive deficits, including memory loss and coordination problems, in individuals after TBI. Participants in this study were also often involved in criminal justice proceedings, which often took precedence over other services. Financial, transport, accommodation and psychological issues further complicated access to services. The findings suggest the need for a coordinated transition support approach following TBI. A growing number of studies have advocated a case management approach for supporting individuals following TBI (Abrahamson et al., Reference Abrahamson, Jensen, Springett and Sakel2017; Turner et al., Reference Turner, Fleming, Cornwell, Worrall, Ownsworth, Haines and Chenoweth2007), with coordinated care models for other conditions, including stroke, showing significant benefits for patients’ mental quality of life, depressive symptoms and adherence to self-care practices (Claiborne, Reference Claiborne2006). A coordinated service model approach is required to ensure Indigenous patients are able to access and engage with services in a way that takes into account their complex needs following TBI.
Queensland hospitals recognise the benefits of coordinated support for accessing health services post-discharge with the introduction of nurse navigators. Patient eligibility criteria for referral to a nurse navigator include multiple complex chronic health issues and history of multiple presentations within a short period of time (Queensland Health, 2018). Access to service is also prioritised for patients frequently failing to attend specialist appointments and experiencing social complexities of significance. We believe Indigenous patients after TBI are appropriate candidates for nurse navigators considering they are likely to face a multitude of complex health issues, including ongoing cognitive impairment, vulnerability to violence, mental health issues and injury reoccurrence (Katzenellenbogen et al., Reference Katzenellenbogen, Atkins, Thompson, Hersh, Coffin, Flicker and Armstrong2018). The addition of this support and coordination role could reduce the care role placed upon family members and provide them with the opportunity to be better supported during this period of adjustment (Bohanna et al., Reference Bohanna, Stephens, Wargent, Catherall, Timms, Graham and Clough2013; Jamieson et al., Reference Jamieson, Harrison and Berry2008).
The transition period provides an important opportunity to address the significant role that assault and family violence play in Indigenous TBI rates (Jamieson et al., Reference Jamieson, Harrison and Berry2008; Katzenellenbogen et al., Reference Katzenellenbogen, Atkins, Thompson, Hersh, Coffin, Flicker and Armstrong2018). While a focus on the physical and cognitive impacts of TBI is important for recovery, a transition approach with Indigenous Australians should incorporate interventions that target family violence and alcohol (Zeiler & Zeiler, Reference Zeiler and Zeiler2017). Such programmes after TBI have been shown to be effective in reducing injury reoccurrence in large-scale international studies and are cost-effective (Bell et al., Reference Bell, Gilyan, Moore, Martin, Ogbemudia, McLaughlin and Zarzaur2018; Gentilello, Reference Gentilello2007; Juillard et al., Reference Juillard, Cooperman, Allen, Pirracchio, Henderson, Marquez and Dicker2016). The stress caused upon returning to homes and communities for participants who had been victims of violence was enormous. Experiencing violence creates feelings of fear, uncertainty, shame and causes a range of long-term psychological stress reactions (Dillon, Hussain, Loxton, & Rahman, Reference Dillon, Hussain, Loxton and Rahman2013). Patients of assault-related TBI require support in managing psychological trauma, contact with law enforcement and court proceedings, managing family conflict and living in the same community as the perpetrator. Referral and support to attend an alcohol and violence intervention programme could assist with these potential challenges. Ultimately, engagement in this type of intervention could see an improvement in recovery outcomes and reduction in the reoccurrence of assault-related TBI for Indigenous Australians.
Finally, several study participants reported changing their goals and priorities, with intentions to address alcohol misuse, re-engage in employment, reconnect with family and achieve goals (e.g. have driving licence reinstated). The evidence suggests that a serious injury can precipitate a desire to address harmful behaviours (Nalder et al., Reference Nalder, Fleming, Cornwell, Shields and Foster2013). Narrative and arts-based approaches may play a role in harnessing participant desire to create new possible selves and enable reflecting and learning about oneself while encouraging empowerment and post-traumatic growth (D’Cruz, Douglas & Serry, Reference D’Cruz, Douglas and Serry2017; Levack et al., Reference Levack, Boland, Taylor, Siegert, Kayes, Fadyl and McPherson2014; Ownsworth, Reference Ownsworth2014).
Limitations
There are several limitations that require consideration. The research team members who conducted the interviews were of non-Indigenous background. When preparing to meet with each participant for interview, participants were asked to nominate a location for the interview and if they would like to have a support person present during the interview (e.g. health worker from a local clinic or a family member). Each participant met with the research team member individually, which may have influenced what participants discussed during the interview. The study sample was small, and almost all participants were male. Existing literature suggests there are differences in severity of TBI between men and women, with women reporting higher levels of fatigue, anxiety and depression (Englander, Bushnik, Oggins & Katznelson, Reference Englander, Bushnik, Oggins and Katznelson2010; Liossi & Wood, Reference Liossi and Wood2009) and men reporting greater impacts on their executive functioning (Niemeier, Marwitz, Lesher, Walker & Bushnik, Reference Niemeier, Marwitz, Lesher, Walker and Bushnik2007). Specifically, more research is recommended into the experiences of Indigenous Australian women after TBI. Indigenous Australian women are disproportionately represented among those hospitalised for head injury (Katzenellenbogen et al., Reference Katzenellenbogen, Atkins, Thompson, Hersh, Coffin, Flicker and Armstrong2018), with a significant proportion due to assault (Jamieson et al., Reference Jamieson, Harrison and Berry2008). Although the majority of participants sustained TBI as a result of an assault, the transition experiences reported here are largely those of men. The transition experiences of women following an assault-related TBI may not be reflected in this study.
More research into the perspectives on transition in Indigenous Australians discharging against medical advice is also needed. A large proportion of potential participants discharged against medical advice or ‘absconded’ and were not approachable. Although community-based strategies were employed to reduce attrition (Bohanna et al., Reference Bohanna, Stephens, Wargent, Catherall, Timms, Graham and Clough2013; Lee et al., Reference Lee, Conigrave, Clough, Dobbins, Jaragba and Patton2009), a proportion of consenting participants were also lost to follow-up. One participant passed away during the transition period, and another was at a correctional centre for offences committed during the transition period. The major difficulty related to contacting participants on a working mobile number shortly after discharge. Recruitment in these settings and follow-up can be challenging, and significant efforts were made to locate all participants. Another limitation is the use of retrospective data to investigate transition, given that some participants may have been unable to recall particular events or details about their experiences.
Conclusions and Recommendations
Although TBI is a major cause of disability among Indigenous Australians, there has been limited research exploring their transition experiences. This study aimed to understand the experiences of Indigenous Australians during the 6 months post-discharge, identify the supports accessed during transition and understand the gaps in service provision or difficulties experienced. While some of the transition experiences of Indigenous Australians were similar to those of non-Indigenous Australians, the transition period for Indigenous people was influenced by other pre-injury and injury-related factors. To ensure that such factors do not impinge upon patients’ recovery from TBI, the study identified opportunities for developing transition support interventions. A coordinated approach to transition care would ensure patients receive follow-up contact and ongoing support to link with the relevant health, psychological and justice services. To reduce subsequent injuries, intervention programmes for violence and alcohol must be offered as a priority. Hospital admissions of Indigenous people with TBI provide a significant opportunity for hospital, health care systems and support agencies to work collaboratively to support Indigenous people in making a recovery. Ultimately, intensive and collaborative support from hospitals, health care providers and support agencies during the transition period will assist Indigenous Australians with longer-term recovery goals, address casual factors contributing to their TBI and reduce the likelihood of future re-admission for TBI.
Acknowledgements
We would like to acknowledge and thank those who participated in interviews. Without their generosity and commitment, this study would not have been possible.
Financial support
The study is funded by a National Health and Medical Research Council project, grant 1081947.
Author contributions
I.B., J.G., J.F., A.C., A.E. and P.M. participated in the design of the study and secured funding. M.F., I.B. and K.B. conducted the interviews. M.F. and K.B. conducted primary data analysis. M.F. prepared the first draft of the manuscript. All authors provided critical comments on earlier drafts of the manuscript and approved the final version.
Conflicts of interest
The authors report no conflict of interest. The authors alone are responsible for the content and writing of the paper.
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.
