Introduction
The strength and resilience of the First PeoplesFootnote 1 of Australia has frequently been noted (Dudgeon, Wright, Paradies, Garvey, & Walker, Reference Dudgeon, Wright, Paradies, Garvey, Walker, Dudgeon, Milroy and Walker2014; Hollinsworth, Reference Hollinsworth2013; Krieg, Reference Krieg2009). However, the repercussions of ongoing oppression, dispossession and exclusion, including the forced removal of children from families, and ongoing racism and discrimination, have marginalised many Aboriginal and Torres Strait Islander peoples (Dodson, Reference Dodson2010). The impacts of health and social inequalities between Indigenous and non-Indigenous Australians are well documented and include higher rates of chronic illness, mental illness, disability, unemployment, and reduced life expectancy (Australian Institute of Health and Welfare [AIHW], 2017; Holland, Reference Holland2018). Aboriginal and Torres Strait Islander Peoples are significantly over-represented in homeless and disability populations (AIHW, 2011a; 2011b; Council of Australian Governments [COAG], 2013). Homeless Indigenous people with disabilities are amongst the most marginalised in Australia, typically experiencing extreme disadvantage. However, the needs and experiences of Aboriginal and Torres Strait Islander Peoples who experience homelessness and disability are not well understood (Grant, Zillante, Srivastava, Tually, & Chong, Reference Grant, Zillante, Srivastava, Tually and Chong2017; Rivas Velarde, Reference Rivas Velarde2018). Research that articulates the perspectives of Aboriginal and Torres Strait Islander Peoples experiencing disability and homelessness is needed to guide policy and practice reform.
Homelessness in Australia
In Australia, homelessness is an increasing problem, which perpetuates disadvantage and social exclusion. Homelessness figures include people residing in supported accommodation, temporary accommodation or ‘couch surfing’, severely overcrowded dwellings, and people ‘sleeping rough’ in outdoor public spaces. More than 116 000 Australians experience homelessness daily, which accounts for 50 persons in every 10 000 of the population (Australian Bureau of Statistics [ABS], 2016). For Aboriginal and Torres Strait Islander Australians, the figures are much worse. Representing just 2.8% of the total Australian population (ABS, 2016), Indigenous Australians make up 28% of the homeless population (488 per 10 000 of the population) (AIHW, 2014). Homelessness can affect multiple aspects of a person’s life including their physical and mental health, employment and educational opportunities, and social and community inclusion (AIHW, 2017). The reasons that people become homeless, and remain stuck in cycles of homelessness, are complex. Factors such as poverty, a lack of affordable housing, mental illness, disability, cognitive dysfunction, domestic violence, family breakdown, alcohol and drug misuse, and periods of incarceration can all be associated with causing and perpetuating homelessness (ABS, 2016; Spence, Stevens, & Parks, Reference Spence, Stevens and Parks2004).
Neurocognitive Disability in Homeless Populations
Neurocognitive disability (NCD) relates to any disorder of the brain affecting cognitive, physical, emotional and/or behavioural functioning, such as acquired brain injury (ABI), traumatic brain injury (TBI), dementia, impairment related to alcohol and drug use, infections, and Foetal Alcohol Spectrum Disorder (FASD) (Townsend et al., Reference Townsend, McIntyre, Lakhani, Wright, White, Bishara and Cullen2018). NCD has been defined as any acquired disorder of the brain where the primary clinical deficit is in cognitive function (American Psychological Association [APA], 2013). Cognitive function relates to the neuropsychological processes of mental functions such as memory and attention; and executive functions such as those involved with planning and behaviour control (Spence et al., Reference Spence, Stevens and Parks2004). People with NCD may experience a range of problems including poor judgement; difficulty interpreting social settings; poor memory, concentration, decision-making and problem-solving; and behavioural issues including impulsivity and anger outbursts (Brown & Kelly, Reference Brown and Kelly2012). High rates of NCD have consistently been found in homeless populations (Beer et al., Reference Beer, Baker, Mallett, Batterham, Pate and Lester2012; Burra, Stergiopoulus, & Rourke, Reference Burra, Stergiopoulos and Rourke2009; Topolovec-Vranic et al., Reference Topolovec-Vranic, Ennis, Colantonio, Cusimano, Hwang, Kontos and Stergiopoulos2012). One Canadian study found that a history of head injury was the most commonly reported chronic health condition amongst a homeless cohort (Nikoo, et al., Reference Nikoo, Motamed, Nikoo, Strehlau, Neilson, Saddicha and Krausz2014). People with NCD face an increased risk of becoming and remaining homeless, and are more vulnerable to harm than homeless people without NCD (Backer & Howard, Reference Backer and Howard2007). People with NCD who are homeless are more likely to become homeless earlier, and are more likely to experience co-occurring problems such as mental illness, substance misuse, and suicidal behaviours (Hwang, Reference Hwang2008; Mackelprang, Harpin, Grubenhoff, & Rivara, Reference Mackelprang, Harpin, Grubenhoff and Rivara2014). NCD can significantly impact the capacity of individuals to engage with and benefit from homeless services, and services can struggle to understand the complex needs of clients with NCD (Backer & Howard, Reference Backer and Howard2007; Burra et al., Reference Burra, Stergiopoulos and Rourke2009).
Marginalised Indigenous people, including those who are homeless, experience high exposure to NCD risk factors such as violence, chronic illness, head trauma, substance misuse, and FASD (Dingwall & Cairney, Reference Dingwall and Cairney2009). There is limited research investigating NCD in Aboriginal and Torres Strait Islander populations, but rates appear to be high (Cairney, Clough, Jaragba, & Maruff, Reference Cairney, Clough, Jaragba and Maruff2007; Lo Giudice et al., Reference Lo Giudice, Smith, Fenner, Hyde, Atkinson, Skeaf and Flicker2016; Massey, Jane, Lindop, & Christian, Reference Massey, Jane, Lindop and Christian2013; White et al., Reference White, Townsend, Lakhani, Cullen, Bishara and White2019). Indigenous people, particularly women, are significantly over-represented amongst those hospitalised for head injury due to assault (Jamieson, Harrison, & Berry, Reference Jamieson, Harrison and Berry2008), and are exposed to increased risk of geriatric syndromes, such as dementia at an earlier stage of life (Lo Giudice et al., Reference Lo Giudice, Smith, Fenner, Hyde, Atkinson, Skeaf and Flicker2016). Research investigating homelessness and NCD in Aboriginal and Torres Strait Islander peoples is rare, and the authors are not aware of any qualitative studies in this area. Understanding the perspectives of Aboriginal and Torres Strait Islander people with NCD who are homeless is vital to identify service gaps, and inform culturally safe and appropriate human services responses. Utilising culturally safe and respectful methods, the current study sought to understand the experiences and perspectives of homelessness for Aboriginal and/or Torres Strait Islander Peoples with NCD, in order to determine how to better support this group. Implications for disability policy and services development and reform are discussed.
Method
This paper relates to the qualitative component of a study undertaken to investigate NCD amongst people residing in a homeless shelter in regional Queensland, Australia (Townsend et al., Reference Townsend, McIntyre, Lakhani, Wright, White, Bishara and Cullen2018; White et al., Reference White, Townsend, Lakhani, Cullen, Bishara and White2019). The broader study arose out of a need identified by Indigenous community members, Elders and cultural advisors for better understandings about the extent and nature of NCD amongst marginalised people. Proper Way protocols guided research processes.
‘Proper way’ is a phrase used to describe ways of doing business in Aboriginal and Torres Strait Islander communities compatible with the community’s values and customs. It encompasses observable behaviours and intangible, spiritual aspects. Prior to the research being undertaken, relationships were established between the research partners, the homeless service, and community stakeholders. Traditional Owners, Elders, and an Indigenous research manager/cultural advisor (IRMCA) provided guidance to ensure that the research was culturally safe. The research used culturally appropriate methodology and included neurocognitive and functional assessments. Participants in the broader study were purposively sampled over a three-month period, using homogenous sampling methods (i.e., people with lived experience of homelessness). Throughout the three-month period, 136 (Indigenous and non-Indigenous) persons utilised the service, with 60 people (44 Indigenous) consenting to participate in the broader study (see Townsend et al., Reference Townsend, McIntyre, Lakhani, Wright, White, Bishara and Cullen2018 for results). The IRMCA advised that a qualitative component representing the voices and perspectives of participants was needed to ensure that the methodology was culturally safe and respectful. This paper reports on these qualitative interviews (in accordance with the Consolidated Criteria for Reporting Qualitative Research [COREQ 32-item checklist; Tong, Sainsbury, & Craig, Reference Tong, Sainsbury and Craig2007]).
Ethical considerations
Western scientific research methods are tied to histories of colonisation (Humphery, Reference Humphery2001) and have been described as the ‘embodiment of colonial power imbalances’ (Maar et al., Reference Maar, Lightfoot, Sutherland, Strasser, Wilson, Lidstone-Jones and Williamson2011, p. 748). Martin and Mirraboopa (Reference Martin and Mirraboopa2003) coined the term ‘terra nullius research’ to draw parallels between the colonialist declaration of Australia as terra nullius (unoccupied), and Western research methods which fail to consider Indigenous knowledges, customs and perspectives (p. 203). There is an increasing acknowledgement that non-Indigenous research practices have involved the exploitation of Indigenous peoples, and the marginalisation of Indigenous knowledge (Bainbridge et al., Reference Bainbridge, Tsey, McCalman, Kinchin, Saunders, Watkin Lui and Lawson2015; Laycock, et al., Reference Laycock, Walker, Harrison and Brands2011). Historically, Indigenous research has benefited researchers rather than Aboriginal and Torres Strait Islander Peoples, while reinforcing negative stereotypes in ways that harm Indigenous communities (Maar et al., Reference Maar, Lightfoot, Sutherland, Strasser, Wilson, Lidstone-Jones and Williamson2011; Tuhiwai Smith, Reference Tuhiwai Smith1999). Research has typically failed to represent the knowledge, practices, values and interests of Indigenous peoples (Cochran et al., Reference Cochran, Marshall, Garcia-Downing, Kendall, Cook, McCubbin and Gover2008; Hall, Reference Hall2014). In addressing these harms, ethical research concerning Aboriginal and Torres Strait Islander peoples must be perceived as beneficial by the peoples and communities involved; requiring collaborative methods, and culturally safe and appropriate engagement and research processes (Australian Institute of Aboriginal and Torres Strait Islander Studies [AIATSIS], 2012). The current study is reflective of these ethical requirements, and was driven and guided by the Aboriginal and Torres Strait Islander communities with whom the research took place. Ethical approval was obtained (protocol HREC/14/QCH/122-941). Informed consent was obtained from all participants.
Research design
Underpinned by a yarning methodology (Bessarab & Ng’andu, Reference Bessarab and Ng’andu2010; Geia, Hayes, & Usher, Reference Geia, Hayes and Usher2013), this qualitative study sought to understand the experiences of homeless Aboriginal and Torres Strait Islander people with NCD residing in regional Queensland. Yarning – an ‘Indigenous cultural form of conversation’ (Bessarab & Ng’andu, Reference Bessarab and Ng’andu2010, p. 37) privileges Indigenous perspectives, experiences and worldviews, allowing for the voices of homeless Indigenous people to be heard and responded to (Carnes, Reference Carnes2011; Walker, Fredericks, Mills, & Anderson, Reference Walker, Fredericks, Mills and Anderson2014). Yarning methodology underpinned research development and data collection processes. The yarning process facilitated trust and relationship building, and enabled participants to share their stories within a culturally safe and respectful setting (Carnes, Reference Carnes2014; Evans, Hole, Berg, Hutchinson, & Sookraj, Reference Evans, Hole, Berg, Hutchinson and Sookraj2009). The study design was informed by the principles of participatory action research (PAR), which seeks to promote social justice, transformation and collaboration (Reason, Reference Reason, Denzin and Lincoln1994), with participant experiences central to knowledge creation (Evans, Miller, Hutchinson, & Dingwall, Reference Evans, Miller, Hutchinson, Dingwall and Leavy2014). The research design included the translation of results into ‘transformative practice’ (Evans et al., Reference Evans, Hole, Berg, Hutchinson and Sookraj2009, p. 895) through the inclusion of Indigenous stakeholders throughout the research process. Ongoing yarning sessions with stakeholders provided opportunities to feedback results and build service and community capacity to understand and respond to this cohort.
Sample & participants
Participants were recruited over a three-month period from a sample of people residing at a crisis accommodation service (homeless shelter) in regional Queensland. The homeless shelter provides temporary overnight accommodation, meals, and hygiene facilities for up to 40 clients per night. Shelter residents were invited to participate in a yarning component, which was recommended by the IRMCA as culturally appropriate. A total of 21 individuals presenting with NCD participated in the yarning component (15 Aboriginal; 5 Torres Strait Islander; 3 did not specify, but identified as Indigenous; 11 male; 12 female). NCD was identified through clinical assessment and/or observation, and self-report of head injury with loss of consciousness, and/or memory impairment. Reported ages ranged from 19 to 63 years (M = 42.50 years; SD = 13.88 years). Given the small number of Torres Strait Islander participants, and no clear points of difference identified, the authors respectfully combined data, while acknowledging the distinct differences of Aboriginal and Torres Strait Islander cultures and communities.
Materials
Materials for this study included: (a) a participant information sheet and informed consent note; (b) a semi-structured, culturally appropriate, yarning schedule. The yarning schedule was underpinned by Western research constructs (i.e., semi-structured composition) and Aboriginal and Torres Strait Islander ‘Ways of Doing’ (i.e., a synthesis and an articulation of ‘Ways of Knowing’ and ‘Ways of Being’) (see Martin & Mirraboopa, Reference Martin and Mirraboopa2003). This combined approach sought a harmonisation of structures and procedures (Martin & Mirraboopa, Reference Martin and Mirraboopa2003). Aboriginal and Torres Strait Islander ‘Ways of Doing’ are reflected in key features of the yarning sessions (Appendix A). The finalised semi-structured yarning schedule comprised 20 individual items across three clusters reflecting the study research questions, namely: understanding past experiences, understanding present experiences, and investigating perceived future experiences. Appendix B provides a sample of questions organised according to these clusters. Yarning sessions explored participants’ family backgrounds, childhood experiences, education, employment, child and adult structures and relationships, health and disability, experiences of housing and homelessness, the criminal justice system, and alcohol and drug usage. The yarning schedule reflected a Proper Way conceptual map for interviewers; however, there was inbuilt flexibility to enable participant responses to influence how the session unfolded.
Procedure
The yarning schedule was developed over three phases. During phase one, a set of questions and topics were developed by the principal investigator (first author) to explore the individual experiences of Indigenous people residing in the homeless shelter. In phase two, the principal investigator and the IRMCA reviewed topic areas for cultural relevance and appropriateness. Additional topic areas were identified to ensure that all possible areas of relevance were conceptualised. In the third and final phase, the IRMCA and the principal investigator were advised by Indigenous Elders and respected community members regarding the questions, themes, and language included.
Prior to data collection, the IRMCA was embedded in the shelter for a 10-week period to build trust with potential participants, and allow people to hear about the research and ask questions. The advice of Elders and community leaders (including those who resided at the site for significant periods of time during the project) was sought throughout the project to ensure respectful relationship building, participant engagement and progress. At the commencement of the project, Traditional Owners and Elders associated with the shelter conducted a smoking ceremony as a blessing of the research project and investigators. Individual yarning sessions were conducted with consenting individuals in locations chosen by participants (e.g., lunch room, garden, or carpark). The IRMCA ensured the cultural safety of each participant was paramount. The duration of the yarning session was primarily determined by the participant and averaged approximately 45 min. Permission to audio-record the conversation was provided by 18 participants. Data from the remaining five participants were manually recorded using field notes. Audio recordings were professionally transcribed verbatim and de-identified. Participant rewards and incentives were not used.
Data analysis
The qualitative data were thematically analysed using an approach outlined by Braun and Clarke (Reference Braun and Clarke2006). To ensure coding consistency and objectivity, all 23 transcripts were analysed by one researcher, with a second analysis provided by a second researcher. Manual line-by-line coding was undertaken by each researcher to systematically identify the ‘most basic segments or elements of the raw data’ that could be meaningfully analysed (Boyatzis, Reference Boyatzis1998, p. 63). In this way, each transcript was open coded to ensure the themes developed in later stages were data driven. A total of 67 initial codes were generated and raw data relevant to each code were collated. All 67 initial codes were confirmed and defined through group discussion before being collated into four potential themes. Throughout this process, the project sponsor and co-author (an Aboriginal woman) provided cultural interpretations of the data. Each theme was subsequently defined and assigned a name that provided a sense of what the theme was about. Four overall themes were generated with a total of 12 sub-themes.
Results
Thematic analysis of the qualitative work identified four major themes:
i) Normalisation of illness and disability;
ii) Trauma and loss;
iii) Socioeconomic disadvantage; and
iv) Hope and disempowerment.
Theme 1: Normalisation of illness and disability
Participants reported co-occurring health conditions including head injury, chronic physical and mental illness, and alcohol and drug use. Participants appeared to regard the burden associated with multiple conditions as ‘normal’ aspects of life, rather than something for which they might seek assistance. Experiencing illness and disability was a taken-for-granted part of participants’ lives, and we have defined this as the ‘normalisation’ of illness and disability. Despite the evidence of NCD and other disabilities, participants typically did not identify as having a disability, and these conditions were poorly managed.
Head injury
Head injury was common amongst participants, and resulted from car accidents, other accidents, violence, and domestic violence. Many participants reported multiple untreated head injuries, often entailing significant periods of unconsciousness and subsequent problems. One participant for instance when asked about a gaping head wound stated, ‘I slipped somewhere in town there and cracked my head and it’s just healing up now’ (ID02). Further discussion revealed he had not sought treatment for this substantial injury. He had sustained multiple head injuries over his life, and experienced memory problems, but had not disclosed this to health professionals. The non-identification of NCD, and a lack of engagement with services was typical of participant experiences. The impacts of NCD in participants’ lives were clear. Poor communication and social skills, and challenges relating to employment and self-care were seen. Confusion, and difficulty relating to others was typified by one participant who said, ‘I go in circles, try to understand, trying to avoid friends and family. It’s the same thing, I argue with them, I go off by myself try to get my own place’ (ID10). These comments revealed the limited capacity of the participant to manage.
Physical and mental illness
Participants typically experienced multiple, co-occurring acute and chronic illnesses, including severe pneumonia, diabetes and hypertension. Many also spoke of problems including psychotic and post-traumatic stress disorder (PTSD) symptomatology. Many had limited understanding of their physical and mental health conditions and treatments. While some received acute care through the district hospital, this was frequently brief emergency care, followed by discharge back into homeless services which were not equipped to deal with their conditions. People reported little community follow-up or out-patient care. Participants saw significant illness and disability as a low priority in the face of daily living concerns including sustenance, pain relief, personal safety, accommodation, and obtaining the basics of personal identification. One participant stated, ‘when this foot was broken …I didn’t go and get it seen to, ‘cause it was payday and I just wanted to go and get my money instead of going to the hospital and getting checked up this one’ (ID19).
Substance misuse
Alcohol, and drug misuse and addiction were widely reported, and associated with NCD for some participants. One participant, for example, described how his ‘brain is just messed up’ (ID7) due to drug use in adolescence. Alcohol problems were most commonly reported. Participants discussed high alcohol use as an everyday occurrence:
Some people live there too and they know me, and they – they alcoholic too…they grab me and they say, ‘Come – just come and join the party’,you know? I don’t want to but no, they won’t allow it. (ID3)
High alcohol use was evident from an early age, and for males was associated with masculinity, such as, ‘taking a beer like a big man’ (ID4). Alcohol frequently resulted in violence and/or risk-taking behaviour, exemplified by one participant who detailed underage drinking leading to a TBI after falling from a roof.
Theme 2: Trauma and loss
Experiences of trauma and loss were strongly represented in the results and were evident in participants’ past and present lives.
Childhood trauma and loss
Participants reported adverse childhood experiences including abuse, neglect and exposure to violence, family loss and instability, and dislocation from land and culture. This often resulted in participants being placed in the care of successive family members or step-parents, often with separation from siblings, as this participant described, ‘I left my home…I went backward and forward…I’ve got family there [regional town] too since they split us kids up…sent some to [regional town], send some to the [another location]’ (ID4).
The absence of parental support and guidance was experienced by most participants, and in some cases ongoing abuse or neglect was reported:
Well, she (mother) gave me away, so I took my little sister with me to protect her from dad……… So the old boy, he started…mop handle like that…and he flogged me with that…and my little sister’s trying to protect me. (ID18)
Trauma and loss in adulthood
The impact of childhood trauma and loss was often evident in participants’ current lives, and those of subsequent generations. The loss in adulthood of multiple family members through illness or suicide was widely reported. Family illness and death were a common reason for transience and a precursor to long-term homelessness. Multiple participants reported loss and trauma associated with estrangement from children, either through relationship breakdown, or removal through child protection services. One female participant grieved over the removal of her son:
That’s how long I didn’t see my baby. He never grew up in front of me. And I’m still fighting for him. I gotta get him back…You know, I’m the mama. I didn’t even see him yet…. he’s a big boy. (ID16)
Another described how the trauma of losing her children was linked to her substance use:
I’ve been in rehab 12 times now – since the kids been taken off me, and I just – I just can’t deal with sobriety –Sober, is really fucked. (ID15)
All participants reported estrangement from close family members and traumatic adult relationships.
Domestic violence within and across generations was experienced by nearly all participants. Female participants reported multiple experiences of intimate partner violence and sexual assault. Women and men reported injuries of varying severity received from partners often in the context of alcohol use. For example, one participant presented with a broken rib following a beating from her partner with a stick, and another reported being burnt by her partner. Women reported serious head injuries. One participant whose face was beaten and finger broken said, ‘He said “Oh, I wanted to kill you.” He was choking my neck, and I can’t put up with this’ (ID25). Women were fearful of reporting their partner to authorities and, for myriad reasons, typically remained with abusive partners.
A lack of personal safety and security was an ongoing source of trauma, particularly for people sleeping rough. Women were especially exposed to violence and sexual assault in public space dwelling areas, as one participant explained, ‘I don’t feel that safe…like you think people are watching you sleep… no, it’s not safe (ID7). In this context, violence against women appeared to be the norm for some participants.
Intergenerational trauma and loss
Intergenerational trauma and loss was evident through cycles of family violence. One female participant exemplified this stating, ‘My son hit me. He’s big – six foot tall. And I had all men hit me all of my life, and I don’t need my son to be growing up and start hitting me (ID16). Some participants who had experienced childhood violence or parental neglect had become perpetrators of violence. For others, violence had become a lifelong experience for themselves and their children. For example, a female participant who had received multiple serious head injuries from her partner, stated her children would continue to be exposed to violence when her abusive partner was released from prison:
I shouldn’t, [reconcile with partner] it’s not good for my kids. [I] Need to focus on what’s good for my kids…I’ll probably be there [when he is released from prison]. When I’m not with him there’s a gap. When we’re together it’s filled. Jekyl & Hyde. (ID12)
Loss of land and culture
Some participants spoke of a loss of their land and culture and lost engagement with Elders, traditional practices and lifestyles. In one case, this was due to a State Government removal order, where homes were burned down.Footnote 2 For others, it was associated with family instability and geographical relocation, or the need to relocate to cities due to lack of opportunities in community. Some participants expressed strong longings for traditions and practices from their youth including fishing, hunting, and yarning with Elders. ‘They [relatives still in home town] still have good life, you know, ‘cause they have station and cattle…they still have it’ (ID4). Another said, ‘But…my home, [remote town], oh, deadly paradise…people walking, going hunting’ (ID3). Participants described feeling culturally adrift, lost between two worlds, and unrecognised by both white culture and the modern Indigenous community, as one participant described, ‘young (Indigenous) people…they don’t realise that I had a very important role for my family’ (ID1).
Theme 3: Socioeconomic disadvantage
Participants experienced severe socioeconomic disadvantage in areas including education, employment, imprisonment, poverty, and social exclusion
Education
Few participants were educated beyond primary school. For one participant, the premature death of his Father and his need to take on community responsibilities ended his education; ‘everything went downhill…so I just left the school…have to stay home and help my old lady’ (ID1). For others, the education system was incompatible with their everyday lives; ‘You work in the bush, ran away from school [to] swim at our swimming hole’ (ID4). Another experienced desolation and longing for home after being sent to school far from his community, and subsequently ceased studying.
Unemployment
Long-term unemployment was almost universal. Female participants in particular reported scant employment opportunities. Male participants reported most employment opportunities and long-term work experience had been with itinerant labouring or community work programmes. Few reported skills or qualifications. Male participants often relocated for short-term employment such as fruit picking, fishing or mining, typically residing with friends and family. Short-term, itinerant arrangements contributed to homelessness when wages ceased, family relationships broke down, and people lacked the means to re-establish themselves. Those trying to engage with skills training expressed confusion about training agencies and systems, and were frustrated by the lack of post-training employment opportunities. For others, the training was ill-suited to their needs or capabilities. As one participant explained, ‘see, I tried to do training, you know, but it didn’t work and I don’t really know bricklaying and that’ (ID4).
Imprisonment
Stealing, drug-related and/or violent crime and imprisonment were commonly reported by males; ‘I punched my brother and then I killed him’ (ID06). Multiple periods of incarceration in youth and adult detention were experienced by some participants. Of these, many ‘cycled’ between prison and homeless shelters. Juvenile crime was described as ‘all of them stupid stuff’ (ID07), and ‘normal teenage things’ (ID09) by two younger male participants. One participant explained his imprisonment and that of his brothers was a ‘normal’ family event, and in some cases young males described their incarceration as a way to be with young relatives.
Poverty
Some male participants reported episodic high earnings from playing sport, mining and drug dealing. Women did not report similar experiences. At the time of interviews, economic hardship was generalised, and participants were reliant on government payments. Several males reported having large debts due to compounding unpaid fines and child support. It was difficult to imagine how these debts could be addressed, and often the system seemed to exacerbate the situation. For example, one participant with significant fine debt had lost his licence. He could not afford to regain his licence and was unable to seek work that would enable him to repay his debt. In the face of this situation, he queried whether he could serve prison time in lieu of his fines:
I would like to get license back… we try to tell judge, ‘Can we do time for it so we can finish it up?’ ‘No.’…At $20 a month it’s gonna take me 50 years till I finish my ten grand to pay it off. It just piling up, piling up. (ID4)
Typical of others, this participant’s financial predicament appeared intractable, and support was unavailable.
Social exclusion
Participants appeared to be excluded from the mainstream social milieu, existing on the periphery of mainstream systems. Results showed that many participants experienced a divide between ‘white man’s’ culture and their own, and this was seen to disadvantage people various ways. A lack of understanding between cultures was evident, as exemplified by the following comment:
The white man system is something. But we don’t know. Like, we don’t know really proper. But our culture, our respect, it no that matter…also like, you have to adapt to that lifestyle…like…technology and everything. (ID1)
Another participant also spoke to this divide from the perspective of moving into ‘a white society way of life’ (ID4) which was experienced as incongruent with his earlier experiences. Many struggled adapting to mainstream systems which fail to respect Indigenous ways. Participants were disadvantaged through this lack of continuity with mainstream systems throughout their lives when they were not able to understand, and were not understood by broader society.
Theme 4: Hope and disempowerment
Despite long-term homelessness and ongoing hardship, many participants expressed hopes and aspirations for the future. Some spoke of their determination to make life changes. After years of separation and often with scant knowledge of where their children were living, mothers and fathers expressed a desire to reunite with their children. Others who had long-standing substance misuse problems talked about stopping, others of leaving violent partners.
Well, I just wanna just get myself a flat and do all them courses what’s coming up for me and that, and maybe get a job then work. (ID4)
I have to get myself – get myself out of this lifestyle and try to find a new way of changing my life and make a better life for the future here… A place where I can call home. (ID1)
For some participants, the homeless shelter was seen as a means to an end; a stepping stone from park living to permanent housing. For others, it constituted a break from family, or a way to break bad habits, save some money, or rehabilitate and think about a better life. However, the same people described an ongoing inability to effect or maintain change in their lives and a lack of autonomy and self-determination. For example, many spoke of having a place of their own and yet simultaneously appeared resigned to a life of homelessness. Disempowerment appeared to arise from a confluence of factors including trauma and disadvantage, an absence of opportunity and resources, alcoholism, addiction, mental illness and NCD, social marginalisation and exclusion, and a sense of futility and mistrust of mainstream systems.
Discussion
This qualitative study reveals the myriad difficulties faced by homeless Aboriginal and Torres Strait Islander peoples with NCD. Participants were typically managing multiple co-occurring problems, and disability was typically unrecognised, normalised, or of low priority. Issues of daily living including sustenance, pain relief, personal safety, accommodation, and obtaining the basics of personal identification took precedence. Results point to the complex disablement of participants wherein complex health needs and personal circumstances interact with intergeneration trauma, disempowerment, and disadvantage (Fig. 1).
Complex Disablement amongst homeless Aboriginal and Torres Strait Islander Peoples with neurocognitive disability.
These results underline the need for policy and service reforms that include better understanding of, and culturally safe responses to, the themes identified in this study including (i) better understanding of the extent and nature of NCD; (ii) culturally informed and culturally safe service provision; (iii) intersectoral collaboration; and (iv) recognition of the impact of trauma and marginalisation.
Better understanding of the extent and nature of NCD
Amongst participants we found co-existing acute and chronic ill-health, mental illness, substance misuse and involvement with the criminal justice system, often across the life span. Participants are further burdened with disadvantage across a range of socioeconomic domains as well as intergenerational trauma, disadvantage and marginalisation. Homeless services typically struggle to effectively respond to people with NCD. NCD can be misunderstood, confused with mental illness, or missed altogether by intake staff, resulting in inappropriate services and unmet needs (Backer & Howard, Reference Backer and Howard2007; Gonzalez & McLoughlin, Reference Gonzalez and McLoughlin2014).
Neurocognitive impairment within Aboriginal and Torres Strait Islander people generally, and those who are homeless, has received limited attention. Prevalence has not been accurately established but appears high (Cairney et al., Reference Cairney, Clough, Jaragba and Maruff2007; Henderson & Broe, Reference Henderson and Broe2010; Li et al., Reference Li, Guthridge, Aratchige, Lowe, Wang, Zhao and Krause2014). There is a dearth of qualitative or quantitative data available to inform policy and practice (Avery, Reference Avery2016; Biddle, Yap, & Grey, Reference Biddle, Yap and Gray2013; Townsend et al., Reference Townsend, McIntyre, Lakhani, Wright, White, Bishara and Cullen2018). There is a need to address the limited body of evidence about the prevalence and nature of NCD amongst this group; the bi-directional causality between homelessness and NCD (Spence et al., Reference Spence, Stevens and Parks2004), and the lack of effective strategies to meet the needs of this group.
Culturally informed and culturally safe service provision
Results of the current study suggest that culturally safe and appropriate services were unavailable to participants. Disengagement and mistrust of mainstream services was highlighted, and acted as a strong deterrent to people seeking treatment and support. Underutilisation of mainstream services by Indigenous peoples is a well-documented human rights issue, and relates to complex historical factors (Meekosha, Reference Meekosha2011; Townsend et al., Reference Townsend, McIntyre, Lakhani, Wright, White, Bishara and Cullen2018). Differing concepts of disability, culturally insensitive assessments, negative historical experiences, and ongoing racism and discrimination contribute to the underutilisation of mainstream services by Aboriginal and Torres Strait Islander Peoples with disability (Ariotti, Reference Ariotti1999, Gilroy, Donelly, Colmar, & Parmenter, Reference Gilroy, Donelly, Colmar and Parmenter2016, Hollinsworth, Reference Hollinsworth2013). The unique and nuanced nature of homelessness amongst Aboriginal and Torres Strait Islander people has been oversimplified, and their needs have been misunderstood, minimally serviced, or overlooked entirely (Bailie & Wayte, Reference Bailie and Wayte2006; Memmott, Birdsall-Jones, & Greenop, Reference Memmott, Birdsall-Jones and Greenop2012; Parsell, Reference Parsell2010). Individuals and the services who seek to address the needs of this group report they are unable to identify NCD. Services are confronted with a complex web of disablement and extreme disadvantage for which they have limited resources to adequately respond. Service provision must address the impact of stigma and discrimination, and perceptions that services are often unhelpful and unwelcoming. Service providers must be guided by best practice principles that are informed by Elders and other Aboriginal and Torres Strait Islander Peoples. These principles must include culturally safe services that prioritise family and community inclusion and privilege Indigenous people’s ways of knowing and doing (Martin & Miraboopa, Reference Martin and Mirraboopa2003). Evidence to guide culturally safe service provision is limited, and there can be no ‘one size fits all’ approach, as strengths, needs, and local contexts vary widely across communities. Access to skilled Indigenous workers, community-centred approaches, cultural training for all workers, community understanding and involvement, and local problem solving have been suggested as important aspects of cultural safety for Indigenous people with a disability (Gilroy, Dew, Lincoln, & Hines, Reference Gilroy, Dew, Lincoln and Hines2017, Gilroy et al. Reference Gilroy, Donelly, Colmar and Parmenter2016).
Intersectoral collaboration
Results indicated that participants were collectively marginalised from mainstream society and existed on the periphery of mainstream systems. Housing, welfare, and other support systems were inaccessible to participants, and systemic barriers created further disadvantage. This study highlights the necessity for cooperative involvement and collaborative planning and service delivery from multiple sectors (including housing, disability, mental health and alcohol and drugs, criminal justice, and youth and family services), which address the heterogeneity of people and their needs. Coordination and collaboration between homeless, health and other services and the development of ‘communities of practice’ (Soubhi et al., Reference Soubhi, Bayliss, Fortin, Hudon, van den Akker, Thivierge and Fleiszer2010) are vital to ensure holistic service provision which addresses the multiple and complex needs of this cohort (Wood et al., Reference Wood, Wood, Vallesi, Stafford, Davies and Cumming2019).
Recognition of the impact of trauma and marginalisation
The lasting effect of trauma in childhood across multiple life domains has been documented (AIHW, 2018). The experience of NCD amongst Aboriginal and Torres Strait Islander people who are homeless can neither be understood nor addressed without recognition that NCD is impacted by individual and intergenerational trauma and loss. It is imperative that a ‘trauma lens’ be applied both in the crafting and implementation of policy and services. This will include recognition of the significance of intergenerational violence and trauma exposure. The cohort revealed experiences of childhood trauma and neglect, family loss and dislocation, and ongoing exposure to violence. Participants manifested many of the features associated with PTSD, and complex PTSD (Karatzias et al., Reference Karatzias, Cloitre, Maercker, Kazlauskas, Shevlin, Hyland and Brewin2018) including mental illness; poor executive function; unmodulated aggression; relationship difficulties; disrupted attachment; poor health; self-destructive behaviours; and feelings of terror, worthlessness, and helplessness (Atkinson, Reference Atkinson2013; D’Andrea, Ford, Stolbach, Spinazzola, & van der Kolk, Reference D’Andrea, Ford, Stolbach, Spinazzola and van der Kolk2012; van der Kolk, Reference van der Kolk, Kirmayer, Lemelson and Barad2007). While more research is needed to better understand trauma-informed practices for Aboriginal and Torres Strait Islander Peoples, models of service provision based on social and emotional wellbeing frameworks are desirable. Responses should be informed by Aboriginal and Torres Strait Islander Peoples, be responsive to individual and community differences, and include service provider understanding of trauma and its impact on individuals, families and communities (Atkinson, Reference Atkinson2013).
Equitable policy and service development also requires an understanding that individual trauma is situated in an historical context. This helps to address the complex interplay of individual and social factors, and directs attention ‘to the root causes of people’s health and social issues’ (Browne et al., Reference Browne, Varcoe, Lavoie, Smye, Wong, Krause and Fridkin2016. p. 3). Treatment therefore emphasises ‘the traumatic effects of historical and ongoing violence’ (p. 5), rather than the traumatic histories of individuals. The components of trauma- and violence-informed care (TVIC) suggested are (a) recognise the intersecting health effects of structural and individual violence, and other forms of inequity; (b) understand people’s health and social issues in context; and (c) work to reduce re-traumatisation (Browne et al., Reference Browne, Varcoe, Lavoie, Smye, Wong, Krause and Fridkin2016).
Conclusion
The impact of disability on ‘journeys into homelessness and the capacity to move out of homelessness’ (Wood et al., Reference Wood, Valessi, Kragt, Flatau, Wood, Gazey and Lester2017, p. 12) cannot be overstated. The current study explored the experiences of a cohort of Aboriginal and Torres Strait Islander adults with NCD residing in a homeless shelter in regional Queensland. Results indicated high levels of complex disablement, socioeconomic disadvantage and complex individual and collective trauma spanning generations. Participants were further disabled by services which did not match their needs. The Convention on the Rights of Persons with Disabilities establishes the rights of all people who have disabilities to accessible, appropriate, evidence-based services that enable them to achieve personal goals and to enjoy a quality of life equal to that of people who do not have a disability (United Nations, 2006). This paper emphasises the need for recognition and understanding of the effects of a composite interplay of complex NCD, and long-term trauma and marginalisation amongst homeless Indigenous people, and the need for evidence-based policy and services which address these complexities in culturally safe and informed ways. Crucially, unless the extent and nature of NCD, and the issues surrounding culturally safe policy, service design and engagement are addressed with and by Aboriginal and Torres Strait Islander peoples (including those who experience complex disablement), the rights and needs of marginalised Aboriginal and Torres Strait Islander people will continue to be denied.
Limitations and Future Research
The study represents a snapshot of a cohort and may not be representative of other contexts nor other geographical locations. It was beyond the scope of this study to compare the experiences of homelessness for Aboriginal and Torres Strait Islander people who do not have NCD, and this is an area for future research. Partly due to the small numbers of Torres Strait Islander participants, the authors did not specifically analyse variations between Aboriginal and Torres Strait Islander participants. Future research should examine these factors in more depth.
Acknowledgements
The authors acknowledge the participants who provided their stories and consented for the authors to tell the stories, so that others may understand. We acknowledge and appreciate the shelter staff and management for supporting this work, and the important role Delina Andrews has played as project manager and cultural adviser. We also acknowledge the role carried out by Alan White, Specialist Disability Services Assessment and Outreach Team (SDSAOT) Department of Communities, Disability Services, and Seniors.
Financial support
This work was funded by an anonymous philanthropic Trust which has had no involvement in the conceptualisation or writing of this article, nor in the decision to submit this article for publication.
Conflicts of interest
There is no actual or potential conflict of interest that could inappropriately influence, or be perceived to influence, this work.
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. Ethical approval was obtained (protocol HREC/14/QCH/122-941).
Appendix A: Key Features of the Yarning Sessions
Respecting Indigenous ways and spirituality, and demonstrating respect;
Allowing people to tell their story in relation to past, present, and future;
Flexible timeframes: Circular not linear, meandering, and not always following convention;
Recognition of the opportunity for all parties to yarn and learn, and exchange knowledge and experiences;
Use of silence and pacing as appropriate to the participant;
Investment of sufficient time for the person to settle, tell their story in their own words, and in their own way. This included refreshments, cigarette breaks, and/or a second yarning session;
Recognition that complex issues can mask and/or exacerbate neurocognitive disability, with the researchers noting and discussing these issues following the yarning session;
Recognition of the importance of non-verbals, with the researchers noting and discussing the non-verbals used following the yarning session;
Recognition and respect for diverse ways of knowing, thinking, and doing (e.g. visual; the use of stories);
Recognition of the importance of family and the collective in the yarn;
Recognition of the heterogeneity of Indigenous peoples (e.g., researchers to be alert to the individual features of each person’s yarn as well as patterns that may be emerging); and
Recognition of the history of disadvantage and mistrust, and how this might impact on the person’s response to those participating in the yarn.
Appendix B: Organisation of Clusters Based on the Study Research Questions
