‘I’ve got to row the boat on my own, more or less’: aboriginal australian experiences of traumatic brain injury

Abstract

Background:The overarching cultural context of the brain injury survivor, particularly that related to minority peoples with a history of colonisation and discrimination, has rarely been referred to in the research literature, despite profoundly influencing a person’s recovery journey in significant ways, including access to services. This study highlights issues faced by Australian Aboriginal traumatic brain injury (TBI) survivors in terms of real-life consequences of the high incidence of TBI in this population, current treatment and long-term challenges.Method:A case study approach utilised qualitative interview and file review data related to five male Aboriginal TBI survivors diagnosed with acquired communication disorders. The five TBI survivors were from diverse areas of rural and remote Western Australia, aged between 19 and 48 years at the time of injury, with a range of severity.Case Reports:Common themes included: significant long-term life changes; short-term and long-term dislocation from family and country as medical intervention and rehabilitation were undertaken away from the person’s rural/remote home; family adjustments to the TBI including permanent re-location to a metropolitan area to be with their family member in residential care; challenges related to lack of formal rehabilitation services in rural areas; poor communication channels; poor cultural security of services; and lack of consistent follow-up.Discussion and Conclusion:These case reports represent some of the first documented stories of Aboriginal Australian TBI survivors. They supplement available epidemiological data and highlight different contexts for Aboriginal people after TBI, contributing to an overall profile that is relevant for rehabilitation service planning.

Clinical profile of Aboriginal and Torres Strait Islander adults with stroke and traumatic brain injury at a regional Australian hospital: a retrospective chart audit

“…Health care needs may also differ across urban, remote and discrete Aboriginal and Torres Strait Islander communities (Queensland Health, 2010, 2014. Health professionals must recognise and acknowledge these aspects of diversity and tailor their services to ensure culturally secure practice and that the unique values, cultural needs and rights of Aboriginal and Torres Strait Islander peoples are met (Armstrong et al, 2019;Fitts et al, 2019;Hersh et al, 2019;Queensland Health, 2010, 2014Taylor & Guerin, 2014). Failure to do so may lead to patient dis-engagement in the health service, negative emotions and poorer health outcomes for Aboriginal and Torres Strait Islander peoples, particularly those who experience stroke and TBI, and subsequent acquired communication disorders (Armstrong et al, 2019;Fitts et al, 2019;Hersh et al, 2019;Katzenellenbogen et al, 2013).…”

“…The absence of any data recording languages other than English potentially demonstrates a gap in the hospital admissions process, inadequate information seeking by health professionals or health professionals' lack of knowledge and awareness regarding Indigenous Australian languages. Non-Indigenous Australian health professionals may also lack knowledge and understanding about these languages and therefore may risk misdiagnosis of the patient's language difference with a language or cognitive disorder (Armstrong et al, 2019). Another confounding factor may have been that the language was not a code selection option in the hospital data management system.…”

“…Additionally, Aboriginal patients preferred to have access to a familiar interpreter, such as a family member or known health worker (Kelly et al, 2012). Poor intercultural communication may compromise patient's health and health outcomes due to miscommunication and inappropriate information to make informed decisions, particularly those who have experienced stroke or TBI (Armstrong et al, 2019;Fitts et al, 2019;Katzenellenbogen et al, 2013;Queensland Health, 2014). Language and cultural difference between the patient and the health professional, along with culturally insensitive practices, have been identified by Australian Aboriginal and Torres Strait Islander patients as having a negative effect on their well-being and health outcomes (Armstrong et al, 2019;Aspin, Brown, Jowsey, Yen, & Leeder, 2012;Fitts et al, 2019;Hersh et al, 2019).…”

Study protocol for a prospective process evaluation of a culturally secure rehabilitation programme for Aboriginal Australians after brain injury: the Healing Right Way project

“…3 The nature of Aboriginal peoples' experiences and interactions with the health system is increasingly recognised as a major determinant of health/disability outcomes. System barriers, especially the lack of culturally secure services, [4][5][6] have been shown to impact on the accessibility of health services for Aboriginal people. [7][8][9] Cultural security is an attribute of services, where institutions and their staff have awareness of Aboriginal cultural values, practices and world views and act on this knowledge to address patient needs.…”

Healing Right Way: study protocol for a stepped wedge cluster randomised controlled trial to enhance rehabilitation services and improve quality of life in Aboriginal Australians after brain injury

“…4 Motor, communication, sensory and cognitive deficits all adversely affect long-term quality of life, including employment status and prospects, family relationships, social participation and mental health. [9][10][11][12] Ongoing engagement between Aboriginal brain injury survivors and mainstream hospital-based rehabilitation services is limited, with complex service pathways to navigate post discharge. 13 14 This results in confusion, communication breakdown and lack of support for brain injury survivors, their families and communities.…”