Study Protocol:Missing Voices– Communication Difficulties after Stroke and Traumatic Brain Injury in Aboriginal Australians

Abstract

Background: Aboriginal and Torres Strait Islander Australians experience stroke and traumatic brain injury (TBI) with much greater frequency than non-Aboriginal Australians. Acquired communication disorders (ACD) can result from these conditions and can significantly impact everyday life. Yet few Aboriginal people access rehabilitation services and little is known about Aboriginal peoples’ experiences of ACD. This paper describes the protocol surrounding a study that aims to explore the extent and impact of ACD in Western Australian Aboriginal populations following stroke or TBI and develop a culturally appropriate screening tool for ACD and accessible and culturally appropriate service delivery models. Method/Design: The 3-year, mixed methods study is being conducted in metropolitan Perth and five regional centres in Western Australia. Situated within an Aboriginal research framework, methods include an analysis of linked routine hospital admission data and retrospective file audits, development of a screening tool for ACD, interviews with people with ACD, their families, and health professionals, and drafting of alternative service delivery models. Discussion: This study will address the extent of ACD in Aboriginal populations and document challenges for Aboriginal people in accessing speech pathology services. Documenting the burden and impact of ACD within a culturally secure framework is a forerunner to developing better ways to address the problems faced by Aboriginal people with ACD and their families. This will in turn increase the likelihood that Aboriginal people with ACD will be diagnosed and referred to professional support to improve their communication, quality of life and functioning within the family and community context

“You felt like a prisoner in your own self, trapped”: the experiences of Aboriginal people with acquired communication disorders

“…Guided by findings from our pilot research which encompassed the stories of Aboriginal people with brain injury and their families from a range of demographic and geographical contexts, and with the support of Aboriginal Community Controlled Health Services throughout Western Australia (WA), the current findings formed part of a larger mixed methods study, Missing Voices [25]. Missing Voices investigated the extent and impact of brain injury on Aboriginal Australians using analysis of linked data of hospitalisations and mortality, file audits and interviews with key stakeholders including Aboriginal people who have experienced a brain injury, their families, and health service providers.…”

“…This comprehensive approach aimed to inform development of appropriate, culturally secure adult brain injury rehabilitation service delivery models. In this context, cultural security refers to ensuring that Aboriginal cultural values, world views and ways of working are incorporated at each level and stage of the rehabilitation service and that services will not compromise the legitimate cultural rights, values and expectations of Aboriginal people [25].…”

Missing voices: Profile and extent of acquired communication disorders in Aboriginal and non-Aboriginal adult stroke survivors in Western Australia using linked administrative records

“…This study aims to estimate the extent and profile of ACD in Aboriginal and non-Aboriginal adult stroke survivors in Western Australia (WA) and investigate potential disparities in receiving in-hospital speech pathology services among survivors with ACD. It forms part of a mixed methods research project 5 which aims to determine the impact of ACD on Aboriginal Australians.…”

Indigenous stroke care: differences, challenges and a need for change

“…Based on a chronic care model and informed by local neurological nursing care programmes, the Aboriginal Brain Injury Coordinators provide educational information regarding stroke and subsequent rehabilitation/recovery, psychological support and advocacy services, keeping patients and their families in touch with local and remote services, telehealth facilities and the latest information regarding stroke rehabilitation treatment. This study is based on the Missing Voices study – a large state‐wide study conducted in Western Australia, encompassing epidemiological and qualitative interview data surrounding Aboriginal Australians’ experience of stroke, with a particular focus on individuals with communication disorders. The Healing Right Way study encompasses stroke survivors with a range of resulting impairments and focuses on a holistic health model that extends beyond recovery of the individual's impairment.…”