Applications of the R.A.I.S.E. Assessment Framework to Support the Process of Assessment in Primary Progressive Aphasia.

PURPOSE: To establish the extent to which person-centered processes are integrated in assessment procedures, the Relationship, Assessment, Inclusion, Support, Evolve (R.A.I.S.E.) Assessment framework was used to evaluate measures that are typically used when assessing people living with primary progressive aphasia (PPA). METHOD: Forty-five assessment tools were evaluated through the lens of the five R.A.I.S.E. principles: building the client-clinician Relationship, Assessment choices, Including the client and care partners, providing Support, and Evolving procedures to match client capability and progression. The principles were operationalized as questions for raters to evaluate whether a measure met this aspect of the R.A.I.S.E. Assessment framework. RESULTS: Ten measures commonly used in the assessment of people living with PPA met all R.A.I.S.E. principles. These measures centered upon the elicitation of naturalistic discourse, conversation, client self-report, and clinician ratings. Thirteen measures did not meet any of the criteria, and represented standardized evaluation procedures do not provide the opportunity to connect to the client, elicit or provide feedback or support, nor to adapt in response to need or performance. CONCLUSIONS: Whether using standardized or informal assessment tools, a relational and qualitative approach to providing assessment is paramount to promote client success and therapeutic engagement. We provide guidance through the R.A.I.S.E. framework on practices to cultivate person-centered processes of assessment in the care of people living with PPA.

The kitchen assessment: an interactional analysis of assessment and feedback between an occupational therapist and a patient with aphasia post stroke.

PURPOSE: After stroke, patients undergo frequent multidisciplinary assessments. Little is known about patients' experiences of being assessed and the impact of assessment interactions and feedback for ongoing engagement in rehabilitation. This research aims to stimulate reflection on clinical interactions, even during routine clinical assessments, and the provision of assessment feedback. MATERIALS AND METHODS: This study involved a detailed analysis of an authentic kitchen assessment interaction between an occupational therapist and a patient with aphasia following stroke. It used a speech function analysis based on systemic functional linguistics resulting in both dynamic and synoptic data, and a consideration of interactive framing, to explore assessment explanation and feedback. RESULTS: The analysis revealed the clinician's interactive dominance in terms of number and type of moves, and misalignment of interactional framing at different points in the exchange. The session appeared to result in patient disengagement related both to the clinician's misjudged response to the patient's aphasia, and the context of assessment itself, characterised by reliance on question-and-answer exchanges, and a tendency to highlight deficit. CONCLUSIONS: Assessment sessions may be emotionally challenging for patients after stroke and feedback may be interpreted as bad news. Sensitive communication is required to support psychological wellbeing and engagement in rehabilitation.IMPLICATIONS FOR REHABILITATIONAfter stroke, patients are assessed by the multidisciplinary team to inform intervention and discharge planning.Little is known about the feedback patients receive or their views of this feedback, including when it is perceived as bad news.The presence of aphasia can complicate how assessments are conducted and how feedback is delivered and received.Greater awareness is needed of how feedback following assessment might impact patients' psychological wellbeing and engagement in rehabilitation.

Comprehensive quality assessment for aphasia rehabilitation after stroke: protocol for a multicentre, mixed-methods study.

INTRODUCTION: People with aphasia following stroke experience disproportionally poor outcomes, yet there is no comprehensive approach to measuring the quality of aphasia services. The Meaningful Evaluation of Aphasia SeRvicES (MEASuRES) minimum dataset was developed in partnership with people with lived experience of aphasia, clinicians and researchers to address this gap. It comprises sociodemographic characteristics, quality indicators, treatment descriptors and outcome measurement instruments. We present a protocol to pilot the MEASuRES minimum dataset in clinical practice, describe the factors that hinder or support implementation and determine meaningful thresholds of clinical change for core outcome measurement instruments. METHODS AND ANALYSIS: This research aims to deliver a comprehensive quality assessment toolkit for poststroke aphasia services in four studies. A multicentre pilot study (study 1) will test the administration of the MEASuRES minimum dataset within five Australian health services. An embedded mixed-methods process evaluation (study 2) will evaluate the performance of the minimum dataset and explore its clinical applicability. A consensus study (study 3) will establish consumer-informed thresholds of meaningful change on core aphasia outcome constructs, which will then be used to establish minimal important change values for corresponding core outcome measurement instruments (study 4). ETHICS AND DISSEMINATION: Studies 1 and 2 have been registered with the Australian and New Zealand Clinical Trial Registry (ACTRN12623001313628). Ethics approval has been obtained from the Royal Brisbane and Women's Hospital (HREC/2023/MNHB/95293) and The University of Queensland (2022/HE001946 and 2023/HE001175). Study findings will be disseminated through peer-reviewed publications, conference presentations and engagement with relevant stakeholders including healthcare providers, policy-makers, stroke and rehabilitation audit and clinical quality registry custodians, consumer support organisations, and individuals with aphasia and their families.

"Please Don't Assess Him to Destruction": The R.A.I.S.E. Assessment Framework for Primary Progressive Aphasia.

PURPOSE: Speech-language pathologists (SLPs) assess people with primary progressive aphasia (PPA) through measurements of speech, language, communication, and well-being, with the aims of identifying challenges and strengths, monitoring change, and informing treatment directions and supports. The purpose of this clinical focus article is to highlight the necessity for person-centered assessment specific to PPA and to conceptualize a framework that acknowledges the multifaceted nature of assessment for this population. In this framework, the unique challenges posed by a diagnosis of PPA are addressed with the aim to provide practical guidance for clinicians and to support reflection on current practices. METHOD: In clinical and research practice, assessment of people with PPA requires an ever-evolving approach that is centered on the client. In this clinical focus article, a discussion-based consensus process was used to synthesize authentic longitudinal experiences of people with PPA to explore assessment approaches, tools, and philosophies. RESULTS: This analysis of person-centered assessment identifies seven essential components of assessment in PPA that set the foundation for the five steps of the R.A.I.S.E. Assessment framework. These components each contribute to a clear definition of assessment that reveals clients' competencies with a strengths-based focus; prioritizes the reciprocity of benefits; promotes dynamic assessment; and recognizes the complexity, evolution of assessment over time, and advocacy. CONCLUSIONS: This clinical focus article takes a novel look at assessment in PPA by stepping away from assessment practices that focus on revealing deficits and decline and, instead, provides practical recommendations through the conceptualization of a PPA-specific assessment framework. The R.A.I.S.E. Assessment framework is grounded in principles of uplifting clients through person-centered assessment, keeps pace with best practice in PPA intervention, and contributes to a supportive experience for clients and families in the face of a progressive diagnosis over time.

Communication services for First Nations peoples after stroke and traumatic brain injury: Alignment of Sustainable Development Goals 3, 16 and 17.

PURPOSE: Colonisation and continuing discrimination have significantly and negatively impacted the physical, social and emotional wellbeing of First Nations peoples globally. In Australia, Aboriginal cultures thrive despite ongoing barriers to health care. This paper describes challenges and new initiatives for Australian Aboriginal people with acquired communication disability after brain injury and their alignment with the global aims forming the Sustainable Development Goals. RESULT: Research undertaken by an Aboriginal and non-Aboriginal multidisciplinary team over a decade in Western Australia identified and responded to mismatches between community needs and services. Initiatives described include the Missing Voices, Healing Right Way, Brain Injury Yarning Circles and Wangi/Yarning Together projects. Recommendations implemented related to (a) greater incorporation of Aboriginal cultural protocols and values within services, (b) more culturally secure assessment and treatment tools, (c) support after hospital discharge, (d) Aboriginal health worker involvement in support. Implementation includes cultural training of hospital staff, trialling new assessment and treatment methods, and establishing community-based Aboriginal Brain Injury Coordinator positions and relevant peer support groups. CONCLUSION: Culturally secure brain injury rehabilitation in Australia is in its infancy. Our initiatives challenge assumptions about worldviews and established Western biomedical models of healthcare through incorporating Indigenous methodologies and leadership, and community-driven service delivery. This commentary paper focuses on Sustainable Development Goals 3, 16 and 17.

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.

INTRODUCTION: Despite higher incidence of brain injury among Aboriginal compared with non-Aboriginal Australians, suboptimal engagement exists between rehabilitation services and Aboriginal brain injury survivors. Aboriginal patients often feel culturally insecure in hospital and navigation of services post discharge is complex. Health professionals report feeling ill-equipped working with Aboriginal patients. This study will test the impact of a research-informed culturally secure intervention model for Aboriginal people with brain injury. METHODS AND ANALYSIS: Design: Stepped wedge cluster randomised control trial design; intervention sequentially introduced at four pairs of healthcare sites across Western Australia at 26-week intervals.Recruitment: Aboriginal participants aged ≥18 years within 4 weeks of an acute stroke or traumatic brain injury.Intervention: (1) Cultural security training for hospital staff and (2) local, trial-specific, Aboriginal Brain Injury Coordinators supporting participants.Primary outcome: Quality-of-life using EuroQOL-5D-3L (European Quality of Life scale, five dimensions, three severity levels) Visual Analogue Scale score at 26 weeks post injury. Recruitment of 312 participants is estimated to detect a difference of 15 points with 80% power at the 5% significance level. A linear mixed model will be used to assess the between-condition difference.Secondary outcome measures: Modified Rankin Scale, Functional Independence Measure, Modified Caregiver Strain Index, Hospital Anxiety and Depression Scale at 12 and 26 weeks post injury, rehabilitation occasions of service received, hospital compliance with minimum care processes by 26 weeks post injury, acceptability of Intervention Package, feasibility of Aboriginal Brain Injury Coordinator role.Evaluations: An economic evaluation will determine the potential cost-effectiveness of the intervention. Process evaluation will document fidelity to study processes and capture changing contexts including barriers to intervention implementation and acceptability/feasibility of the intervention through participant questionnaires at 12 and 26 weeks. ETHICS AND DISSEMINATION: The study has approvals from Aboriginal, university and health services human research ethics committees. Findings will be disseminated through stakeholder reports, participant workshops, peer-reviewed journal articles and conference papers. TRIAL REGISTRATION NUMBER: ACTRN12618000139279.

Creating a Theoretical Framework to Underpin Discourse Assessment and Intervention in Aphasia.

Discourse (a unit of language longer than a single sentence) is fundamental to everyday communication. People with aphasia (a language impairment occurring most frequently after stroke, or other brain damage) have communication difficulties which lead to less complete, less coherent, and less complex discourse. Although there are multiple reviews of discourse assessment and an emerging evidence base for discourse intervention, there is no unified theoretical framework to underpin this research. Instead, disparate theories are recruited to explain different aspects of discourse impairment, or symptoms are reported without a hypothesis about the cause. What is needed is a theoretical framework that would clarify the specific linguistic skills that create completeness, coherence, and complexity (i.e., richness) in discourse, and illuminate both the processes involved in discourse production and the reasons for breakdown. This paper reports a review and synthesis of the theoretical literature relevant to spoken discourse in aphasia discourse, and we propose a novel theoretical framework which unites these disparate sources. This framework is currently being tested as the foundation for Linguistic Underpinnings of Narrative in Aphasia (LUNA) treatment research. In this paper, we outline the novel framework and exemplify how it might be used to guide clinical practice and research. Future collaborative research is needed to develop this framework into a processing model for spoken discourse.

Indigenous research methodologies: decolonizing the Australian sports sciences.

To design a questionnaire that would determine an Indigenous individual's perceptions of the barriers and motivators to aerobic and anabolic exercise with a series of questions designed to elicit the factors that impact uptake and retention of regular physical activity. For this purpose, a questionnaire was designed to capture information relating to motivators and barriers, traditional physical activities, preferred exercise environments, exercise goals and levels of commitment to physical activity. This article does not report the results of the questionnaire itself but the preparation that was required in order to develop it. Indigenous standpoint theory. Participatory Action Research. A series of consultation meetings were arranged between the first author, a Noongar Aboriginal researcher, with a range of people from the same Noongar community as the author to discuss priorities and develop questions. The drafted questionnaire was shaped with continuous Noongar community feedback to ensure the language, length and appropriateness of questions. Questionnaire reliability was assessed using interclass correlation. Most questions had excellent internal consistency. A consensus was reached on the utility of the questionnaire. The personal contacts of the first author and nature of community involvement in the development of this questionnaire were helpful in assuring that it would be an acceptable tool for the Noongar community. The piloting of the questionnaire was also important in confirming its community acceptability. This article provides a model and suggestions for researching physical activity and exercise in a culturally safe manner.

The Impact of Stuttering on Development of Self-Identity, Relationships, and Quality of Life in Women Who Stutter.

Purpose: The experiences of women who stutter have been underresearched. Clinicians have little guidance from the research literature on issues specific to women who stutter and are likely to have less clinical contact with this group than with men who stutter because of the higher prevalence of stuttering in men. This study explored the experiences of a small group of women who stutter with a particular focus on what the main current issues are and how gender may have influenced experiences with stuttering. Method: This qualitative study involved recruitment of 9 women who stutter (aged 35-80 years) through a support network of people who stutter in Western Australia. All the women had received some form of speech therapy for stuttering, and they came from diverse cultural backgrounds. Individual, semistructured interviews were conducted, recorded, and transcribed verbatim. Data were managed with NVivo 10, and thematic analysis was used to identify recurring themes across the data. Data were coded independently by the researchers and refined through group discussion. Participants also completed the Overall Assessment of the Speaker's Experience of Stuttering. Results: A core theme of "gendered sense of self in society" emerged from the data. This related to 3 broad themes: perceptions of self that were primarily negative, the impact of stuttering on relationships and social connection with others (relationships with family, peers, colleagues, and intimate partners), and the management of stuttering (internal coping, motivations, and experiences with external support). Conclusions: Stuttering has a pervasive impact on all aspects of women's lives and affects how they view themselves, their relationships, their career potential, and their perceptions of how others view them in society. The women interviewed in this study often had negative self-perceptions and felt that their quality of life had been impacted by their stuttering. However, the women's stories and experiences of stuttering were shaped by a broader context of perceived sociocultural expectations of females in society. Strong verbal communication was highlighted as a crucial factor in developing identity and forming relationships. This study highlights the need to be aware of the experiences of, and issues facing, women who stutter for clinicians to be more equipped, focused, and successful in their stuttering interventions for women.

From individual to global: Human rights and aphasia.

This commentary marks the 70th anniversary of the Universal Declaration of Human Rights by examining Article 19 and its application to people with aphasia. This group of people still face lack of access, stigmatisation, exclusion, disadvantage and social withdrawal as well as poor public awareness of aphasia and inadequate prioritisation of support and resources. Nevertheless, a range of creative initiatives at individual, healthcare, local community, national and global levels have helped to connect and empower people with aphasia. Such initiatives include provision of accessible information in a range of media, inclusion of people with aphasia in decision-making and as research partners, awareness raising campaigns to counter attitudinal barriers, organisation of community aphasia groups, development of guidelines for best practice, national aphasia associations and international collaborations such as Aphasia United. While ongoing work and resourcing is needed to expand these efforts further, they have helped people with aphasia to be heard and to protect their sense of dignity which underlies human rights. A human rights approach can unite, politicise and refocus these efforts, and highlight the essential role of communication in fostering a better quality of life.

Development of the Aboriginal Communication Assessment After Brain Injury (ACAABI): A screening tool for identifying acquired communication disorders in Aboriginal Australians.

PURPOSE: Acquired communication disorders (ACD), following stroke and traumatic brain injury, may not be correctly identified in Aboriginal Australians due to a lack of linguistically and culturally appropriate assessment tools. Within this paper we explore key issues that were considered in the development of the Aboriginal Communication Assessment After Brain Injury (ACAABI) - a screening tool designed to assess the presence of ACD in Aboriginal populations. METHOD: A literature review and consultation with key stakeholders were undertaken to explore directions needed to develop a new tool, based on existing tools and recommendations for future developments. RESULT: The literature searches revealed no existing screening tool for ACD in these populations, but identified tools in the areas of cognition and social-emotional wellbeing. Articles retrieved described details of the content and style of these tools, with recommendations for the development and administration of a new tool. The findings from the interview and focus group views were consistent with the approach recommended in the literature. CONCLUSIONS: There is a need for a screening tool for ACD to be developed but any tool must be informed by knowledge of Aboriginal language, culture and community input in order to be acceptable and valid.

Speech-language pathology practices with Indigenous Australians with acquired communication disorders.

PURPOSE: Little is known about the needs of Indigenous Australian adults with acquired communication disorders (ACD) following stroke or brain injury and how these needs are met by speech-language pathology (SLP) services. In order for the profession to respond to the challenges of providing culturally appropriate, well-tailored and accessible services, more information on current practice and SLPs' concerns and attitudes is required. METHOD: This paper reports on a national survey with completed responses from 112 SLPs, who worked with adult neurological populations, about their levels of contact with Indigenous clients, cultural competency training and potential sources of support. RESULT. Of the total respondents, 63 SLPs reported clinical contact with Indigenous clients and :they also answered questions on their assessment, intervention and discharge practices; liaison with family; and involvement with Aboriginal Health Professionals and interpreters. This group reported insufficient knowledge about Indigenous culture, lack of support and lower levels of confidence overall in working with these clients as compared to non-Indigenous clients. They wanted more flexible services for their Indigenous clients, good access to interpreters and culturally appropriate assessments and treatments delivered in culturally appropriate settings. CONCLUSION: This research provides a useful starting point towards understanding SLPs' perspectives and practice at a national level.

Living with aphasia: three Indigenous Australian stories.

The incidence of cardiovascular disorders and stroke in Australian Aboriginal communities is more than twice as high as non-Indigenous Australians. Approximately 30% of people who survive stroke are left with some level of aphasia, and yet Indigenous Australians appear to be infrequent users of speech-language pathology services, and there is virtually no research literature about the experiences of aphasia for this group of people. This paper presents the stories of living with aphasia for three Indigenous Australian men living in Perth, Western Australia. Their narratives were collected by an Indigenous researcher through in-depth, supported interviews, and were explored using both within-case and cross-case analyses for common and recurring themes. It is argued that there is value for speech-language pathologists, and other health professionals, to be aware of the broad experiences of living with aphasia for Indigenous Australians because their stories are rarely heard and because, as with people with aphasia generally, they are at risk of social isolation and tend to lack visibility in the community. This study explores the key issues which emerge for these three men and highlights the need for further research in this area.

"Well it has to be language-related": speech-language pathologists' goals for people with aphasia and their families.

Goal-setting is considered an essential part of rehabilitation practice and integral to person-centredness. However, people with aphasia are not always satisfied with goal-setting, and speech-language pathologists are concerned about the appropriateness of therapy. Furthermore, family members are often excluded from goal-setting, despite the impact aphasia has on them. The actual goals set by clinicians for clients with aphasia and their family members have not yet been investigated. This study aimed to examine the goals that clinicians set for their clients with aphasia and their family members. Data from in-depth interviews with 34 speech-language pathologists describing 84 goal-setting experiences with people with aphasia were coded into superordinate goals for both groups. Clinicians expressed a wide range of goals for people with aphasia and their family members, relating to communication, coping and participation factors, and education. In addition, evaluation was considered a goal for the clients. There were clients for whom no goals were set, particularly for family members, due to a lack of/limited contact. The goals described broadly addressed all aspects of the International Classification of Functioning, Disability and Health (ICF) and reflected the use of both functional and impairment-based therapeutic approaches; they also emphasize the importance of providing goal-setting options for the family members of these clients.