SOCCA: Co-Design, Cultural Adaptation and Implementation of CCD Interventions
Tracks
Room: 519
Saturday, March 22, 2025 |
2:00 PM - 3:30 PM |
Room: 519 |
Details
CME
Speaker
Prof. Leanne Togher
The University of Sydney
Session Chair: SOCCA Symposium: Co-Design, Cultural Adaptation and Implementation of CCD Interventions
Biography
Professor Leanne Togher is a full Professor and recipient of their 4th NHMRC Fellowship (currently Investigator Grant Fellow Level 3) based at The University of Sydney, Sydney, Australia. Professor Togher holds a PhD in the area of speech pathology, and is internationally recognised with more than 120 papers, 4 books and over 20 book chapters. She has attracted over AUD$38 million in external grant funding and was awarded the 2018 NHMRC Elizabeth Blackburn - Clinical Research Fellowship prize as the highest ranked female research fellow applicant in the field of Clinical Science and Medicine in the NHMRC Fellowships scheme.
Professor Togher’s communication treatments for people with brain injury and their families, carers, service providers and community agencies include TBI Express, TBI ConneCT and the Social Brain Toolkit. Professor Togher’s current research focuses on developing digital health solutions and technology, including virtual reality and online treatments to facilitate the treatment of cognitive communication disorders following acquired brain injury. She is Director of the Acquired Brain Injury Communication Lab at The University of Sydney. She is Director of the free online repository of speech pathology treatment literature, called speechBITE.
Professor Togher is Vice Chair of the International Brain Injury Association and Chair of Brain Injury Australia. They are the Director of the SOCCA SIG for IBIA. Professor Togher is Honorary Professor at City University, London, UK, Visiting Professor, Education University of Hong Kong, International Board Member, Journals Board of ASHA (USA), and Chair, Editorial Board for Brain Impairment
Prof. Laura Murray
Western University
Adaptation of the Scales of Cognitive and Communication Ability for Neurorehabilitation for the Ghanaian Context
Abstract(s)
Acquired brain injury (ABI), including stroke and traumatic brain injury, is an emerging public health challenge in Ghana, leading to significant death and disability, including cognitive-communication disorders (Adjorlolo, 2018; Donkor, 2018). These disorders impact daily activities such as work, school, and social interactions (Marshall et al., 2018). To enhance social functioning, communication, behavior, return to school/work, and overall quality of life for individuals affected by ABI, setting appropriate rehabilitation goals based on accurate cognitive-communication assessments is crucial (Santos et al., 2019). However, a major challenge in Ghana’s ABI rehabilitation sector is the absence of standardized assessment tools that are culturally and linguistically appropriate (Kankam & Murray, 2023; Tsiwah et al., 2021). This study aims to develop a culturally and linguistically appropriate assessment tool for acquired cognitive-communication disorders in Ghana. Specifically, it seeks to adapt the existing Western-standardized cognitive-communication assessment tool, the Scales of Cognitive and Communication Ability for Neurorehabilitation (SCCAN; Milman & Holland, 2012), for the Ghanaian context in both the country´s formal language, English (Adika, 2012), and a widely spoken local dialect, Twi (Tsiwah et al., 2021). The study will also evaluate the validity and reliability of the adapted SCCAN versions. Our presentation will focus on summarizing the current speech-language therapy context in Ghana (including services for ABI), describing our process for test adaptation and translation, and sharing preliminary results from Ghanaian adults with and without ABI.
Biography
Keren Kankam is a PhD candidate in the Health and Rehabilitation program (Speech and Language Science) at the University of Western Ontario, as well as a Communicative Disorders Assistant. Keren´s research focuses on examining current practices and identifying ways to improve speech and language services for individuals with acquired brain injuries in low- and middle-income African countries.
Dr. Jana Quinting
University Of Cologne
The Co-CALIBRATE Framework: An Evidence-Based Framework for the Cultural Adaptation of Brain Injury Intervention Tools with Stakeholder Engagement
Abstract(s)
Background: The translation and adaptation of healthcare resources for people with acquired brain injury (ABI) has significantly increased over recent decades, enabling cross-cultural comparisons and providing essential resources for clinical practice in multicultural and multilingual settings. While numerous guidelines exist for translating and adapting assessment tools, the literature offers limited guidance on culturally adapting interventions. Existing guidelines for adaptation of interventions are often criticized for lacking flexibility, real-world applicability, and sufficient detail in describing core processes. Additionally, current recommendations and guidelines do not adequately address the specific needs and considerations for people with cognitive and communication changes following ABI as part of the cultural adaptation process. This project will develop a comprehensive framework for translating and adapting evidence-based interventions for brain injury rehabilitation into other languages, with a focus on co-design to ensure cultural sensitivity. This new framework will enhance access to treatment for linguistically and culturally diverse populations.
Methods: The Co-CALIBRATE (Co-Designed, Cultural And Linguistic Adaptation of BRAin Injury TrEatments) framework for adapting interventions for individuals with ABI was developed through a collaborative and iterative process, involving an international team of researchers experienced in the translation and cultural adaption of brain injury rehabilitation tools and in co-designing interventions for individuals with ABI, including those with associated cognition and communication disorders. The study was conducted in two stages. Stage one focused on developing the Co-CALIBRATE Framework and involved several key phases: 1) A comprehensive literature review examining 1a) existing models and processes for translation and adaption, and 1b) co-design principles; 2) The identification and synthesis of key concepts and core processes from existing evidence-based recommendations and guidelines; and 3) Iterative development of the framework through project team discussions. In the second stage, the proposed model was then iteratively reviewed by an international expert committee (including people with lived experience of ABI) and their feedback was incorporated to inform the final version of the framework.
Results: The final version of the framework details the various phases involved in the culturally sensitive translation and adaptation of brain injury rehabilitation tools. It emphasizes the importance of stakeholder engagement and accounts for cognitive and communication impairments to ensure both cultural relevance for and acceptability while maintaining fidelity in the target population. The application of the framework processes are demonstrated in a case example of the authors’ current adaptation of ABI intervention resources.
Discussion: The Co-CALIBRATE Framework is an internationally endorsed framework that provides a foundation for future adaptation processes in ABI interventions. Its application in future cultural adaptation projects will further evaluate suitability across different diverse cultural contexts and intervention types, with possibility for further refinement to meet stakeholder needs.
Methods: The Co-CALIBRATE (Co-Designed, Cultural And Linguistic Adaptation of BRAin Injury TrEatments) framework for adapting interventions for individuals with ABI was developed through a collaborative and iterative process, involving an international team of researchers experienced in the translation and cultural adaption of brain injury rehabilitation tools and in co-designing interventions for individuals with ABI, including those with associated cognition and communication disorders. The study was conducted in two stages. Stage one focused on developing the Co-CALIBRATE Framework and involved several key phases: 1) A comprehensive literature review examining 1a) existing models and processes for translation and adaption, and 1b) co-design principles; 2) The identification and synthesis of key concepts and core processes from existing evidence-based recommendations and guidelines; and 3) Iterative development of the framework through project team discussions. In the second stage, the proposed model was then iteratively reviewed by an international expert committee (including people with lived experience of ABI) and their feedback was incorporated to inform the final version of the framework.
Results: The final version of the framework details the various phases involved in the culturally sensitive translation and adaptation of brain injury rehabilitation tools. It emphasizes the importance of stakeholder engagement and accounts for cognitive and communication impairments to ensure both cultural relevance for and acceptability while maintaining fidelity in the target population. The application of the framework processes are demonstrated in a case example of the authors’ current adaptation of ABI intervention resources.
Discussion: The Co-CALIBRATE Framework is an internationally endorsed framework that provides a foundation for future adaptation processes in ABI interventions. Its application in future cultural adaptation projects will further evaluate suitability across different diverse cultural contexts and intervention types, with possibility for further refinement to meet stakeholder needs.
Biography
Jana Quinting is a lecturer and researcher specializing in acquired language and communication disorders, with a full-time academic role at the University of Cologne. She is a certified Speech-Language Pathologist with expertise in acquired brain injury (ABI) and neurorehabilitation, particularly in the areas of social cognition and pragmatics/communication. Her current research focuses on digital health solutions, with a focus on virtual reality (VR) applications, including co-design/PPIE.
Petra Avramović is a lecturer, early career researcher, and certified practicing speech pathologist. She has experience in clinical and research settings with a variety of populations, with particular focus in working with people with traumatic brain injury (TBI). Her PhD research aimed to collaboratively develop a novel digital health communication partner training program with people with TBI. Her research in co-designing cognitive-communication interventions with key stakeholders, has laid the groundwork for the development of the Social Brain Toolkit, a suite of tools to support people with ABI and their communication partners have positive and successful conversations and social media experiences.
Dr. Joanne Steel
The University Of Newcastle
Speech-Language Pathologists' Views on Visual Discourse Elicitation Materials for Cognitive Communication Disorder after TBI
Abstract(s)
Background: Spoken discourse (e.g. conversations, telling anecdotes, retelling events) is commonly affected after traumatic brain injury (TBI). Discourse post-TBI may be less organized, lack cohesion and coherence, and provide too much or too little information. International guidelines recommend assessing and treating discourse post injury. In research literature, different discourse stimulus tasks have been used with cognitive communication disorder after TBI. Clinically, SLPs assess and treat discourse as part TBI communication management, using materials aligned with those used in research studies (Steel et al., 2024). However, SLPs’ perceptions on the suitability of these materials have not been formally investigated. This study aimed to explore the views of Australian SLPs on available visual discourse elicitation stimuli, the clinical utility and acceptability of these tasks, and alignment with materials reported in research studies.
Methods: This mixed methods research reports on a survey of Australian SLPs working with adults with cognitive communication disorder post TBI. In multiple choice and free text questions, SLPs were asked about their use of existing stimuli, preferences around visual imagery, client engagement with visuals, and their suggestions for future stimuli development. Responses were analysed using descriptive statistics and qualitative content analysis.
Results: A total of 34 SLPs responded, with 17 completed surveys. All participants reported routine use of a variety of discourse genres including narratives or picture description tasks, elicited using a range of tasks and materials (e.g., single picture, picture sequence, and story retelling). Participants identified the Cookie Theft (BDAE) as their most frequently used elicitation stimulus, followed by the Flowerpot Incident and the Picnic Scene (WAB). Reasons for use included SLP familiarity with task, ability to generate sample of sufficient length and complexity, and accessibility. No strong preferences for any visual materials were reported in this survey; however, overall, participants reported the existing visual materials were unsatisfactory for reasons including: client’s visual abilities, interests, age-group, and severity of injury. SLPs ranked their top features for inclusion in novel discourse elicitation task development. Age appropriateness and increased range of elicitation options were equally ranked first, followed by up-to-date images and personally relevant materials, and digital video options. Priorities for development also included standardised scoring systems and non-transcription-based approaches (e.g., checklists). Insights into SLPs’ clinical reasoning for discourse management post-TBI will be discussed.
Conclusions: This exploratory study provided insight into Australian SLPs' views on the visual elicitation stimuli for discourse post-TBI. When selecting visual resources, participants emphasised the need for an individualised, client-centred approach that considers visual abilities, clients' interests, age group, and injury severity. The current findings contribute to limited knowledge of stakeholder views on elicitation tasks and will inform future research on discourse resource development after TBI.
Methods: This mixed methods research reports on a survey of Australian SLPs working with adults with cognitive communication disorder post TBI. In multiple choice and free text questions, SLPs were asked about their use of existing stimuli, preferences around visual imagery, client engagement with visuals, and their suggestions for future stimuli development. Responses were analysed using descriptive statistics and qualitative content analysis.
Results: A total of 34 SLPs responded, with 17 completed surveys. All participants reported routine use of a variety of discourse genres including narratives or picture description tasks, elicited using a range of tasks and materials (e.g., single picture, picture sequence, and story retelling). Participants identified the Cookie Theft (BDAE) as their most frequently used elicitation stimulus, followed by the Flowerpot Incident and the Picnic Scene (WAB). Reasons for use included SLP familiarity with task, ability to generate sample of sufficient length and complexity, and accessibility. No strong preferences for any visual materials were reported in this survey; however, overall, participants reported the existing visual materials were unsatisfactory for reasons including: client’s visual abilities, interests, age-group, and severity of injury. SLPs ranked their top features for inclusion in novel discourse elicitation task development. Age appropriateness and increased range of elicitation options were equally ranked first, followed by up-to-date images and personally relevant materials, and digital video options. Priorities for development also included standardised scoring systems and non-transcription-based approaches (e.g., checklists). Insights into SLPs’ clinical reasoning for discourse management post-TBI will be discussed.
Conclusions: This exploratory study provided insight into Australian SLPs' views on the visual elicitation stimuli for discourse post-TBI. When selecting visual resources, participants emphasised the need for an individualised, client-centred approach that considers visual abilities, clients' interests, age group, and injury severity. The current findings contribute to limited knowledge of stakeholder views on elicitation tasks and will inform future research on discourse resource development after TBI.
Biography
Dr Joanne Steel, PhD, is a certified practising speech-language pathologist (CPSP) and lecturer in adult neurogenic communication disability at the University of Newcastle, Australia. Joanne’s research interest is the assessment and management of cognitive and social communication disorders after traumatic brain injury (TBI) particularly for people with severe injury. Her PhD investigated cognitive communication assessment and recovery during post-traumatic amnesia (PTA). This work contributed to knowledge on early communication recovery, with the aim of helping speech-language pathologists plan services and to inform patients and families about communication recovery. Joanne’s recent work has focused on improving narrative discourse, or storytelling (e.g. anecdotes, recounting events) for people with TBI. Impairment in this ability, which is common after TBI, can have a negative impact on the person's relationships and employment. Joanne's research has examined innovative assessments and interventions for post-TBI narratives, to help people with TBI in their everyday social interactions.
Ms. Petra Avramovic
Univ of Sydney
Optimising Co-Design Methodologies for People with Communication Disorders Following Neurological Impairment: Establishing Criteria, Adapting Practices, and Enhancing Inclusivity
Abstract(s)
Background: Co-design methodologies, which actively involve stakeholders in the design and development process, have gained traction in various fields, including healthcare. In the context of brain injury rehabilitation, these collaborative approaches are becoming more pertinent, as they offer the potential to create more tailored and effective interventions for individuals with communication disabilities. However, the variety of different approaches, techniques, and methods available can be overwhelming for researchers and may not always account for the specific communication challenges faced by this population.
Method: This meta-synthesis study investigates the application of co-design methodologies in the development of rehabilitation tools and resources for individuals with communication disabilities as a result of acquired brain injury (ABI). The ultimate aim of the study is to establish minimum co-design requirements for considering an intervention as “co-designed” and to develop adaptations to activities as informed by the evidence base, to support authentic inclusion and maximize participation. By systematically reviewing and extracting data from existing literature on co-design practices, the research explores various settings, formats, activities, tools, feedback mechanisms, and inclusivity strategies employed in these studies. Special attention has been given to the challenges and adaptations necessary for involving individuals with communication disorders in co-design processes. Systematic searches of nine databases (PsycINFO, MEDLINE, CINAHL, Embase, Cochrane Library, Scopus, Web of Science Core Collection, speechBITE, and PsycBITE) were conducted. The study includes reports on stakeholder engagement involving young people (12+) and adults with neurological impairments affecting cognition and communication.
Results: The analysis of the results of the literature searches is currently underway. This conceptual framework of co-design as applied to people with communication disabilities following ABI, will outline a range of different approaches for implementing co-design with people with communication disorders, discuss the potential barriers and adaptive strategies to enhance accessibility, and promote informed decision-making during the research design process. This research will also result in the creation of a reporting checklist tool for clinicians and researchers, aimed at improving the consistency, transparency, and scientific rigor of future co-design studies that include people with communication disorders.
Method: This meta-synthesis study investigates the application of co-design methodologies in the development of rehabilitation tools and resources for individuals with communication disabilities as a result of acquired brain injury (ABI). The ultimate aim of the study is to establish minimum co-design requirements for considering an intervention as “co-designed” and to develop adaptations to activities as informed by the evidence base, to support authentic inclusion and maximize participation. By systematically reviewing and extracting data from existing literature on co-design practices, the research explores various settings, formats, activities, tools, feedback mechanisms, and inclusivity strategies employed in these studies. Special attention has been given to the challenges and adaptations necessary for involving individuals with communication disorders in co-design processes. Systematic searches of nine databases (PsycINFO, MEDLINE, CINAHL, Embase, Cochrane Library, Scopus, Web of Science Core Collection, speechBITE, and PsycBITE) were conducted. The study includes reports on stakeholder engagement involving young people (12+) and adults with neurological impairments affecting cognition and communication.
Results: The analysis of the results of the literature searches is currently underway. This conceptual framework of co-design as applied to people with communication disabilities following ABI, will outline a range of different approaches for implementing co-design with people with communication disorders, discuss the potential barriers and adaptive strategies to enhance accessibility, and promote informed decision-making during the research design process. This research will also result in the creation of a reporting checklist tool for clinicians and researchers, aimed at improving the consistency, transparency, and scientific rigor of future co-design studies that include people with communication disorders.
Biography
Petra Avramović is a lecturer, early career researcher, and certified practicing speech pathologist. She has experience in clinical and research settings with a variety of populations, with particular focus in working with people with traumatic brain injury (TBI). Her PhD research aimed to collaboratively develop a novel digital health communication partner training program with people with TBI. Her research in co-designing cognitive-communication interventions with key stakeholders, has laid the groundwork for the development of the Social Brain Toolkit, a suite of tools to support people with ABI and their communication partners have positive and successful conversations and social media experiences.
Dr. Elise Bogart
Univ of Sydney
Expanding the Horizons for TBIBank: Reflecting on Accomplishments and Creating a Roadmap for the Future
Abstract(s)
Backgroud: TBIBank is an internationally shared database that includes a standardised spoken discourse protocol, a research database and a multimedia teaching platform. The protocol, established in 2005, has contributed the first standardised large dataset for communication disorders after traumatic brain injury (TBI). Since the protocol’s development, numerous published studies using data from the standardised dataset have improved our understanding of the nature of communication disorders post-TBI and optimized spoken discourse measurement in this population. However, this research has also highlighted the need to revise the protocol to ensure that it is; underpinned by research evidence, relevant across cultures and suitable for application across TBI severities. Hence, this study’s aim was to develop and obtain consensus on a new TBIBank protocol.
Methods: Three rounds of online consensus were scheduled with 22 representatives from Australia, the United States, England and China between August 2024 and November 2024. Asynchronous feedback options were offered for those who were unable to attend the scheduled meetings. The first round focused on strengths and weaknesses of the original nine protocol items including free speech tasks, picture descriptions/ sequences, narrative retelling and procedure. A post-meeting poll captured preferences for including, modifying or excluding the original items. The second round focused on generating novel ideas for additions to the protocol. A final round will obtain consensus on a finalized list of protocol items with refined wording and elicitation methods.
Results: Round 1 revealed consensus on inclusion of all the original TBIBank protocol tasks. One task reached consensus for modification, changing the word ‘speech’ to ‘communication’ to better reflect cognitive-communication disorder. Other minor wording changes were suggested. A further suggestion was to redraw stimuli for improved visual clarity. Key discussion points included integration of research evidence, potential impacts of protocol changes on datasets, sensitivity for mild cognitive impairments and cultural responsiveness. In Round 2, suggestions for new protocol items included: conversation sampling, the modern Cookie Theft picture, the Boy Who Cried Wolf retell, describing plans for a trip to New York (or another big city), and the voicemail elicitation task.
Conclusions: Two consensus rounds generated a list of items for developing a revised TBIBank 2.0 protocol that is supported by research evidence and expert consensus. In a final consensus round in November 2024, we will finalize the revised protocol, with expanded application across cultures and TBI severities.
Methods: Three rounds of online consensus were scheduled with 22 representatives from Australia, the United States, England and China between August 2024 and November 2024. Asynchronous feedback options were offered for those who were unable to attend the scheduled meetings. The first round focused on strengths and weaknesses of the original nine protocol items including free speech tasks, picture descriptions/ sequences, narrative retelling and procedure. A post-meeting poll captured preferences for including, modifying or excluding the original items. The second round focused on generating novel ideas for additions to the protocol. A final round will obtain consensus on a finalized list of protocol items with refined wording and elicitation methods.
Results: Round 1 revealed consensus on inclusion of all the original TBIBank protocol tasks. One task reached consensus for modification, changing the word ‘speech’ to ‘communication’ to better reflect cognitive-communication disorder. Other minor wording changes were suggested. A further suggestion was to redraw stimuli for improved visual clarity. Key discussion points included integration of research evidence, potential impacts of protocol changes on datasets, sensitivity for mild cognitive impairments and cultural responsiveness. In Round 2, suggestions for new protocol items included: conversation sampling, the modern Cookie Theft picture, the Boy Who Cried Wolf retell, describing plans for a trip to New York (or another big city), and the voicemail elicitation task.
Conclusions: Two consensus rounds generated a list of items for developing a revised TBIBank 2.0 protocol that is supported by research evidence and expert consensus. In a final consensus round in November 2024, we will finalize the revised protocol, with expanded application across cultures and TBI severities.
Biography
Dr Elise Bogart is a certified practising speech pathologist and senior lecturer in communication and neurological rehabilitation at the University of Sydney, Australia. Elise’s career has included clinical and academic roles across public, private, inpatient and community settings. Elise’s research aims to improve assessment and treatment of cognitive, linguistic and social communication disorders after acquired brain injury. Elise’s PhD investigated the process of communication recovery after a traumatic brain injury and the factors that influence prognosis. An outcome of this project was the establishment of the TBIBank database, now an internationally shared repository of spoken discourse samples. Elise went on to develop the TBIBank Grand Rounds which offers a free online, multimedia educational resource about communication disorders after a traumatic brain injury to help build clinicians’ confidence with diagnosis and treatment. Elise’s current interests focus on further expansion of the TBIBank resources and the use of storytelling-based treatments to support communication recovery.
