Bridget Burton

Background: In an era of unprecedented technology growth, many health and support services are now accessed through web content, creating both new opportunities and barriers for people with disabilities. Web-use requires communication skills, which can be problematic for people with aphasia (language/communication impairment). This study, the first stage of the ‘Bridging the Digital Divide’ project, aimed to explore experiences of web-use, identify priorities for improving access, and identify corresponding human-centred design principles. Methods: Experience-based co-design and human-centred design approaches were used. Focus groups were held with people with aphasia ( n = 9), family members ( n = 8), and health professionals ( n = 10). Each focus group had two sequential phases: an experience-gathering discussion and a structured prioritisation activity. Participants shared their experiences of accessing healthcare, information, and support services online. Reflexive thematic analysis was applied to the experience data, touchpoints were identified, and findings were synthesised into a generalised experience map organised around six components of Internet use. Priorities for improving web accessibility were established using the nominal group technique. Each stakeholder group generated and ranked priorities, which were subsequently pooled across groups and analysed using qualitative content analysis. Key priorities were mapped to human-centred design principles to guide future co-design. Results: Experience data produced six themes: (1) Aphasia-aware design, (2) Confidence building through support and practice, (3) Challenges to online service access, (4) Searching is hard when you can’t find the right words, (5) Written information online is overwhelming, and (6) Finding new ways to connect with peers. Priorities for improving web accessibility included greater access to learning and support resources, new technology and tools, communication-accessible design, inclusive and tailored technology, and help from a real person. These priorities were linked to four design principles: (1) Simple language, (2) Simple interface, (3) User customisation, and (4) Development of training materials and resources. Conclusion: People with aphasia experience challenges accessing services and information online. New and tailored technology, and awareness of communication-accessible design, were identified as priorities for improving access. These findings will be used to iteratively co-design and develop a web-browser extension in the next stage of research.

Background and Objectives: Communication changes in older adults affect independence, social participation, and quality of life. In aged care settings, timely identification of communication support needs and preferences is essential to upholding older people’s rights and ensuring person-centered care, yet communication is not routinely assessed. This scoping review systematically identifies and describes instruments that measure communication support needs and preferences in older adults. Research Design and Methods: Following Preferred Reporting Items for Systematic Reviews and Meta-Analyses extension for Scoping Reviews guidelines, we searched PubMed, PsycINFO, CINAHL, and Embase alongside gray literature. Titles, abstracts, and full texts were screened against eligibility criteria using Covidence. Data on instrument context, content, and administration were extracted and synthesized using content analysis and the World Health Organization International Classification of Functioning, Disability and Health framework. Results: 26 publications describing 29 instruments were included. Instruments were typically condition-specific (e.g., dementia) or impairment-specific (e.g., hearing loss). Communication preferences and personal factors, such as cultural and linguistic background, were rarely considered, and only one instrument assessed both needs and preferences. While self-report instruments were often intended for completion by the older adult, only one offered a communication-accessible version (e.g., easy read text, larger font, visual aids). Discussion and Implications: No existing instrument adequately measures communication support needs and preferences for use in aged care settings. A condition-agnostic instrument is needed that adopts a holistic, biopsychosocial perspective; accounts for the aged care environment; incorporates multiple perspectives; and is communication-accessible. Developing such a measure is a foundational step toward accurate, consistent, and timely identification of the communication needs of older adults in aged care.

Purpose: The aim of this study was to reach consensus among researchers, clinicians, and service managers on the most important outcomes of cognitive-communication treatments for children and adolescents (ages 5–18 years) with traumatic brain injury, in the postacute stage of rehabilitation and beyond. Method: This is an international three-round e-Delphi study. In Round 1, participants answered three open-ended questions, generating important treatment outcomes at three stages of development (5–11, 12–15, and > 15–18 years). Results were analyzed using qualitative content analysis and combined with outcomes from a previous scoping review. In Rounds 2–3, outcome importance was ranked on a 9-point scale. Consensus was defined a priori with outcomes rated as being “essential” (7–9) by at least 70% of respondents and rated 1–3 by less than 15% of respondents. Consensus outcomes were linked to the International Classification of Functioning, Disability and Health (ICF). Results: A total of 360 outcomes met consensus for all age groups. For 5- to 11-year-old children, important outcomes linked almost equally to the Body Functions ( n = 52, 13.1%) and Activity/Participation ( n = 50, 12.6%) components of the ICF. Outcomes of “successful start to school,” “return to school,” and “school functioning” were uniquely important. For older children and adolescents, outcomes linked to the Activity/Participation component of the ICF most frequently (12–15 years: n = 62, 15.6%; > 15–18 years: n = 73, 18.4%). For older cohorts, unique outcomes of “emotional safety,” “employment,” and “life skill development” met consensus. Conclusions: Participants consider many outcomes, spanning most of the ICF, to be important for children and adolescents with cognitive-communication disorders (CCDs). As children and adolescents age, the importance of ICF components shifts, and distinct outcomes emerge, highlighting the necessity of developmentally relevant rehabilitation. The broad range of outcomes reaching consensus reflects pediatric CCD complexity and the need for holistic, person-centered care. Future research should explore the priorities of children and adolescents with CCDs and their families.

Background: Experience-based co-design (EBCD) is a well-established method to engage patients, family members and healthcare professionals in the co-design of interventions. A key principle of EBCD is equal partnership. For adults with acquired communication disabilities, additional measures are required to ensure authentic, rather than tokenistic, engagement. The aim of this study was to evaluate the co-design process from the perspectives of co-designers (individuals with aphasia (impaired language/communication), family members, speech pathologists), and researchers (speech pathologists and technology developer) participating in EBCD workshops, with respect to co-designer involvement, engagement, experiences and personal outcomes. Workshops represented the co-design phase in the EBCD of a novel technology for self-management of post-stroke aphasia. Methods: Mixed methods process evaluation within a convergent-parallel research design was conducted. Twelve co-designers participated in 15 EBCD workshops. Co-designers completed personal outcome surveys and semi-structured interviews pre- and post-workshops, with a pulse survey midway. Researcher reflections were recorded during a debriefing session. Survey data were analysed using descriptive statistics and Wilcoxon signed-rank tests for pre-post comparisons. Semi-structured interviews and researcher reflections were analysed using the Framework Method and qualitative content analysis. Results: Overall, findings indicated co-designers had positive experiences during EBCD and believed their ideas were integrated into the interface design. Suggestions to improve communication accessibility were provided. Conclusions: With appropriate support, persons with aphasia can meaningfully participate in EBCD.

Background: In aged‐care settings, direct care staff play a crucial role in supporting older people with communication needs. Many direct care staff, however, have unmet skill needs in interpersonal, intercultural, and intergenerational communication. Communication Partner Training (CPT) provides a potential solution. However, it is not known if existing programs address the diverse communication needs encountered in aged‐care settings. We sought to identify the key features of existing CPT programs to determine their suitability for the Australian aged‐care context.Aims: To identify existing CPT programs relevant to aged‐care settings and to describe their content and format.Methods: A scoping review was conducted in alignment with the Joanna Briggs Manual for Evidence Synthesis and Preferred Reporting Items for Systematic Reviews and Meta‐Analyses for Scoping Reviews reporting guidelines. Using a systematic search, we identified peer‐reviewed articles from five electronic databases: PubMed, PsycINFO, Embase, Cochrane and CINAHL. All retrieved articles were screened by title and abstract; 20% were independently screened by a second reviewer. All full‐text articles were independently assessed by two reviewers. Data describing the content and format of identified CPT programs was extracted using the Intervention Taxonomy and an author‐developed tool.Main Contribution: This review highlights critical gaps in existing CPT programs for aged‐care settings. Identified programs were predominantly disorder‐specific (79%), with the vast majority focusing on conditions like dementia or aphasia and failing to address broader communication needs arising from personal, social and environmental factors. Notably, no programs addressed intercultural communication, despite known cultural and linguistic diversity among aged‐care workers and recipients in countries such as Australia. Furthermore, few (9%) included intergenerational communication considerations. Most programs relied on in‐person delivery methods (67%), often led by health professionals (71%), which may be impractical for resource‐constrained and geographically dispersed aged‐care services. Furthermore, reported outcome measures varied (187 across 90 articles), and few evaluated both trainee and client (the ‘dyad’) outcomes. These findings underscore the need for comprehensive, scalable and contextually relevant CPT programs to address the complex communication challenges seen in aged‐care settings.Conclusions: There is a need for a comprehensive CPT program that is fit‐for‐purpose for direct care staff in aged‐care settings. This program should address the multifaceted and intersecting communication support needs of aged‐care recipients, including intercultural and intergenerational communication differences. The program should also incorporate resource‐feasible delivery methods and evaluate dyadic communication outcomes. Closing these gaps is vital to enhancing quality of care and life for older adults in aged‐care settings.WHAT THIS PAPER ADDS: What is already known on the subject: Many older Australians have complex, unmet communication support needs. In aged‐care settings, direct care staff play a crucial role in supporting older people to communicate. Many aged‐care workers, however, have their own unmet skill needs in interpersonal, intercultural and intergenerational communication. Communication partner training (CPT) provides a potential solution. However, it is not known if existing programs address the diverse communication support needs encountered in aged‐care settings. What this paper adds to existing knowledge: Using a scoping review methodology, we identified and described CPT programs for direct support staff who work with older adults. Most CPT programs were disorder‐specific and targeted communication needs in dementia or aphasia. As aged‐care recipients have multifaceted, complex and intersecting communication support needs, these programs may fall short of addressing the training needs of aged‐care workers. The mode of training delivery was predominately in‐person and health professional‐led. Such delivery modes may not support implementation given resource constraints across the Australian aged‐care sector. CPT that can be feasibly implemented in aged‐care settings to address complex and intersecting communication support needs is required. What are the potential or actual clinical implications of this work?: Our analysis highlights the need for comprehensive, disorder‐agnostic CPT tailored for aged‐care staff to address diverse communication support needs. This CPT should consider scalable delivery modes effective across Australia's vast geography and limited trainer availability. It must include outcome measures reflecting the perspectives of communication support partners—older Australians in aged care with communication challenges. To tackle the health, personal and environmental communication barriers in aged care, a fit‐for‐purpose CPT program, co‐designed with key stakeholders, is essential to ensure the training is both feasible and acceptable to meet the unmet needs of intended end‐users.

Background: Currently, there are no agreed quality standards for post‐stroke aphasia services. Therefore, it is unknown if care reflects best practices or meets the expectations of people living with aphasia. We aimed to (1) shortlist, (2) operationalise and (3) prioritise best practice recommendations for post‐stroke aphasia care.Methods: Three phases of research were conducted. In Phase 1, recommendations with strong evidence and/or known to be important to people with lived experience of aphasia were identified. People with lived experience and health professionals rated the importance of each recommendation through a two‐round e‐Delphi exercise. Recommendations were then ranked for importance and feasibility and analysed using a graph theory–based voting system. In Phase 2, shortlisted recommendations from Phase 1 were converted into quality indicators for appraisal and voting in consensus meetings. In Phase 3, priorities for implementation were established by people with lived experience and health professionals following discussion and anonymous voting.Findings: In Phase 1, 23 best practice recommendations were identified and rated by people with lived experience (n = 26) and health professionals (n = 81). Ten recommendations were shortlisted. In Phase 2, people with lived experience (n = 4) and health professionals (n = 17) reached a consensus on 11 quality indicators, relating to assessment (n = 2), information provision (n = 3), communication partner training (n = 3), goal setting (n = 1), person and family‐centred care (n = 1) and provision of treatment (n = 1). In Phase 3, people with lived experience (n = 5) and health professionals (n = 7) identified three implementation priorities: assessment of aphasia, provision of aphasia‐friendly information and provision of therapy.Interpretation: Our 11 quality indicators and 3 implementation priorities are the first step to enabling systematic, efficient and person‐centred measurement and quality improvement in post‐stroke aphasia services. Quality indicators will be embedded in routine data collection systems, and strategies will be developed to address implementation priorities.Patient and Public Contribution: Protocol development was informed by our previous research, which explored the perspectives of 23 people living with aphasia about best practice aphasia services. Individuals with lived experience of aphasia participated as expert panel members in our three consensus meetings. We received support from consumer advisory networks associated with the Centre for Research Excellence in Aphasia Rehabilitation and Recovery and the Queensland Aphasia Research Centre.

Objective People with post-stroke aphasia (language/communication impairment) and their supporters report mixed satisfaction with stroke and aphasia care. To date, however, their journey of care and the key service interactions that shape their experience have not been comprehensively explored. We aimed to investigate the lived experience of post-stroke aphasia care, across the continuum of care and by geographical location, to establish priorities for service design. Design This is the first stage of an experience-based co-design study. We purposively sampled people with aphasia (PWA) and significant others (SOs) across 21 hospital and health service sites, community groups and by self-referral. Participants shared experiences of care in online interviews and focus groups. Touchpoints (key moments that shape experience) and unmet needs were identified using qualitative thematic analysis. Priorities for service design were established using an adapted nominal group technique. Setting Sites spanned remote, regional and metropolitan areas in Queensland, Australia. Participants PWA (n=32; mild=56%; moderate=31%; severe=13%) and SOs (n=30) shared 124 experiences of acute, rehabilitation and community-based care in 23 focus groups and 13 interviews. Results Both positive and negative healthcare experiences occurred most frequently in hospital settings. Negative experiences regularly related to communication with health professionals, while positive experiences related to the interpersonal qualities of healthcare providers (eg, providing hope) for PWA, or witnessing good rapport between a PWA and their health professional for SOs. To improve services, PWA prioritised communicatively accessible education and information and SOs prioritised access to psychological and peer support. Conclusions We identified key aspects of post-stroke aphasia care that shape experience. The needs of PWA and SOs may be better met through health professional training in supported communication, increased service availability in regional and remote areas, communication-accessible hospital environments, increased access to psychological and peer support, and meaningful involvement of SOs in rehabilitation.

Background: Aphasia is a common consequence of stroke, and people who live with this condition experience poor outcomes. Adherence to clinical practice guidelines can promote high-quality service delivery and optimize patient outcomes. However, there are currently no high-quality guidelines specific to post-stroke aphasia management. Aims: To identify and evaluate recommendations from high-quality stroke guidelines that can inform aphasia management. Summary of review: We conducted an updated systematic review in accordance with PRISMA guidelines to identify high-quality clinical guidelines published between January 2015 and October 2022. Primary searches were performed using electronic databases: PubMed, EMBASE, CINAHL, and Web of Science. Gray literature searches were conducted using Google Scholar, guideline databases, and stroke websites. Clinical practice guidelines were evaluated using the Appraisal of Guidelines and Research and Evaluation (AGREE II) tool. Recommendations were extracted from high-quality guidelines (scored > 66.7% on Domain 3: “Rigor of Development”), classified as aphasia-specific or aphasia-related, and categorized into clinical practice areas. Evidence ratings and source citations were assessed, and similar recommendations were grouped. Twenty-three stroke clinical practice guidelines were identified and 9 (39%) met our criteria for rigor of development. From these guidelines, 82 recommendations for aphasia management were extracted: 31 were aphasia-specific, 51 aphasia-related, 67 evidence-based, and 15 consensus-based. Conclusion: More than half of stroke clinical practice guidelines identified did not meet our criteria for rigorous development. We identified 9 high-quality guidelines and 82 recommendations to inform aphasia management. Most recommendations were aphasia-related; aphasia-specific recommendation gaps were identified in three clinical practice areas: “accessing community supports,” “return to work, leisure, driving,” and “interprofessional practice.”