Lisa Kakonge, Hannah Boamah, Shannon E Scratch, Nnenna Utomi, Amtul Hayee, Danaeya Wolfe, Jessica Tomarchio, Kathy Gravel, Michelle Phoenix, Briano Di Rezze, Catherine Wiseman-Hakes, Lyn S Turkstra
{"title":"Co-designing a survey on computer-mediated communication use among adolescents with acquired brain injury: evaluating participant experiences in a mixed-methods study.","authors":"Lisa Kakonge, Hannah Boamah, Shannon E Scratch, Nnenna Utomi, Amtul Hayee, Danaeya Wolfe, Jessica Tomarchio, Kathy Gravel, Michelle Phoenix, Briano Di Rezze, Catherine Wiseman-Hakes, Lyn S Turkstra","doi":"10.1071/IB25005","DOIUrl":"https://doi.org/10.1071/IB25005","url":null,"abstract":"<p><p>Background Computer-mediated communication (CMC) - using technology to engage with others via digital platforms (e.g. social media) - is an integral mode of social interaction for adolescents. Integrating CMC into rehabilitation could benefit adolescents with acquired brain injury (ABI), yet its use is under-studied. This study aimed to address this gap by co-designing a survey on CMC use among adolescents with ABI and evaluating the project team's perceptions of engagement in the co-design process post-study. Methods The project team comprised 10 interest-holders: youth with ABI (n =2), rehabilitation professionals (n =2), researchers (n =5), and a family member (n =1). Survey co-design sessions conducted via videoconferencing were guided by the Double Diamond (DD) Framework. Mixed-methods analysis included descriptive statistics from the Patient and Public Engagement Evaluation Tool (PPEET), qualitative insights on team engagement and reflexive thematic analysis of memos, and overview of survey categories and questions. Results Five co-design sessions resulted in the Social Media Building Blocks (SMBB) survey, refined through piloting with two youth with ABI and a health literacy review. PPEET data showed strong team engagement, with 5/6 'strongly agreeing' their views were heard and valued. Thematic analysis of team memos identified three themes: valuing diverse perspectives, enthusiastic engagement in co-design, and the importance of reflexivity. The final SMBB survey included four question categories: participation in online communication, accessibility, post-ABI communication experiences, and desired supports. Conclusions Project team members valued the collaborative survey design phases and engaging youth with ABI. Findings highlight co-design frameworks' potential to enhance engagement in rehabilitation research.</p>","PeriodicalId":56329,"journal":{"name":"Brain Impairment","volume":"26 ","pages":""},"PeriodicalIF":1.4,"publicationDate":"2025-09-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"145115036","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Erin Kelly, Maeve O'Neill, Emma Finch, Anna O'Gorman
{"title":"Improving services for patients with disorders of consciousness post acquired brain injury: evaluation of family and staff education packages in a neurosciences unit.","authors":"Erin Kelly, Maeve O'Neill, Emma Finch, Anna O'Gorman","doi":"10.1071/IB24118","DOIUrl":"https://doi.org/10.1071/IB24118","url":null,"abstract":"<p><p>Background International guidelines recommend a specialised, multidisciplinary approach to optimise outcomes post disorders of consciousness (DoC), with family education the cornerstone of management. Despite this, multidisciplinary staff report reduced confidence and skill in the management of patients with DoC, and education provision to families is inconsistent. This study aimed to evaluate the effectiveness of DoC education packages in enhancing self-perceived knowledge, confidence and skill of staff and families surrounding acute DoC management. Methods Standardised education packages were developed and delivered to: (1) neurosciences staff, and (2) families of patients with DoC. Pre and post education surveys were used to measure family and staff self-perceived knowledge, confidence and skill in management of patients with DoC. Non-parametric statistics were utilised to analyse the quantitative data, whereas thematic analysis was used to analyse open-ended responses. Results Twenty-six family members and 86 health professionals were recruited. There was a statistically significant improvement across all areas of self-perceived knowledge, confidence and skill post introduction of the education packages (all P Conclusions DoC family and staff education packages can enhance family and staff self-perceived knowledge, confidence, and skill surrounding management of patients with DoC.</p>","PeriodicalId":56329,"journal":{"name":"Brain Impairment","volume":"26 ","pages":""},"PeriodicalIF":1.4,"publicationDate":"2025-09-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"145115214","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Kate D'Cruz, Rebecca Rothman, Stacey Oliver, Stephanie Antonopoulos, Jacinta Douglas, Di Winkler
{"title":"Co-designing with adults with acquired neurological disability in the community: a scoping review and thematic synthesis.","authors":"Kate D'Cruz, Rebecca Rothman, Stacey Oliver, Stephanie Antonopoulos, Jacinta Douglas, Di Winkler","doi":"10.1071/IB25027","DOIUrl":"10.1071/IB25027","url":null,"abstract":"<p><p>Background Co-design is gaining momentum in disability. However, there is limited research evidence to guide co-designing with people with acquired neurological disability. The aim of this scoping literature review was to understand when and how co-design is used with adults with acquired neurological disability, as well as the experience of participating in co-design. Methods Systematic searches were conducted in CINAHL, MEDLINE, PsycINFO, Scopus and Embase databases. The search was limited to qualitative studies or studies using mixed methods in which qualitative data could be extracted for thematic analysis. Results Of the 4200 articles retrieved, 45 were eligible for the review. Data extracted across the included studies showed variability in the definition and implementation of co-design, including recruitment, timing and the role of co-design contributors. Thematic analysis of the lived experience resulted in three themes: (1) a meaningful experience, (2) balancing group dynamics, and (3) an unfamiliar process. Conclusions Co-design with adults with acquired neurological disability is an emerging area of practice, valued by co-design contributors with disability, health professionals and researchers. Future work is needed to better define and operationalise co-design, with investment in the facilitator role to optimise involvement of people with disability.</p>","PeriodicalId":56329,"journal":{"name":"Brain Impairment","volume":"26 ","pages":""},"PeriodicalIF":1.4,"publicationDate":"2025-09-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"145115141","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Deborah L Snell, Josh W Faulkner, Jonathan A Williman, Noah D Silverberg, Alice Theadom, Lois J Surgenor, Richard J Siegert
{"title":"Associations between illness perceptions, distress, self-reported cognitive difficulties and cognitive performance after mild traumatic brain injury.","authors":"Deborah L Snell, Josh W Faulkner, Jonathan A Williman, Noah D Silverberg, Alice Theadom, Lois J Surgenor, Richard J Siegert","doi":"10.1071/IB24074","DOIUrl":"https://doi.org/10.1071/IB24074","url":null,"abstract":"<p><p>Objectives To examine associations between subjective and objective cognitive problems, and factors potentially modifying these relationships, after mild traumatic brain injury (mTBI). Methods Treatment-seeking adults (n =95) were assessed 6 weeks (Time 1) and then 6months later (Time 2) after mTBI. Validated questionnaires assessed cognitive, emotional and somatic mTBI symptoms, distress, catastrophising, and beliefs about symptoms and recovery. Cognitive performance was measured using the National Institutes of Health Toolbox Cognition Battery. Using correlations and linear regression, we explored associations between psychological factors, objectively measured cognitive performance and self-reported cognitive symptoms. Results There were only modest correlations between subjective cognitive symptoms and objective cognitive performance at assessment timepoints. In contrast, there were medium to large correlations between subjective cognitive symptoms, post-concussion symptom burden and psychological factors. Post-concussion symptom burden and beliefs about symptoms and recovery at Time 1 predicted persisting self-reported cognitive symptoms at Time 2. Conclusions High post-concussion symptom burden and non-recovery expectations may increase risk for persistent subjectively experienced cognitive symptoms. Our findings may guide targeted treatment efforts focusing on factors with potential to influence cognitive symptom reporting after mTBI. Summary In this study, we investigated factors that might influence cognitive recovery after concussion. We found having many post-concussion symptoms and fears of nonrecovery may increase risk for persisting cognitive symptoms. Our findings may guide targeted treatment efforts focusing on factors with potential to influence cognitive symptom reporting after concussion.</p>","PeriodicalId":56329,"journal":{"name":"Brain Impairment","volume":"26 ","pages":""},"PeriodicalIF":1.4,"publicationDate":"2025-08-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"145115074","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Peter Worthy, Dennis Frost, Trevor Hunter, India Anderson, Tim Kastelle, Janet Wiles, Nancy A Pachana, Jacki Liddle
{"title":"Disrupting hackathons: reflections on creating inclusive design events through collaboration.","authors":"Peter Worthy, Dennis Frost, Trevor Hunter, India Anderson, Tim Kastelle, Janet Wiles, Nancy A Pachana, Jacki Liddle","doi":"10.1071/IB24136","DOIUrl":"https://doi.org/10.1071/IB24136","url":null,"abstract":"<p><p>The involvement of people with diverse needs in technology design is recommended, but not yet standard practice. Hackathons are design events that aim to engage people in creating innovative technologies. They are typically not inclusive of all technology users. Older people, including those with neurological conditions, need to be involved in developing technology solutions aiming to support them. Following a research project exploring technologies to support connection of older people, a participatory design event was held. In adapting traditional approaches considering accessibility, an inclusive approach to hackathons was developed with a team including people with lived experience, technology developers, health professionals and caregivers. Accessibility adaptations included longer timeframes, multiple ways of participating (including online and in-person), asynchronous and flexible participation, supports for participation (communication, memory), and reduced technical focus. This enabled the engagement of a diverse group of event participants, including many who were unable to participate in traditional hackathons. Lessons learned in the process included the need to balance structure and flexibility with more scaffolding, skilling up team members about key issues, and including a clear end point. These learnings have been applied in other participatory research and design work to enable inclusive engagement.</p>","PeriodicalId":56329,"journal":{"name":"Brain Impairment","volume":"26 ","pages":""},"PeriodicalIF":1.4,"publicationDate":"2025-08-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"145115151","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Lynn Grayson, Marian C Brady, Leanne Togher, Myzoon Ali
{"title":"'I think I'd get a lot out of something where my views count and I could help other people' - co-designing a family project-based intervention with people with lived experience of traumatic brain injury.","authors":"Lynn Grayson, Marian C Brady, Leanne Togher, Myzoon Ali","doi":"10.1071/IB24128","DOIUrl":"https://doi.org/10.1071/IB24128","url":null,"abstract":"<p><p>Background Meaningful engagement with families who have lived experience of traumatic brain injury (TBI) is essential if interventions are to more closely align with their needs. The aim of this study was to co-design a family project-based intervention including people with lived experience of TBI and explore participant experience. Methods People with cognitive-communication disorders following severe TBI, and their family members, were recruited from three Scottish brain injury services. The co-design teams participated in Microsoft Teams focus groups (October 2022 to January 2023). A range of adapted communication tools were developed to facilitate the co-design process, and e-surveys about the co-design experience were completed. Qualitative data arising from the focus groups were analysed thematically, and survey data were analysed descriptively. Results Thirteen participants (6 people following TBI and 7 family members) attended the co-design groups. The concept of a family project-based intervention was positively received and adaptions to content identified: inclusion of real-life examples, family support resources and a toolkit of strategies. A range of perceived personal benefits of being involved in the co-design groups was also reported; peer support, feeling heard and helping others. Conclusion People with cognitive-communication disorders following severe TBI, and their families, can make a valuable contribution to co-design research and benefit from the process. Following development of the adapted content, progression to the next design stage will involve feasibility testing of the co-designed family project-based intervention.</p>","PeriodicalId":56329,"journal":{"name":"Brain Impairment","volume":"26 ","pages":""},"PeriodicalIF":1.4,"publicationDate":"2025-08-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"145115208","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Ella-Rose Minter, Lee Cubis, Eve Roseingrave, Libby Witts, Di Winkler, Jacinta Douglas
{"title":"Navigating the transition from hospital to community: experiences of people with acquired disability and complex needs.","authors":"Ella-Rose Minter, Lee Cubis, Eve Roseingrave, Libby Witts, Di Winkler, Jacinta Douglas","doi":"10.1071/IB24094","DOIUrl":"https://doi.org/10.1071/IB24094","url":null,"abstract":"<p><p>Background People with disability and complex needs frequently face long hospitalisations. They also risk being discharged without adequate housing and supports. Hospital discharge planning is crucial for a safe and effective transition to the community. The aim of this qualitative, phenomenological study was to understand the lived experience of hospital discharge and returning to the community for people with acquired disability and complex needs. Methods Fifteen individuals (80% men) aged 31-66years, recently discharged from hospital and eligible for access to the National Disability Insurance Scheme were interviewed 1month post-hospital discharge. Results Three primary themes were developed: being in hospital, preparing to return to the community and returning to the community. Participants shared their experiences navigating the hospital system, disability services and the National Disability Insurance Scheme. They identified factors that facilitated their community integration and highlighted barriers that hindered their ability to effectively navigate hospital and community settings. Conclusion The current study findings underscore the complex interplay between hospital discharge and the transition back to the community for people with acquired disability and complex needs. These findings also highlight opportunities to co-design solutions that improve the experience of leaving hospital and preparing for life after discharge.</p>","PeriodicalId":56329,"journal":{"name":"Brain Impairment","volume":"26 ","pages":""},"PeriodicalIF":1.4,"publicationDate":"2025-08-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"145115241","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Mark Brown, Kate D'Cruz, Stacey Oliver, Di Winkler, Jacinta Douglas
{"title":"Understanding the NDIS experience: a qualitative study on participant perspectives.","authors":"Mark Brown, Kate D'Cruz, Stacey Oliver, Di Winkler, Jacinta Douglas","doi":"10.1071/IB24103","DOIUrl":"https://doi.org/10.1071/IB24103","url":null,"abstract":"<p><p>Background The National Disability Insurance Scheme (NDIS) looms large in the lives of Australians with disability. This qualitative study aimed to better understand the experiences of NDIS participants interacting with the scheme in the management of their supports. Methods Thirteen adult NDIS participants, including 10 people with neurological disability, were interviewed. Interviews were audio recorded and transcribed, and interview data were analysed using constructivist grounded theory methods. Results Analysis provided insights into NDIS participants experiences. Participants described improvements in their lives since joining the scheme, alongside experiences of frustration with the challenges of navigating the scheme. Three key themes, and associated sub-themes, were identified: (1) living a better life, (2) losing trust in the NDIS, and (3) hopes for the future. Conclusions The findings highlight a complex interplay of gratitude alongside fear and frustration among NDIS participants with complex disability. While participants welcomed increased choice and control, they also expressed concerns about inequities and difficulties in navigating the scheme. The importance of supportive interpersonal relationships, or 'allies', in successfully navigating the NDIS was emphasised. For reforms to be effective and responsive, it is critical they are designed and implemented in partnership with people with lived experiences as NDIS participants.</p>","PeriodicalId":56329,"journal":{"name":"Brain Impairment","volume":"26 ","pages":""},"PeriodicalIF":1.1,"publicationDate":"2025-06-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144287378","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Jason Bransby-Bell, Christian Minett, Liesel Jeffers, Melanie Sauer, Zoe A Michaleff
{"title":"Health professionals' and consumers' perspectives of the important features of a community brain injury rehabilitation service.","authors":"Jason Bransby-Bell, Christian Minett, Liesel Jeffers, Melanie Sauer, Zoe A Michaleff","doi":"10.1071/IB24056","DOIUrl":"https://doi.org/10.1071/IB24056","url":null,"abstract":"<p><p>Background Adults with traumatic brain injuries frequently encounter challenges with cognitive, emotional, physical and communicative function, and they require specialist rehabilitation and support. The aim of this study was to identify and prioritise features of a brain injury rehabilitation service that are important to health professionals and consumers (clients and family) in a regional area. Methods The nominal group technique methodology was used. Between July and September 2022, four workshops were held with healthcare professionals (HCPs, n =19) and consumers (n =3). Workshop discussions were recorded and thematically analysed to identify the most important themes per group and overall. Results Six key themes were identified. These related to a brain injury rehabilitation service being: (1) equitable and person-centred, (2) able to provide specialised services in response to client's needs, (3) well-connected and having a central coordinating role, (4) providing advocacy, education and facilitation of peer support, (5) building the capacity of the wider workforce, and (6) having clear and transparent clinical processes. There was substantial alignment between the themes of HCPs and consumers. Conclusion The findings of this study offer valuable insights for the redesign, strategic planning and enhancement of brain injury rehabilitation services especially in regional areas.</p>","PeriodicalId":56329,"journal":{"name":"Brain Impairment","volume":"26 ","pages":""},"PeriodicalIF":1.1,"publicationDate":"2025-05-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144082431","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Michelle Kelly, Michelle Kelly, Simon Mierendorff, Simon Mierendorff, Kylie Wales, Kylie Wales, Johanna Voeste, Johanna Voeste, Joanne Allen, Joanne Allen, Skye McDonald, Skye McDonald
{"title":"Telehealth-based assessment of cognition, social cognition, mood, and functional independence in older adults.","authors":"Michelle Kelly, Michelle Kelly, Simon Mierendorff, Simon Mierendorff, Kylie Wales, Kylie Wales, Johanna Voeste, Johanna Voeste, Joanne Allen, Joanne Allen, Skye McDonald, Skye McDonald","doi":"10.1071/IB24114","DOIUrl":"10.1071/IB24114","url":null,"abstract":"<p><p>Background Mild cognitive impairment affects over 15% of adults aged 50+ years and is a primary risk indicator for dementia. Although access to assessment is crucial, many older adults face barriers to in-person evaluation. Methods This study used a randomised cross-over design to assess the practicality, acceptability, and adaptation of a telehealth-based screening battery tailored for older adults. Forty-three volunteers aged 50+ years (m =70.3, s.d.=10.8) completed in-person or videoconference assessments, including the Addenbrooke's Cognitive Examination-III (ACE-III), Brief Assessment of Social Skills (BASS), Hospital Anxiety and Depression Scales (HADS), Modified Barthel Index (MBI), and Assessment of Living Skills And Resources-2 (ALSAR-R2). The alternate format was administered after 3weeks. Practicality was assessed with reference to task modifications, completion, and administration time. Acceptability was evaluated via questionnaire. Reliability was assessed using intraclass correlation coefficients (ICCs). Results Minimal modifications were needed for the videoconference format, and it was highly acceptable to respondents. Reliability across formats was excellent for BASS Empathy, HADS Depression, MBI and ALSAR-R2 (ICC=1.00-0.92) and good for ACE-III, HADS Anxiety, and BASS Face Emotion Perception, Face Identification, and Social Disinhibition scales (ICC=0.77-0.89). Conclusions Findings support the feasibility of telehealth-based administration of the screening battery; however, biases in emotion perception performance between modalities require further research.</p>","PeriodicalId":56329,"journal":{"name":"Brain Impairment","volume":"26 ","pages":""},"PeriodicalIF":1.1,"publicationDate":"2025-05-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144035501","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}