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":"https://doi.org/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}
Liana S Cahill, Lauren J Christie, Danielle Sansonetti, Suzanne Currie, Mithu Palit, Nita Robin Jacob, Daniella Leifer, Natasha A Lannin
{"title":"An evidence-informed approach to discharge planning from specialist brain injury rehabilitation: a mixed method study using the PRECEDE-PROCEED model.","authors":"Liana S Cahill, Lauren J Christie, Danielle Sansonetti, Suzanne Currie, Mithu Palit, Nita Robin Jacob, Daniella Leifer, Natasha A Lannin","doi":"10.1071/IB24029","DOIUrl":"https://doi.org/10.1071/IB24029","url":null,"abstract":"<p><p>Background The transition from inpatient rehabilitation to community living is a challenging time for adults with acquired brain injury (ABI). This study aimed to investigate barriers to evidence-based discharge practices in inpatient ABI rehabilitation and to collaboratively design implementation solutions with rehabilitation healthcare professionals. Method We used a theoretical problem-analysis approach guided by the Predisposing, Reinforcing, and Enabling Constructs in Educational Diagnosis and Evaluation (PRECEDE) - Policy, Regulatory, and Organizational Constructs in Educational and Environmental Development (PROCEED) model. Participants were healthcare professionals working in inpatient ABI rehabilitation and external stakeholders working with patients with ABI post-discharge. Triangulation of data and methods (audits, surveys, focus groups) were employed to provide a comprehensive analysis of barriers and their causes. Results A total of 47 healthcare professionals (70% female) and 14 external stakeholders (71% female) participated. Factors negatively impacting on discharge were classified as pre-disposing (inconsistent planning, limited staff knowledge of discharge goals), enabling (accommodation and funding) and reinforcing (communication, family, nursing involvement). Suggested facilitators for coordinated discharge included clear and consistent communication, support for patient-family emotional adjustment to disability and discharge plans, and improved early access to funding schemes. Conclusion Theory-informed and collaborative methods led to recommendations including a discharge pathway and checklist, meetings with clear objectives for discharge discussions, and an increase in family and nursing staff involvement to improve discharge processes.</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":"144164263","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}
{"title":"The role of illness perceptions in post-concussive symptoms in the chronic phase after mild traumatic brain injury (mTBI).","authors":"Fleur Vermeer, Nikita Frankenmolen, Tobias Coppes, Janneke Schuurman, Dirk Bertens","doi":"10.1071/IB24038","DOIUrl":"10.1071/IB24038","url":null,"abstract":"<p><p>Background Maladaptive illness perceptions are known to contribute to the development of persistent post-concussive symptoms 3-6months after mild traumatic brain injury (mTBI), but it is unclear which role these perceptions play in the chronic phase. This study examined which illness perceptions impact post-concussive and psychological symptoms in the chronic phase post-mTBI. Methods This observational study used data from 112 adults who experienced persistent symptoms following mTBI and were referred for multidisciplinary treatment. Measures included a short version of the Illness Perception Questionnaire, the Rivermead Post-Concussion Symptoms Questionnaire and the Brief Symptom Inventory 18. Results Specific illness perceptions were unique predictors of post-concussive symptoms (understanding, identity, duration and emotional response) as well as anxiety and depression symptoms (understanding and emotional response). Conclusion Although the aetiology of persistent post-concussive symptoms is multifactorial, the finding that specific illness perceptions contribute to experienced symptoms in the chronic phase post-mTBI underline the importance of psychoeducation and psychotherapeutic interventions in this population.</p>","PeriodicalId":56329,"journal":{"name":"Brain Impairment","volume":"26 ","pages":""},"PeriodicalIF":1.1,"publicationDate":"2025-04-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143813042","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}
Christina L Ekegren, Candice McBain, Libby Callaway, Liz Gill, Grahame Simpson, Grainne Cruickshank, Mohit Arora, Ian D Cameron
{"title":"Co-design and co-production of 'Tools for ageing well with traumatic brain injury'.","authors":"Christina L Ekegren, Candice McBain, Libby Callaway, Liz Gill, Grahame Simpson, Grainne Cruickshank, Mohit Arora, Ian D Cameron","doi":"10.1071/IB24125","DOIUrl":"https://doi.org/10.1071/IB24125","url":null,"abstract":"<p><p>Background Despite experiencing complex health needs, there are limited targeted resources to assist older adults with traumatic brain injury (TBI) to age well. This report aims to describe the co-design and co-production of a tailored resource designed with, and for, older people with TBI, their families/carers, and health professionals working with them. Methods A five-stage design-thinking process was followed, incorporating 'empathising' with older adults with TBI and their families/carers (stage 1); 'defining' health priorities/information needs (stage 2); 'ideating' the resource's content, structure, and design (stage 3); 'prototyping' (stage 4); and 'testing' (stage 5). Results 'Tools for ageing well with traumatic brain injury' was launched in September 2024, in the format of a printed manual and online web version with downloadable text resources and videos. The resource includes information to help older adults with TBI and their families/carers engage with health services, self-manage health conditions, navigate health care and funding systems, and advocate proactively for health care and support needs. Conclusions This study reinforced the value of co-design and co-production within a five-stage design-thinking process in developing a resource that had meaning and relevance for people with brain injury and their families/carers, helping them to proactively plan for ageing well with TBI.</p>","PeriodicalId":56329,"journal":{"name":"Brain Impairment","volume":"26 ","pages":""},"PeriodicalIF":1.1,"publicationDate":"2025-04-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144059683","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}
Benjamin D Diplock, Alexey Urusov, Alisa Torchia, Gary R Turner, Mary E Desrocher
{"title":"Psychological interventions for externalising behaviours following paediatric traumatic brain injury: a systematic review and clinical practice recommendations.","authors":"Benjamin D Diplock, Alexey Urusov, Alisa Torchia, Gary R Turner, Mary E Desrocher","doi":"10.1071/IB24092","DOIUrl":"https://doi.org/10.1071/IB24092","url":null,"abstract":"<p><p>Objective To identify and examine whether evidence-based psychological interventions reduce externalising behaviours in persons who sustained a traumatic brain injury (TBI) in childhood and adolescence. Methods This systematic review used the Preferred Reporting Items for Systematic Reviews and Meta-Analyses guidelines. Five electronic databases (i.e. MEDLINE, PsycINFO, PubMed, EMBASE and ERIC) were systematically searched, with publication dates ranging from 1946 to February 2025. Terms, such as 'TBI', 'externalising', 'aggression', and 'paediatric', were employed in the search. Results The overall searches returned 3551 articles. Of the total, 535 duplicates were excluded, and 2973 records were excluded through screening titles and abstracts. Seventy studies met preliminary established criteria. Of these, 10 studies met inclusion criteria; one (10%) was a nonrandomised study (quasi-experimental design), six (60%) were randomised controlled trials (RCTs) with one-group comparison and three (30%) were RCTs with two-group comparison. Conclusions Despite a limited number of studies, five preliminary clinical practice recommendations were developed. Specifically, this review has identified Family Problem-Solving Therapy and Teen Online Problem Solving as having potential efficacy for adolescence to emerging adulthood (moderate to severe TBI) and late childhood to adolescence (mild to severe TBI) age groups. Additional clinical and methodological implications, along with limitations and future directions, are considered.</p>","PeriodicalId":56329,"journal":{"name":"Brain Impairment","volume":"26 ","pages":""},"PeriodicalIF":1.1,"publicationDate":"2025-04-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144031278","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}
{"title":"Impact of communication modalities on autonomy and social participation of persons with locked-in syndrome.","authors":"Marie-Christine Rousseau, Margaux Hautin, Véronique Blandin, Frédéric Pellas, Pascal Auquier, Karine Baumstarck, Sébastien Lazzarotto","doi":"10.1071/IB24030","DOIUrl":"10.1071/IB24030","url":null,"abstract":"<p><p>Introduction Locked-in syndrome (LIS) is a complex neurological condition characterised by paralysis of all four limbs and anarthria. Persons with LIS may communicate via eye blinks/low technology Augmentative and Alternative Communication devices (low tech AAC devices) or may use high technology Augmentative and Alternative Communication devices (high tech AAC devices). Our three objectives were: (1) to describe the distribution of communication modalities used by persons with LIS, (2) to describe the satisfaction of persons with LIS with their communication modality and social participation, and (3) to compare the characteristics and social participation among high tech AAC devices users versus low tech AAC devices or eye blinking users. Methods The questionnaires were sent by e-mail to persons with LIS. Data collected were communication modality, examination of communication ability, satisfaction with the communication modality and contribution of the communication modality to social participation. Results Of the 53 participants, their mean age was 52years, 43% used low tech AAC devices, 43% used high tech AAC devices and 13% communicated via eye blinking. Communication ability was examined in only half the participants. Participants' satisfaction with their communication modality in terms of ergonomics, rapidity, adaptability and functionality were 80, 67, 36 and 47% respectively. Participants who used high tech AAC devices had significantly better e-mail and social network access, could more often initiate conversations and had longer communication durations. Conclusion The communication abilities of persons with LIS should be examined as quickly as possible and repeated regularly. High tech AAC devices should be rapidly and systematically proposed.</p>","PeriodicalId":56329,"journal":{"name":"Brain Impairment","volume":"26 ","pages":""},"PeriodicalIF":1.1,"publicationDate":"2025-03-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143736182","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}
{"title":"Do caregivers of traumatic brain injury survivors experience post-traumatic growth? A mixed-methods study exploring the positive experiences of informal caregivers.","authors":"Molly Hillyard, Ryan Westley, Jade Kettlewell","doi":"10.1071/IB24019","DOIUrl":"10.1071/IB24019","url":null,"abstract":"<p><p>Background There are currently 5.7million informal caregivers in the UK, with many experiencing psychological distress, compromised social functioning and poor quality of life. Improving the negative impact of caregiving has been a key focus of research in this population. However, there is limited research on the positive experiences of informal caregivers, particularly those caring for traumatic brain injury (TBI) survivors. This study aimed to explore whether informal TBI caregivers have positive experiences resulting from their role and investigate the possibility of post-traumatic growth (PTG). Methods Mixed-methods study. Quantitative data analysed using descriptive statistics. Qualitative data were analysed thematically. Data sets were synthesised and compared for agreement. Online semi-structured interviews were conducted with informal TBI caregivers, alongside a demographic questionnaire and validated PTG measure (Post-Traumatic Growth Inventory - Short Form, PTGI-SF). Results Ten TBI caregivers were recruited (n =10 male). The highest-scoring PTGI-SF domain across participants was 'personal strength' (mean=8.3; standard deviation, s.d.=1.5). The lowest-scoring domain was 'greater appreciation for life' (mean=7.1, s.d.=2.6). Six qualitative themes included: (1) deepened personal connections, (2) strengthened spiritual beliefs, (3) personal growth and resilience, (4) transformed life priorities and purpose, (5) improved coping mechanisms and (6) emergence of new opportunities and pathways. Findings revealed how caregivers adapted positively through caregiving experiences. Conclusions TBI caregivers appeared to experience PTG through caring. Future studies should employ mixed-methods to explore PTG in female TBI caregivers, adaptive coping strategies and the prevalence of occupational burden, facilitating the development of targeted interventions.</p>","PeriodicalId":56329,"journal":{"name":"Brain Impairment","volume":"26 ","pages":""},"PeriodicalIF":1.1,"publicationDate":"2025-03-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143558922","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}
Shannon Juengst, Brittany Wright, Leia Vos, Gabriel Rodriguez, Michael Conley, Lauren Terhorst
{"title":"Convergent, discriminant, and known-groups validity of the Behavioural Assessment Screening Tool (BAST) in chronic traumatic brain injury.","authors":"Shannon Juengst, Brittany Wright, Leia Vos, Gabriel Rodriguez, Michael Conley, Lauren Terhorst","doi":"10.1071/IB24064","DOIUrl":"10.1071/IB24064","url":null,"abstract":"<p><p>Background The Behavioural Assessment Screening Tool (BAST), which measures self-reported neurobehavioural symptoms experienced by adults with traumatic brain injury (TBI), was specifically developed as a self-reported measure for remote symptom reporting. Our aim was to assess the convergent, discriminant, and known-groups validity of the BAST among community-dwelling adults with TBI. Methods We assessed correlations and group differences with previously validated measures in two existing datasets (n =111, n =134). Other measures were the Patient Health Questionnaire-9 (depression), Generalized Anxiety Disorder-7 (anxiety), Positive and Negative Affect Schedule, Frontal Systems Behavior Scale (Executive Dysfunction, Apathy, Disinhibition), Modified Fatigue Impact Scale, Patient-Reported Outcomes Measurement Information System (Fatigue), Aggression Questionnaire (anger, hostility, physical and verbal aggression), and Alcohol Use Disorders Identification Test (alcohol misuse). Results BAST subscales had stronger correlations with measures of similar (|r |=0.602-0.828, P r |=0.364-0.589, P r |d =1.2-1.9) for known groups with moderate-severe depression, moderate-severe anxiety, fatigue, problematic disinhibited and frontal executive behaviours, and alcohol misuse. Results support the construct validity of the BAST subscales. Conclusion(s) The BAST demonstrated good convergent, discriminant, and known-groups validity, supporting its use for remote self-reported symptom reporting to improve chronic symptom monitoring in community-dwelling adults with TBI.</p>","PeriodicalId":56329,"journal":{"name":"Brain Impairment","volume":"26 ","pages":""},"PeriodicalIF":1.1,"publicationDate":"2025-02-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC12067585/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143365921","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}