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Background: There is a lack of evidence relating to cognitive‐communication difficulties following traumatic brain injury (TBI) sustained in older adulthood. A prominent area in which post‐TBI cognitive‐communication difficulties manifest is at the level of social communication. An investigation of social communication focusing on comparison of those injured in older and younger adulthood is a practical starting point for age‐related cognitive‐communication outcome comparison. Aims: The overall objective of this study was to explore the social communication of individuals who sustained severe TBI in an early period of older adulthood (50–70 years) compared to younger adulthood (18–40 years), as informed by self and close other reports. Methods & Procedures: This exploratory controlled group comparison study involved analysis of self‐reported and close other reported La Trobe Communication Questionnaire data for 22 adults with severe TBI (11 older at injury; 11 younger at injury) and 22 control participants (11 older; 11 younger). TBI participants were matched for injury variables and participant groups were matched for sex, age and education. Outcomes & Results: The close others of the older and younger adults with TBI reported them to have significantly more frequent difficulty with social communication than the close others of age‐matched control groups. Older adults with TBI reported significantly more frequent difficulty with social communication than uninjured older adults. In contrast, younger adults with TBI and uninjured younger adults reported a similar frequency of difficulty with social communication. No age‐based difference in the frequency of social communication difficulty was evident when comparing the self or close other reports of older and younger adults with TBI. Awareness of social communication difficulty, as indexed by comparing self and close other perceptions, showed a different pattern across the TBI groups. The older TBI group rated themselves as having significantly less frequent social communication difficulty than was perceived by their close others. In contrast, no statistically significant difference was evident between the self and close other social communication ratings of the younger TBI group. Conclusions and Implications: Where possible clinicians need to work with close communication partners to understand the nature and degree of social communication difficulty following severe TBI. This may be especially important when working with people who sustain TBI in older adulthood if future research shows that this population have greater difficulty with self‐awareness of social communication difficulty. What this paper adds: What is already known on the subject: Cognitive‐communication difficulties are a common consequence of traumatic brain injury (TBI) that can have long‐term impact on everyday functioning. These challenges have primarily been investigated in individuals who sustained TBI in younger adulthood. What this paper adds to existing knowledge: Individuals who sustain severe TBI in early older adulthood have a higher frequency of reported social communication difficulty to non‐injured adults of a similar age, albeit they may underreport such difficulties potentially in the context of reduced self‐awareness. What are the potential or actual clinical implications of this work?: Social communication difficulty is an issue for people who sustain severe TBI in early older adulthood. However, a poorer overall social communication outcome in comparison to those injured in younger adulthood should not be assumed. Clinical service delivery for these challenges is most optimally delivered in a collaborative manner with the individual and their close others. Future research is required to investigate the identified trends from this study. [ABSTRACT FROM AUTHOR]

AbstractPurposeMethodsResultsConclusions\nIMPLICATIONS FOR REHABILITATIONPeople with acquired neurological disability have the right to quality disability support, yet there is still limited user insights shaping disability services. This research aimed to develop a comprehensive understanding of quality support for adults with acquired neurological disability based on lived experiences.Using a constructivist grounded theory approach, this project engaged 12 adults with acquired neurological disability, 12 support workers, and 10 close others in individual interviews. Each perspective was analysed independently and subsequently merged to construct a holistic model of quality support grounded in lived experience.The model of quality support encompasses interconnected themes spanning dyadic relationships, support worker competency, team dynamics, provider practices, and sector-wide considerations. Key elements include recognising the individual’s expertise in their support needs, nurturing effective support relationships, fostering a capable support team, and upholding sector accountability. Authentic choice and personal agency emerged as paramount factors in achieving quality support.The findings align with disability rights and individualised funding principles, emphasising the centrality of people with lived experience in shaping support services. The research underscores the need to prioritise authentic choice and individual empowerment, offering valuable insights for both practice and policy development in the disability support sector.The perspective of people with lived experience is paramount to designing quality disability support services aligned with people’s needs and preferences.The person with disability needs to be at the centre of all decisions regarding their support and needs to be supported to lead their supports.Quality disability support relies primarily on the interaction between the person with disability and their support worker, and therefore quality support relationships need to be developed and maintained.The perspective of people with lived experience is paramount to designing quality disability support services aligned with people’s needs and preferences.The person with disability needs to be at the centre of all decisions regarding their support and needs to be supported to lead their supports.Quality disability support relies primarily on the interaction between the person with disability and their support worker, and therefore quality support relationships need to be developed and maintained. [ABSTRACT FROM AUTHOR]

Interpersonal relationships are frequently subject to challenges and changes following the onset of aphasia and have strong ties with psychosocial and health outcomes. In order to be able to effectively support people with aphasia, a greater understanding of how challenges and changes evolve over time is needed. The current research sought to understand the lived experience of interpersonal relationships for people with aphasia through longitudinal enquiry over the first year following the onset of stroke. Seven participants with aphasia (6 male, 1 female) with aphasia ranging from mild to severe were recruited through inpatient rehabilitation units. Four were married and three lived alone. They were interviewed on four occasions beginning around the time of their discharge home and lasting for around one year following their return home. Researchers adopted a constructivist grounded theory approach and data were transcribed, coded and analysed using a constant comparative method. This research provides novel insights into the progression of interpersonal relationships over time following the onset of aphasia. Early on, participants retreated into a core group of close others characterised as their 'inner circle'. During early stages, inner circle relationships were subject to challenges and changes as people learned to live with aphasia. As they felt ready, people with aphasia began to reconnect with friends. This process was often mediated by spouses and in the early phases of recovery was limited and challenging. Reconnection with friends brought with it varying degrees of connectedness, however for those without strong inner circle relationships, marked isolation occurred at all points throughout the year following discharge. Relationships are frequently impacted by the presence of aphasia and are subject to changes and challenges. This research highlights phases which people with aphasia may move through as they adjust to their new social worlds. These findings have clear implications for the development and timing of interventions and emphasise the need to support those most at risk. [ABSTRACT FROM AUTHOR]

Purpose: Close others of people with acquired neurological disability often play a key role in supporting their relative to get necessary support, and therefore have valuable insight into what facilitates quality support. Situated within a series of studies aiming to build a holistic model of quality support grounded in the lived experience of adults with acquired neurological disability, support workers and close others, this study explores the perspective of close others. Method: Following grounded theory methodology, ten close others participated. In-depth interview data was analyzed using constructivist grounded theory methods to develop themes and explore relationships between the themes. Results: A multi-level system model characterizing quality support at three levels was developed. Key factors at the dyadic level included the support worker recognizing the person as an individual and the dyad working well together. At the team level, it was important for the support team, close others, and providers to engage constructively together. At the sector level, building quality systems to develop the workforce emerged as essential. Conclusions: The findings complement the perspective of people with disability and support the key notion of quality support honouring the person's autonomy and highlight the need to raise accountability in the disability sector. [ABSTRACT FROM AUTHOR]

Purpose: Quality disability support is fundamental to the lives of many adults with acquired neurological disability. However, little is known about the factors that influence the quality of paid support. This study is part of a larger project to develop a holistic understanding of quality support, grounded in the experience of people with acquired neurological disability, close others, and disability support workers. The current study focuses on the support worker perspective. Methods: Following constructivist grounded theory methodology, interviews were conducted with 12 support workers. Grounded theory analysis was followed to develop themes and subthemes and build a model of quality support. Results: Five key themes, with fifteen subthemes emerged to depict factors influencing the quality of support. The five themes are: being the right person for the role, delivering quality support in practice, working well together, maintaining and improving quality support, and considering the broader context. Findings emphasise the importance of the support worker recognising the person as an individual and respecting their autonomy. Conclusions: Critical to quality support is centring the needs and preferences of people with disability, improving support worker working conditions and supporting people with disability and support workers to build effective, balanced working relationships. [ABSTRACT FROM AUTHOR]

Objective: This study explored non-specialist audiological clinical practice in the context of traumatic brain injury (TBI), and whether such practices incorporated considerations of TBI-related complexities pertaining to identification, diagnosis and management of associated auditory and vestibular disturbances. Design: A cross-sectional online survey exploring clinical practice, TBI-related training and information provision was distributed to audiologists across Australia via Audiology Australia and social media. Fifty audiologists, 80% female and 20% male, participated in this study. Years of professional practice ranged from new graduate to more than 20 years of experience. Results: Clear gaps of accuracy in knowledge and practice across all survey domains relating to the identification, diagnosis and management of patients with auditory and/or vestibular deficits following TBI were evident. Further, of the surveyed audiologists working in auditory and vestibular settings, 91% and 86%, respectively, reported not receiving professional development for the diagnosis and management of post-traumatic audio-vestibular deficits. Conclusion: Inadequate resources, equipment availability and TBI-related training may have contributed to the gaps in service provision, influencing audiological management of patients with TBI. A tailored TBI approach to identification, diagnosis and management of post-traumatic auditory and vestibular disturbances is needed. [ABSTRACT FROM AUTHOR]

The purpose of the study was to explore the experiences of an individual navigating life in the first year after stroke, with attention to the influence of health professionals on adjustment. In-depth interviews were completed at regular intervals with an individual in rural Australia. This longitudinal approach supported the exploration of views over time. Interview transcripts were coded and analysed using strategies consistent with constructivist grounded theory methods. Findings are presented as an instrumental case study. The experience of stroke was one of adjustment to a new reality and of an altered and evolving concept of self: captured within the themes of fragmentation, loss, and reconstruction. Self-efficacy emerged as a driver in the adjustment process. Interactions with health professionals influenced adjustment and impacted on conceptualisations of self and self-efficacy. Adjustment to stroke necessitated a reconceptualization of self. Relationships and interactions with others emerged as potential facilitators. For health professionals working with people after stroke, knowledge of the adjustment process and attention to practices that affirm personhood and enhance self-efficacy have the potential to facilitate long term outcomes. Processes linked to adjustment are represented visually to guide conceptual understandings and facilitative actions. All interactions with health professionals, including casual or ad hoc interactions, have the potential to influence adjustment after stroke. Health professionals who interact in ways that recognise personhood may have an especially positive influence on processes linked to adjustment. Giving time to listen to personal narratives and reflections may assist with sense-making and support the process of reconceptualising self after stroke. Through bidirectional sharing of experience and ideas, health professionals can facilitate the experience of self-efficacy. [ABSTRACT FROM AUTHOR]

Adults with acquired neurological disability often require paid disability support to live an ordinary life. However, little is known about what facilitates quality support. This study aims to explore the lived experience of people with acquired neurological disability to develop an understanding of the factors that influence the quality of support. Guided by constructivist grounded theory, in-depth qualitative interviews were conducted with 12 adults with acquired neurological disability. Data analysis followed an iterative process to develop themes and subthemes and explore relations between themes to build a model of quality support. Nine key factors emerged in the dyadic space, with the support worker recognising the person as an individual as foundational to quality support. Beyond the dyadic space, three broader contextual factors were identified as influential on the quality of support by mechanism of facilitating or constraining the person with disability's choice. Finally, the provision of quality support was characterised by the person feeling in control. Findings support the rights of people with disability to quality, individualised support, and a need for interventions to better prepare the disability workforce to deliver support in line with the needs and preferences of people with acquired neurological disability. To provide quality support, disability support workers need to recognise the person with disability as an individual and the expert in their support needs and preferences. The quality of paid disability support is primarily determined by the way the person with disability and support worker work together in the dyadic space. Ensuring people with acquired neurological disability have authentic choice over their support arrangements and daily living is critical to facilitate quality support, and in turn help the person with disability to feel in control. [ABSTRACT FROM AUTHOR]

To assess the change in individual outcomes for people with disability and complex needs after moving into newly built, individualised apartments in the community. People with disability (neurological disorder or cerebral palsy) and complex needs (n = 15, aged 18–65 years) completed quantitative self-report measures over two time-points (pre-move and 6–24 months post-move). Pre-move living arrangements included group homes, residential aged care, private rentals, and living with parents. Post-move living arrangements were individualised apartments built for people with disability. Health, wellbeing, community integration, and support needs were compared across pre- and post-move timepoints. Paired sample t-tests showed significant improvements consistent with large effects in wellbeing (p = 0.031, Eta2=0.29) and community integration (p = 0.008, Eta2=0.41), particularly home integration, and a trend towards improved health (p = 0.077, Eta2=0.21). A Wilcoxon signed rank test demonstrated a trend towards reduced support needs (z= −1.941, p = 0.052) consistent with a medium effect (r = 0.35) and an average decrease of 2.4 support hours per participant per day. Well-located housing with appropriate design, technology and support provision makes a positive contribution to wellbeing, community integration, and health for people with complex disability. People with disability who move into individualised apartments experience significant positive change in health, wellbeing, and participation. Findings highlight the benefits of housing that foster independence and enable personal choice and control. Evidence suggests that investment in appropriately designed and well-located housing has positive outcomes for people with disability. Evidence collected within this outcome framework has the potential to ensure models of housing and support that are responsive to the diverse and changing needs of people with disability. [ABSTRACT FROM AUTHOR]

Background and Purpose: Psychosocial difficulties, including changed relationships are among the most pervasive and concerning issues following stroke. This study aimed to collate and thematically analyse qualitative literature describing the experience of close personal relationships from the perspective of stroke survivors. Method: Using a scoping review methodology, four databases (CINAHL/EBSCO, MEDLINE/Pubmed, Embase, Psychinfo) were systematically searched, yielding 3100 citations. Following exclusion of duplicates and screening against inclusion criteria at title/abstract and full text levels, 53 articles were included in the review. Data were charted and thematically analysed. Results: While research has increased since 2000, longitudinal designs are few. Four overarching themes and 12 subthemes were identified. 'Social disruption' described changing social worlds, lost social opportunities and shrinking networks. 'Changed relationships' included changed family and spousal relationships and changed parenting relationships. The third theme 'relationships help' highlighted positive aspects including belonging, support and a life worth living. The final theme was 'coping with an altered social world' and described adjustment and emotional responses. Conclusions: Relationships are an important aspect of life post stroke but are subject to changes and challenges. This article brings together a breadth of qualitative data to describe lived experiences. Further research, in particular, longitudinal research is required. [ABSTRACT FROM AUTHOR]

Background: For people with acquired neurological disabilities and complex needs, general practitioners (GPs) play an important role in health management and early intervention for the prevention of comorbidities and health complications. People with disability are a vulnerable group who need and have the right to, quality general practice services. It is therefore important to understand the health needs and service use of this group. The aim of this review was to identify the healthcare needs and general practice utilization of people with acquired neurological disabilities and complex needs. Methods: A scoping review methodological framework was utilized. Six databases (MEDLINE, PsycInfo, CINAHL, Scopus, Embase and the Cochrane Library) were searched. Articles were included if they reported on general practice service utilization of people with acquired neurological disabilities and complex needs aged between 18 and 65. Articles were required to be peer‐reviewed, written in English and published between 2010 and 2021. Results: Thirty‐one articles were included in the review. Studies originated from Canada (9), the United States (8), Australia (4), Switzerland (4), the United Kingdom (2), England (1), Norway (1), France (1) and Denmark (1). For many people, GPs were the main healthcare provider. People with disability consult multiple healthcare providers and navigate complex healthcare systems. Commonly presented healthcare needs were bladder, bowel and skin problems, pain and chronic pain, medication needs and mental health concerns. Conclusions: People with acquired neurological disabilities and complex needs were vulnerable to receiving suboptimal healthcare. The literature highlighted issues regarding the accessibility of services, the fragmentation of health services and inadequate preventative care. GPs were challenged to offer adequate disability‐related expertise and to meet the mental health needs of people with disability within time constraints. Patient and Public Involvement: This manuscript was prepared in collaboration with a GP, who is one of the authors. A person with lived experience of acquired neurological disability was engaged to check the alignment of the findings with their personal experience and provide feedback. [ABSTRACT FROM AUTHOR]

Purpose: Although traumatic brain injury (TBI) has a disproportionate impact on older adults, there has been limited inclusion of these individuals in post-TBI cognitive-communication research. This study was undertaken to compare demographic and injury characteristics, speech-language pathology input, and broad outcomes for younger and older adults admitted to inpatient rehabilitation following TBI. Method: A retrospective audit of first occasion adult TBI admissions in 2019 to inpatient rehabilitation in an Australian metropolitan subacute hospital was conducted via medical record data. Admissions were located using International Statistical Classification of Diseases, Tenth Revision, Australian Modification (ICD-10-AM) coding that aligned with TBI. Comparisons were made for younger (18–54 years) and older (≥ 55 years) adults. Results: A total of 114 admissions (51.75% older adults) were included. Patient age ranged between 18 and 90 years. Falls caused TBI in the majority of older adults, whereas transport-related accidents were the most common cause for younger adults. Age-based trends for intracranial injury were observed. Cognitive-communication difficulties were the most common speech-language pathology diagnosis with no significant difference in prevalence between younger and older adults. Age group was not significantly associated with length of stay or discharge home. Conclusions: The implications of injury-related trends for older adults on post TBI cognitive-communication are poorly understood. This lack of information is problematic given the frequency of cognitive-communication difficulties in this population. Research into cognitive-communication following new onset TBI in older adults is crucial to support rehabilitation service provision and improve outcomes for older adults. [ABSTRACT FROM AUTHOR]

This paper describes the development and preliminary evaluation of a novel participant‐led video (PLV) intervention to support people with disability (PWD) and cognitive and communication impairments to communicate their needs and preferences to their disability support workers. The PLV intervention was designed following a scoping literature review and workshop with PWD and close others. Subsequently, it was piloted with five primary participants with acquired brain injury and cognitive and communication impairments, five close other supporters and five facilitators. An independent mixed methods evaluation of the pilot was conducted with participants, close others and facilitators. All pilot evaluation participants reported high levels of satisfaction with the PLV intervention (mean ratings: primary participants 4.5/5.0; supporters 5.0/5.0; facilitators 4.8/5.0). When primary participants and their supporters were asked to rate how likely they were to recommend the PLV intervention, responses were extremely positive with the mean rating exceeding eight on a 10‐point scale. Qualitative analysis of interview data revealed the PLV to be a person‐centred experience for primary participants that was structured around sense of self and included having a voice and taking control in directing their lives, personal growth through participation and feeling validated through the experience. The production and use of PLV training resources has much potential to improve the delivery of support and maximise support outcomes by enabling people with cognitive and communication impairments to have choice and control, set their own goals and direct their supports. Further research is required with a larger sample size and longitudinal evaluation of participant outcomes. [ABSTRACT FROM AUTHOR]

A rights perspective proposes supported decision-making as an alternative to substitute decision-making. However, evidence about supported decision-making practice is limited. Our aim was to build evidence about building the capacity of decision supporters. Eighteen parents of people with intellectual disabilities were trained in decision support using the La Trobe Support for Decision-making Practice Framework. Data from repeated semi-structured interviews and mentoring sessions were used to capture parental reflections on the value of training. The training acted as a catalyst for parent self-reflection and the Framework prompted them to adopt a more deliberative approach to supporting decision-making. Some parents perceived increased confidence of their adult offspring in expressing preferences resulting from their own changed approach. This study demonstrates the efficacy of this Framework and evidence-based training in building the capacity of parental decision supporters to be consistent with the rights paradigm. The La Trobe Support for Decision-making Practice Framework is an evidence-based approach to decision support practice with an accompanying set of free online resources which can be used by individual practitioners or programs to inform their practice and build the capacity of supporters. Parents of adults with intellectual disabilities value training in the La Trobe Support for Decision-making Practice Framework, which they consider helps to develop their decision support skills and self-reflection. Parents also value individual mentoring following training to assist them to apply the principles of the practice framework to the everyday support for decision-making they provide to their adult son or daughter. Training in support practice should be accompanied by individual mentoring or other strategies to assist parents of adults with intellectual disabilities to discuss and solve the difficult issues they confront in providing decision support more aligned to the rights paradigm. [ABSTRACT FROM AUTHOR]

Supporting participation in decision making is complex, dynamic and multifactorial. The aim of this study was to understand more about the difficulties parents of adults with intellectual disabilities experienced in providing decision support and their strategies for resolving them. Participants were 23 parents who regularly provided decision support for their adult with intellectual disabilities. Most of the adults (19) lived at home. Parents participated in semi-structured interviews at least three times during the study. We applied a social-constructionist theoretical perspective and a template approach for analysis. Findings fell into three core categories, making the right decision, factors that made decision support difficult, and strategies to manage uncertainty, which included controlling, influencing, expanding the adult's horizons and enabling risk. The knowledge gained will help in building the capacity of parents to provide decision support that better understands and respects the will and preferences of the person they support. [ABSTRACT FROM AUTHOR]

Australian Audiologists' perspectives on standard non-specialized clinical practice in the context of Traumatic Brain Injury (TBI) were examined, including the perceived barriers to optimal service provision. A qualitative research design utilizing semi-structured interviews was conducted using purposive sampling. Nine participants were interviewed about their understanding of the impact of TBI on hearing and balance; identification, diagnosis and management of auditory and vestibular dysfunction following TBI; barriers to service delivery; training relating to complex clients (i.e., TBI); and awareness of referral pathways. Three major themes, each with subthemes, were evident in the data. The major themes reflected general considerations of audiological professional culture and specific issues related to knowledge of TBI and clinical practice with patients. Analysis revealed that professional culture seemed to act as a contextual barrier and interacted with the perceived lack of TBI related knowledge to hinder optimal clinical practice in this patient population. Application of the biopsychosocial model, including interdisciplinary care in the management of patients with TBI, is needed. An improvement in theoretical and practical knowledge encompassing the wide-ranging effects of TBI is critical for the optimal audiological service delivery. [ABSTRACT FROM AUTHOR]

Theoretically, individualised funding schemes empower people with disability (PWD) to choose high quality support services in line with their needs and preferences. Given the importance of support, the aim of this scoping review was to understand the factors that influence the quality of paid disability support for adults with acquired neurological disability. A comprehensive scoping review of the published literature from 2009–2019 was conducted on five databases: Medline, CINAHL, Embase, PsycINFO and Scopus. Of the 3391 records retrieved, 16 qualitative articles were eligible for review. Thematic synthesis of the findings revealed six key interrelated themes: (1) choice and control, (2) individualised support, (3) disability support worker (DSW) qualities, (4) DSW competence, (5) PWD – DSW relationship, and (6) accessing consistent support. The themes depict factors influencing the quality of paid disability support from the perspective of PWD, close others and DSWs. Although the evidence base is sparse, the factors identified were in line with international rights legislation and policy ideals. The findings can provide insights to PWD hiring and managing support, and facilitate the delivery of quality disability support. Further research is required to understand the interactions between the factors and how to optimise support in practice. The quality of paid disability support is determined by a multitude of interrelated factors influenced by the disability support worker's qualities and competencies, the interaction between the person with disability and the disability support worker, as well as external contextual factors. Optimising choice and control for adults with acquired neurological disability and providing individualised support should be a significant focus for disability support workers. Training modules for disability support workers can be informed by five of the identified themes: (1) choice and control, (2) individualised support, (3) DSW qualities, (4) DSW competence and (5) the relationship between PWD and DSWs. [ABSTRACT FROM AUTHOR]

Objective: A positive therapeutic (or working) alliance has been associated with better outcomes for clients in the psychotherapeutic and traumatic brain injury (TBI) rehabilitation literature. The aim of this pilot study was to gain an understanding of the therapeutic alliance in community rehabilitation from the perspectives of adults with TBI and their close others who have completed a community rehabilitation programme. Method: This study used a constructivist, qualitative methodology which applied grounded theory analysis techniques. Using purposeful sampling, three pairs of participants (adults with TBI and close others) who had finished a community rehabilitation programme completed separate in-depth interviews which were transcribed verbatim and progressively analysed using a process of constant comparison. Results: A preliminary framework illustrating participants' experience of a therapeutic alliance was generated, comprising three interconnected themes: being recognised as an individual, working together and feeling personally connected. All participants viewed being able to work together as important in their experience of community rehabilitation and described features that helped and hindered the alliance. Conclusion: These pilot study results demonstrate the importance of the therapeutic alliance to the rehabilitation experience of individuals with TBI and those close to them. [ABSTRACT FROM AUTHOR]

Objectives: Building upon the findings of an earlier study that explored the experience and impact of narrative storytelling following acquired brain injury (ABI), this study sought to examine the engagement of storytelling facilitators with storytellers. Methods: Transcripts of in-depth interviews conducted with six storytelling facilitators were analysed drawing upon content analysis. The analysis included a process of mapping previously analysed data (D'Cruz et al., 2020b) to a humanising values framework (Galvin & Todres, 2013; Todres et al., 2009). Results: The findings of this study provide insights into how facilitators engaged in humanising practice within the context of a storytelling advocacy programme. The facilitator participants ranged in years of facilitation experience from 1 to 11 years, with a mix of professional backgrounds, including health care (3), journalism (1) and community development (2). Analysed facilitator data mapped to each of the eight dimensions of the framework (insiderness, agency, uniqueness, togetherness, sense-making, personal journey, sense of place and embodiment), with a breadth of codes represented in each dimension, revealing the depth of humanisation. Conclusions: This study extends our understanding of approaches to engagement with adults living with ABI, demonstrating the humanising potential of storytelling. Furthermore, the findings help us to think about what it means to be human, guiding us to find ways to better partner with and support adults living with brain injury. [ABSTRACT FROM AUTHOR]

The processes by which working alliances develop in stroke rehabilitation are not well understood. The aim of this study was to explore the ways in which experienced allied health clinicians establish and maintain alliances with people with stroke-related communication impairment, and to identify factors that may influence the strength of these alliances. In-depth interviews were completed with 11 clinicians from the disciplines of occupational therapy, speech-language pathology and physiotherapy. Interview transcripts were coded and analysed using strategies consistent with constructivist grounded theory. Participants described processes that were captured by the themes of enabling interaction, being responsive, building relational capital and building credibility. Practices that supported communication and emphasized responding, both within an interaction and over time, aligned with examples of strong alliances. Professional credibility and relational practices such as everyday conversations and the use of humour were viewed as important. Difficulty accessing a shared mode of communication due to stroke-related communication impairment altered relational processes and influenced perceptions of the alliance, although examples of strong alliances were present. In this study, reflections on challenging alliances highlighted potentially helpful practices. A responsive approach to rehabilitation, supported by reflective practice, may assist clinicians to better navigate their working alliances with this population. [ABSTRACT FROM AUTHOR]

To establish the frequency of occurrence of peripheral vestibular dysfunction in adults who have sustained non-blast-related traumatic brain injury (TBI) as measured through the standard audiological vestibular test battery. A systematic search of English language literature using MEDLINE, EMBASE, PsycINFO, CINAHL, hand-searching of reference lists and SCOPUS author search was conducted from January 1, 1990 to May 14, 2019. Twenty-three out of 417 originally identified articles were retained. TBI and peripheral vestibular findings were extracted and synthesised. Quality appraisal using the Oxford Centre for Evidence-Based Medicine (OCEBM) revealed Level 2b as the highest level of evidence. None of the primary studies explored vestibular deficits in acute settings, with data collected from tertiary institutions and in 20 of 23 studies retrospectively. Although retrospective studies provided important data, they fail to control for numerous threats to internal validity. BPPV was the most frequently identified peripheral vestibular deficit following TBI, diagnosed in 39.7% of 239 participants across six of 23 studies. Further prospective longitudinal research into comparative recovery trajectories in patients across TBI severity levels would provide additional information to guide clinical diagnosis, prognosis and management of this patient population. [ABSTRACT FROM AUTHOR]

A single case design (AB with follow up) was used to determine the effect of a combined visual scanning and verbal cuing intervention technique in improving facial affect recognition after traumatic brain injury (TBI). A 35-year-old male (BR) with impaired ability to recognize facial emotions as a result of severe TBI participated in the study over a 3-month duration. BR's mean accuracy across six universal static facial expressions of emotion improved significantly during intervention and was maintained at follow up. BR was most impaired in labelling negative (sad, angry, disgusted, anxious) versus positive facial expressions (surprised, happy). BR's accuracy to negative facial affect significantly improved during intervention. No further improvement was possible for positive expressions because a ceiling effect was observed at baseline. Overall BR's mean response times across emotions was reduced at baseline but increased significantly during intervention. This was also recorded for both positive and negative expressions, respectively. This novel combined intervention has potential to improve facial affect recognition after TBI. Further evaluation using a multiple-baseline design is recommended. Additional research is needed to determine whether improved facial affect recognition following training translates to improvements in social function and communication in people with TBI. [ABSTRACT FROM AUTHOR]

The visual scanpath to emotional facial expressions was recorded in BR, a 35-year-old male with chronic severe traumatic brain injury (TBI), both before and after he underwent intervention. The novel intervention paradigm combined visual scanpath training with verbal feedback and was implemented over a 3-month period using a single case design (AB) with one follow up session. At baseline BR's scanpath was restricted, characterised by gaze allocation primarily to salient facial features on the right side of the face stimulus. Following intervention his visual scanpath became more lateralised, although he continued to demonstrate an attentional bias to the right side of the face stimulus. This study is the first to demonstrate change in both the pattern and the position of the visual scanpath to emotional faces following intervention in a person with chronic severe TBI. In addition, these findings extend upon our previous work to suggest that modification of the visual scanpath through targeted facial feature training can support improved facial recognition performance in a person with severe TBI. [ABSTRACT FROM AUTHOR]

Qualitative methodology is key to understanding the lived experience of people with acquired brain injury (ABI). However, as demonstrated during the global pandemic (COVID-19), face-to-face interviewing is not always viable. This lack of availability has been particularly relevant for people with disability who are at increased risk of contracting the virus and experiencing poorer outcomes. Fortunately, advancing technologies provide increasing opportunities for communicating online, thus it is plausible for qualitative disability researchers to adapt to remote interviewing. People with ABI often experience varying degrees of cognitive and communication impairments and therefore require specific considerations in the planning of research projects. In this paper, we examine learnings from existing literature around online qualitative research, specifically for videoconference, focus groups and email-interviewing methods. The key aim is to map out the practical, ethical and methodological considerations when adapting research to an online environment. As interviewing people with ABI online has received little attention in the literature, learnings from broader disability populations and the general population inform much of the considerations. Thus, the suggestions for practice are likely to be relevant to a broader population, but specific implications for people with ABI are discussed. Overall, we propose that it is viable, and sometimes preferable, to utilize online interview techniques but researchers must take care to consider the practical, ethical and methodological implications of doing so. [ABSTRACT FROM AUTHOR]

Background: Older adults are a peak incidence group for traumatic brain injury (TBI). However, empirical evidence on TBI in older adults is often limited to extrapolated findings from studies involving younger adults. While cognitive‐communication deficits are an established consequence of TBI with substantial impact on social outcome for younger adults, little is known about the nature of cognitive‐communication changes experienced by older adults following a new‐onset TBI. In order to inform evidence‐based service delivery and support older adults who sustain TBI, it is important to understand how these difficulties manifest in older adults. Aims: To review the empirical literature to determine the nature and breadth of research that has addressed the influence of older age on cognitive‐communication outcomes following TBI sustained in older adulthood. Methods & Procedures: A scoping review framework was used. Five electronic databases (Medline, PsycINFO, Embase, CINAHL and Scopus) were searched to locate peer‐reviewed studies addressing cognitive‐communication following TBI sustained at ≥ 55 years. Given the absence of dedicated investigations within the search yield, studies were included where at least 30% of participants were aged ≥ 55 years at injury, and age was a stated focus of the investigation. Outcomes & Results: A total of 2468 unique records were identified and reduced to 225 after title and abstract screening. Full‐text review revealed only three studies that met the criteria. Collectively these studies included adults aged 55–93 years at injury. Two studies focused on age as a predictor for acute cognitive‐communication difficulty, and one on the impact of age on facial emotion recognition in the chronic stages of injury. None of the studies had a dedicated focus on cognitive‐communication outcomes for older adults who sustained a TBI within the defined period of older adulthood. Conclusions & Implications: This scoping review produced limited results and insufficient evidence to inform rehabilitation for older adults. Indeed, very little is known about cognitive‐communication outcomes for older adults who sustain a TBI. This review highlights the need, in the context of an ageing population, for research within this area to be prioritized. What this paper addsWhat is already known on the subjectEmpirical evidence to support the management of post‐TBI cognitive‐communication difficulties in adults predominantly stems from studies with young adults. However, the broader TBI literature suggests that outcome for older adults requires specific consideration due to its distinct nature and occurrence during a stage of life when there is the potential for subtle change to the processes of cognition and communication as part of typical ageing.What this paper adds to existing knowledgeThis scoping review identifies that research related to cognitive‐communication outcomes for older adults who have sustained a TBI is very much in its infancy. Overarching statements about post‐TBI cognitive‐communication outcomes for older adults cannot be drawn, nor can it be determined if outcomes for older adults differ from younger adults.What are the potential or actual clinical implications of this work?The lack of research in this area means that tangible guidance cannot be provided to clinicians working with older adults following TBI to support evidence‐based practice for cognitive‐communication. This scoping review strongly supports the need for further research in this area. [ABSTRACT FROM AUTHOR]

As part of a larger study exploring narrative storytelling, this paper focuses upon the experiences of eight adults with ABI who had participated in storytelling workshops facilitated by an advocacy organization. Following participation in the storytelling workshops, each storyteller was interviewed twice, with three shorter interviews conducted with one participant with significant communication challenges. In total, 25 interview transcripts (17 interviews plus eight transcripts of produced personal narratives) were analysed using constructivist grounded theory methods. Data analysis produced two main themes and sub-themes; (1) Sharing and helping (feeling heard & releasing emotions) and, (2) Re-visiting my story (reflecting and learning). The themes capture insights into the process of storytelling and reveal the therapeutic potential of narrative storytelling when coupled with an altruistic opportunity to help others through story sharing. This study contributes to an emerging area of research and practice supporting positive identity growth following ABI. The findings present substantial implications for goal setting and meaningful productive engagement in brain injury rehabilitation. [ABSTRACT FROM AUTHOR]

Relationships make important contributions to wellbeing and maintenance of self-worth. For those who sustain traumatic brain injury (TBI), life is frequently characterized by declining interpersonal relationships. The aim of this study was to understand the post-injury experience of friendship from the perspective of adults with severe TBI. Participants were 23 adults who had sustained severe TBI on average 10 years earlier; the majority was between 25 and 45 years old. The experience of friendship was explored using a convergent mixed methods design (quantitative self-report measures and in-depth interviews). Qualitative analysis of interview transcripts employed open and focussed coding to reveal themes and categories. Participants nominated on average 3.35 (SD 2.19) friends. When paid carers and family members were excluded, the mean dropped to 1.52 (SD 1.38). Exploratory correlations between number of friends and quality of life, depression and strong-tie support revealed significant associations of moderate to large effects. The post-injury experience of friendship was broadly conceptualized as "going downhill" with four overlapping phases: losing contact, being misunderstood, wanting to share and hanging on. Participants' stories illustrated how rehabilitation can focus on friendship by supporting established relationships and facilitating access to activities that afford interpersonal encounters and opportunities to share experiences. [ABSTRACT FROM AUTHOR]

Following traumatic brain injury (TBI), participating in education often provides a pathway for returning to a student's pre-injury life. In this paper, we explore themes related to adjustment and identity that emerged from students' reflections about their study journey. The data for this project are drawn from a longitudinal, predominantly qualitative investigation. Twelve students (aged: 17-32 years) completed up to three in-depth interviews over a period of 4-15 months, capturing a total of 30 time points. Data were analysed using grounded theory methods. A significant theme of "Is it Me or is it the Injury?" emerged from the context of students' descriptions of self, "Me" and thoughts about their injury, "The Injury." This emergent theme was indicative of the complex processes involved in adjusting and reshaping identity that arose from students' participation in education. The concepts identified in this research suggest that clinicians and educators must adopt a comprehensive, holistic and flexible approach to supporting students that can be adapted to reflect the individual and dynamic processes involved. [ABSTRACT FROM AUTHOR]

Purpose: At least 5% of people in Australia and the USA have cognitive impairment and require support for decision-making. This paper details a research program whereby an evidence-based Support for Decision Making Practice Framework has been developed for those who support people with cognitive disabilities to make their own decisions across life domains. Methods: The La Trobe framework was derived from a research program modeled on the Medical Research Council four-phase approach to development and evaluation of complex interventions. We completed phase one (development) by: (1) systematically reviewing peer-reviewed literature; and (2) undertaking qualitative exploration of the experience of support for decision-making from the perspectives of people with cognitive disabilities and their supporters through seven grounded theory studies. Results of phase two (feasibility and piloting) involving direct support workers and health professionals supported phase three (evaluation) and four (implementation), currently underway. Results: The framework outlines the steps, principles, and strategies involved in support for decision-making. It focuses on understanding the will and preferences of people with cognitive disabilities and guides those who provide support including families, support workers, guardians, and health professionals. Conclusions: This framework applies across diverse contemporary contexts and is the first evidence-based guide to support for decision-making. Support for decision-making is essential to maximise the participation of people with cognitive disability in decisions about their lives. Research has shown that support for decision making is a complex multifaceted process comprising multiple overlapping steps, delivered through individually tailored strategies and informed by practice principles. The La Trobe practice framework provides an evidence-based guide for engaging in effective support for decision-making with people with cognitive disability. [ABSTRACT FROM AUTHOR]

Although narrative storytelling has been found to assist identity construction, there is little direct research regarding its application in rehabilitation following traumatic brain injury (TBI). The aim of this review was to identify published evidence on the use of personal narrative approaches in rehabilitation following TBI and to synthesise the findings across this literature. A systematic search of four databases was conducted in December 2016. No limit was set on the start date of the search. Personal narrative approaches were defined as direct client participation in sharing personal stories using written, spoken or visual methods. The search retrieved 12 qualitative research articles on the use of personal narrative approaches in TBI rehabilitation. Thematic synthesis of the narrative data and authors' reported findings of the 12 articles yielded an overall theme of building a strengths-based identity and four sub-themes: 1) expressing and communicating to others; 2) feeling validated by the act of someone listening; 3) reflecting and learning about oneself; and 4) being productive. The findings of this review support the use of personal narrative approaches in addressing loss of identity following TBI. Healthcare professionals and the community are encouraged to seek opportunities for survivors of TBI to share their stories. [ABSTRACT FROM AUTHOR]

As part of a larger study exploring narrative storytelling, this paper focuses upon the experiences of eight adults with ABI who had participated in storytelling workshops facilitated by an advocacy organization. Following participation in the storytelling workshops, each storyteller was interviewed twice, with three shorter interviews conducted with one participant with significant communication challenges. In total, 25 interview transcripts (17 interviews plus eight transcripts of produced personal narratives) were analysed using constructivist grounded theory methods. Data analysis produced two main themes and sub-themes; (1) Sharing and helping (feeling heard & releasing emotions) and, (2) Re-visiting my story (reflecting and learning). The themes capture insights into the process of storytelling and reveal the therapeutic potential of narrative storytelling when coupled with an altruistic opportunity to help others through story sharing. This study contributes to an emerging area of research and practice supporting positive identity growth following ABI. The findings present substantial implications for goal setting and meaningful productive engagement in brain injury rehabilitation. [ABSTRACT FROM AUTHOR]

Purpose: The aim was to review the empirical literature to determine the nature and breadth of research into the working alliance in acquired brain injury (ABI) rehabilitation. Methods: A scoping review was conducted, beginning with a systematic search of relevant databases using key search terms. Studies with a focus on the role of the working alliance in shaping rehabilitation outcomes, and factors influencing perceptions of the working alliance were included and key information extracted. Results: A total of 10 quantitative studies met inclusion criteria. In most studies, ratings of the working alliance were compared with other process variables or outcome measures. The working alliance was linked to positive activity and participation outcomes, including return to work, school, and driving. Client related factors such as age, level of education and approach to rehabilitation tasks were associated with client and therapist perceptions of the working alliance. Conclusions: The working alliance emerged as a complex process that interacts with many factors and processes at play in the rehabilitation environment. Notwithstanding the limitations of the research base, findings indicate that enhancement of the working alliance may indeed influence rehabilitation outcomes. Allowing time for the development of the working alliance, and consideration of factors such as therapist skill, may support therapists to strengthen their alliances in ABI rehabilitation. Implications for Rehabilitation: Allowing time for the development of the working alliance has the potential to enhance the alliance and thereby influence rehabilitation outcomes. Factors such as the client's age and level of education may influence the strength of the working alliance, and hence, awareness of these factors may assist clinicians in maintaining strong alliances with all clients. A strong working alliance is possible in the presence of client cognitive impairment, however, the skill of the therapist may be important in managing the potential impact of cognitive impairment on the working alliance. [ABSTRACT FROM AUTHOR]

Primary objective: To understand the effects of non-blast-related TBI on peripheral auditory function in adults, as measured through basic and advanced audiological assessments. Background: Despite numerous studies demonstrating hearing loss post TBI there has been no systematic investigation of the prevalence, nature and severity of peripheral hearing loss. Data identification: An English-language systematic search using MEDLINE, CINAHL, PsychINFO, PubMed and hand-searching of reference lists was conducted from 1 January 1990 to 31 October 2016. Study selection: After independent review by the authors, 20 of 281 originally identified articles were retained. Data extraction: Audiological findings were extracted and synthesized across studies. Results: Using the Oxford Centre for Evidence Based Medicine levels of evidence (2009), 3b was the highest level of evidence within the review. Sensorineural hearing loss was the most consistent auditory deficit reported post TBI. Conclusion: The range and frequency of auditory dysfunction in patients with TBI remain unclear. Future research should focus on understanding the nature, frequency and change of auditory deficits over time following TBI. Knowledge in this area will provide crucial information for clinicians and facilitate the development of diagnostic and best practice guidelines which currently are lacking for the management of this patient population. [ABSTRACT FROM AUTHOR]

People with traumatic brain injury (TBI) describe everyday interactions as a long-term challenge frequently associated with ongoing stress. Communication-specific Coping Intervention (CommCope-I) is a new treatment developed to target coping in the context of communication breakdown. The intervention incorporates principles of cognitive behavioural therapy, self-coaching and context-sensitive social communication therapy. The purpose of this study was to examine the effectiveness of CommCope-I in a group of adults with severe TBI and ongoing functional communication difficulties. Participants were 13 adults with severe TBI (GCS = 3-8; mean age = 35.2 years; mean time post-injury = 7.6 years). The project involved three phases: (1) Control/pre-intervention wait phase (multiple assessments), (2) Treatment (6 weeks), and (3) Follow-up (12 weeks). Repeated measures ANOVA with planned pairwise comparisons were used to test the significance of change. Intervention elicited statistically significant improvements in communication-specific coping, functional communication and stress that were maintained for three months. Improved use of communication-specific coping strategies was evident in clinician blind ratings. Clients reported significant reduction in stress at the end of treatment and one and three months later. This intervention provides a promising means of improving communication-specific coping and reducing communication dysfunction and its negative consequences for people with TBI. [ABSTRACT FROM AUTHOR]

Working in neurological rehabilitation brings with it numerous opportunities to gain an understanding of the factors that contribute to shaping meaningful living and wellbeing for those tackling the major life changes encountered following acquired brain injury (ABI). These opportunities come in many forms: challenging and brave clients, wise and worrying families, questioning and inspiring colleagues, empowering and limiting work environments and rigid and advancing policy and legislative contexts. Our personal and collective understanding of the things that help and the things that get in the way of effective rehabilitation continuously emerges from the convergence of the experience and knowledge afforded by these opportunities. The aim of this paper is to consider the things that help and the things that get in the way as they have been identified by people with ABI, their families and those who work with them and have been further evidenced through research targeted towards improving short, medium and long-term outcomes for those living with the consequences of ABI. These things as discussed in this paper capture the essential role of the self, the importance of rights and access to rehabilitation, the impact of the family and the contribution of social connection. [ABSTRACT FROM AUTHOR]

Purpose: Primary progressive aphasia (PPA) is a cognitive-neurodegenerative disorder. Little is known about the personal impact PPA has on those living with this condition, particularly from a spousal perspective. The aim of this qualitative study was to gain an understanding of the personal experiences of spouses living with a partner diagnosed with variant forms of PPA Method: Thirteen spouses whose partners were diagnosed with PPA participated in 1:1 semistructured, in-depth interviews to explore their lived experiences of this illness. Using a constructivist grounded theory approach, analysis moved through a process of data-driven open and focused coding for the identification of emergent categories, themes, and subthemes that captured the challenges faced by spouses while supporting their partners. Results: A constructivist grounded theory analysis of the interview data revealed an overarching theme of "facing the challenges of PPA" that captured the experience spouses encountered when living with a partner diagnosed with PPA. Four interdependent and overlapping themes that sat within this overarching theme included acknowledging disconnect in the spousal relationship, living the decline, readjusting sense of self, and getting on with living. Each of these core themes revealed how spouses dealt with the ongoing and evolving challenges of PPA, particularly concerning changing relational dynamics with their partner and adjusting their own self-conceptualization. Conclusions: Greater understanding of the spousal experiences of PPA is crucial to the development of intervention to help sustain spouses' emotional and relational connections with their partner. [ABSTRACT FROM AUTHOR]

Primary Objective: Many adults with very severe acquired brain injury (ABI) do not receive adequate rehabilitation, limiting their recovery and leading to admission to inappropriate living environments. The aim of this scoping review was to map the existing literature relating to the nature and outcomes of rehabilitation programmes for adults experiencing prolonged recovery after very severe ABI. Design: A comprehensive scoping of the literature was undertaken, including systematic searching of databases, grey literature, and hand searching. Eligible studies had to report on (a) extended rehabilitation for (b) adults with very severe ABI and complex support needs and describe (c) the outcomes of the intervention. Results: From an initial total of 17,829 citations, 18 records were retained for review. Data extraction focused on (i) participant characteristics, (ii) programme information, and (iii) programme outcomes. Studies were characterised by substantial diversity. However, findings suggested that extended rehabilitation assisted participants to live more independently in more home-like environments and contributed towards significant savings in their lifetime care costs. Conclusions: Extended specialised rehabilitation can maximise the independence and participation of adults with very severe ABI. Advocacy is required to ensure that adults with very severe injuries have access to individually tailored, non-time-limited intervention programmes. [ABSTRACT FROM AUTHOR]

Abstract: Background: Although primary progressive aphasia (PPA) is characterized by progressive loss of language and communication skills, knowledge about the earliest emerging signs announcing the onset of this condition is limited. Aims: To explore spousal recollections regarding the earliest signs of PPA and to compare the nature of the earliest perceived symptoms across the three PPA variants. Methods & Procedures: In‐depth interviews focusing on the earliest signs of illness onset were conducted with 13 spouses whose partners were diagnosed with PPA. The earliest recollections and observations described by the spouses were analyzed and coded according to the DSM‐5 criteria for a mild neurocognitive disorder. These data were then compared across and within each of the three PPA variants. Outcomes & Results: Spousal retrospective accounts indicated the three PPA variants (semantic, logopenic and non‐fluent) had a signature profile announcing illness onset. Changes in social cognition presented in all three variants of PPA, but at different points in the illness trajectory. In particular, the findings suggest the possibility that PPA initially presents as subtle changes in social cognition for semantic variant PPA (svPPA) and logopenic variant PPA (IvPPA) rather than overt language impairments as defined in the current diagnostic criteria. Conclusions & Implications: : Understanding the nature of symptoms perceived in the earliest stages of PPA has potential to inform earlier and accurate diagnosis and interventions to assist those living with the illness. [ABSTRACT FROM AUTHOR]

Our ability to interact appropriately in everyday interpersonal situations is fundamental to successful social integration. Impaired pragmatic competence correlates significantly and substantially with indices of social function across several domains for adults with acquired neurological disorders. In particular, evidence supports the negative impact of pragmatic impairments on the development and maintenance of relationships and community integration more generally.Pragmatic language competence sits in a complex, multifactorial space characterised by interacting associations with cognitive and psychological functions and social and environmental parameters. This complexity is evident in much of the research seeking to unravel the nature and magnitude of interactions between pragmatic language competence and social outcomes in adults with acquired neurological disorders.Over recent years our understanding of the impact of pragmatic impairments on social outcome has benefited substantially from inclusion of the insider's perspective in our research evidence base. Indeed, a methodological inclusion of constructivist paradigms has enabled the development of a rich understanding of the devastating social impact of impaired pragmatic competence.The aim of this paper is to review pragmatic language impairment in the context of traumatic brain injury (TBI) and detail its impact on social functioning from the perspectives of people with TBI and their intimate partners/spouses and friends. With these perspectives as background, the paper concludes with consideration of therapeutic developments and a brief look at a novel intervention designed to reduce the negative impact of pragmatic deficits and improve functional language use following TBI. [ABSTRACT FROM AUTHOR]

Purpose: Although adults who sustain a severe traumatic brain injury (TBI) require support to make decisions in their lives, little is known about their experience of this process. The aim of this study was to explore how participation in decision making contributes to self-conceptualization in adults with severe TBI. Method: We used constructivist grounded theory methods. Data included 20 in-depth interviews with adults with severe TBI. Through a process of constant comparison, analysis involved open and focused coding until clear categories emerged and data saturation was achieved. Results: Self-conceptualization emerged as a complex and multifaceted process, as individuals with TBI aimed to reestablish a sense of autonomy. We describe a recursive relationship in which decision-making participation assists the dynamic construction of self, and self-concept contributes to the experience of making decisions. The role of an individual's social support network in acting as a bridge between participation and self-conceptualization is presented. Conclusions: Findings emphasize that contributing to decisions about one's own goals across a range of life areas can reinforce a positive self-concept. It is vital that supporters understand that participation in decision making provides a pathway to conceptualizing self and aim to maximize the person's participation in the decision-making process. [ABSTRACT FROM AUTHOR]

The UNCRPD has generated debate about supported decision making as a way to better enable people with cognitive disability to participate in decision making. In Australia, between 2010-2015, a series of projects have piloted various models of delivering decision making support. A critical review was conducted on the program documents and evaluations of these pilot projects. The pilots were small scale, conducted by both statutory and non-statutory bodies, and adopted similar designs centred on supporting a decision maker/supporter dyad. Primarily, participants were people with mild intellectual disability. Themes included: positive outcomes; uncertain boundaries of decision support; difficulty securing supporters; positive value of program staff and support to supporters; limited experience and low expectations; and varying value of written resources. The lack of depth and rigour of evaluations mean firm conclusions cannot be reached about program logics, costs or outcomes of the pilots. The pilots demonstrate feasibility of providing support for decision making rather than resolving issues involved in delivering support. They suggest that some form of authority may facilitate the role of decision supporters, help to engage others in a person's life, and integrate decision making support across all life domains. [ABSTRACT FROM AUTHOR]

Abstract Purpose Methods Results Conclusions \nIMPLICATIONS FOR REHABILITATION Social isolation and reduced social participation are common after traumatic brain injury (TBI). Developing interventions that aim to increase social participation through recreation or leisure activities continues to be challenging. This scoping review was conducted to provide an overview of interventions used to increase social participation through in-person recreation or leisure activity for adults with moderate to severe TBI living in the community.Using the Arksey and O'Malley framework, a scoping review of the literature published from 2005 to 2023 was conducted across four databases: Medline, CINAHL, PsycINFO and Scopus. Quality appraisals were conducted for included studies.Following the removal of duplicates, 10,056 studies were screened and 52 were retained for full-text screening. Seven papers were included in the final review. Studies varied with respect to the type of intervention and program outcomes. The interpretation was impeded by study quality, with only two studies providing higher levels of evidence. Barriers and facilitators to successful program outcomes were identified.Few studies with interventions focused on increasing social participation in leisure or recreation activity were identified. Further research incorporating mixed methods and longitudinal design to evaluate effectiveness over time is needed to build the evidence base for increasing social participation through leisure activity. There is evidence to support participating in recreation and leisure activities that involve interactions with others can increase social participation outcomes for adults with moderate to severe traumatic brain injury. Participating in leisure-based interventions not only provides opportunities for social connection but may also impact positively on personal wellbeing, enjoyment, and confidence. Understanding the range of personal, practical, support, and activity factors that can facilitate or obstruct participation in leisure or recreational activity programs at an individual level may improve social participation outcomes. Measuring the impact of an intervention for social participation should include post-intervention changes across outcome domains and over time There is evidence to support participating in recreation and leisure activities that involve interactions with others can increase social participation outcomes for adults with moderate to severe traumatic brain injury.Participating in leisure-based interventions not only provides opportunities for social connection but may also impact positively on personal wellbeing, enjoyment, and confidence.Understanding the range of personal, practical, support, and activity factors that can facilitate or obstruct participation in leisure or recreational activity programs at an individual level may improve social participation outcomes.Measuring the impact of an intervention for social participation should include post-intervention changes across outcome domains and over time [ABSTRACT FROM AUTHOR]

Background: Semantic variant primary progressive aphasia (svPPA) is an uncommon neurodegenerative condition that causes prominent changes in communication skills, personality and behaviour. Insidious deterioration in conceptual–semantic memory abilities is the hallmark feature underpinning these impairments from the early-to-middle phases. Very little research has explored how svPPA is experienced by spouses/partners, particularly how they “make sense” of the presenting difficulties, deal with everyday issues and manage the changing psychosocial aspects of their intimate relationship. Aims: This instrumental case study explored the experience of a spouse who supported her husband with svPPA throughout the course of the condition, with a particular focus on how she dealt with the relational changes svPPA imposed on them. Methods & Procedures: Instrumental case study design with thematic narrative analysis was applied to the in-depth interview data, in order to obtain an understanding of the lived experience from the perspective of a wife whose husband had svPPA. Outcome & Results: Analysis of the interview data revealed five main themes of the spousal experience of svPPA: (1) Us, (2) The way he was … The way he is now, (3) Floundering with unpredictability, (4) Adjusting and accepting support and (5) Taking control. This case study explored how and why this spouse worked towards renegotiating the relational context of their relationship over the illness course. Conclusions: From the spouse’s perspective, learning to live with a “different person” was traumatic and involved floundering with unpredictability, adjusting and accepting support, and taking control. Clinicians need to remain sensitive to the pivotal role the spouse has in their partner’s life and mindful of that they may benefit from assistance and support to modify the relational aspects of their relationship with their partner throughout the course of the condition. [ABSTRACT FROM PUBLISHER]

BACKGROUND: Olfactory impairment (OI) can present in up to 66% of all individuals following traumatic brain injury (TBI) and can have significant implications for everyday life. OBJECTIVE: To investigate the predictive factors, natural progression and consequences of OI following TBI in individuals 12 months post injury. METHODS: In this prospective longitudinal study, 37 adults (28 males, 9 females), mean age 42.3 years (SD 19.4), with predominately severe TBI (mean length of posttraumatic amnesia (PTA) 28.6 days, SD 22.6) were assessed using the University of Pennsylvania Smell Identification Test (UPSIT). Each participant also participated in an open ended interview to allow exploration of their experience of having OI. RESULTS: Thirty (83.33%) of the participants demonstrated persisting OI at 12 months. Nineteen of these participants demonstrated no change in their OI severity category and 4 produced a poorer performance. Thirteen participants (36.11%) demonstrated some recovery with 6 of these performing within the 'normal' range for age and gender. CONCLUSIONS: OI is an enduring impairment for a substantial proportion of individuals who experience it following severe TBI. It impacts a range of everyday activities, regardless of its severity, and requires comprehensive management during rehabilitation. [ABSTRACT FROM AUTHOR]

Purpose: Return to competitive employment presents a major challenge to adults who survive traumatic brain injury (TBI). This study was undertaken to better understand factors that shape employment outcome by comparing the communication profiles and self-awareness of communication deficits of adults who return to and maintain employment with those who do not. Method: Forty-six dyads (46 adults with TBI, 46 relatives) were recruited into 2 groups based on the current employment status (employed or unemployed) of participants with TBI. Groups did not differ in regard to sex, age, education, preinjury employment, injury severity, or time postinjury. The La Trobe Communication Questionnaire (Douglas, O'Flaherty, & Snow, 2000) was used to measure communication. Group comparisons on La Trobe Communication Questionnaire scores were analyzed by using mixed 2 x 2 analysis of variance (between factor: employment status; within factor: source of perception). Results: Analysis yielded a significant group main effect (p = .002) and a significant interaction (p = .004). The employed group reported less frequent difficulties (self and relatives). Consistent with the interaction, unemployed participants perceived themselves to have less frequent difficulties than their relatives perceived, whereas employed participants reported more frequent difficulties than their relatives. Conclusion: Communication outcome and awareness of communication deficits play an important role in reintegration to the workplace following TBI. [ABSTRACT FROM AUTHOR]

There is growing recognition of the right of all individuals, including those with cognitive impairment, to make decisions about their own lives. However, little is known about how the process of decision making is experienced after severe traumatic brain injury (TBI). This study used constructivist grounded theory to explore processes used by adults with severe TBI and their parents in making decisions about life after injury. Data consisted of 18 individual, in-depth interviews with four dyads (consisting of an individual with severe TBI and his or her parent). The overlying construct emerging from the data was a process ofreimagining the future, which influenced how participants approached and participated in making decisions. In line with this construct, two central themes described processes of joint decision making within parent–adult child relationships after severe TBI over time: (1) making decisions with parental support, and (2) reducing parental involvement. These findings emphasise the complexity of supporting decision making after injury, and illustrate that both parents and their adult children with TBI use explicit and implicit strategies to facilitate increased participation in making decisions. This study also underscores the need for brain injury clinicians to consider the needs of parents who find themselves in this role. [ABSTRACT FROM PUBLISHER]

Background and aims: As many as 50–60% of patients with traumatic brain injury (TBI) admitted to rehabilitation facilities may have olfactory impairment (OI). These incidence estimates are derived from studies conducted internationally and there is no comparable data available in the Australian context. The primary aim of this study was to identify the incidence of OI following TBI in a consecutive sample of adults admitted to the Epworth Hospital Brain Injury Rehabilitation Program in Victoria, Australia. A secondary aim was to investigate whether age, duration of posttraumatic amnesia (PTA) and presence of facial fractures made a significant contribution to the prediction of severity of OI.Method: The sample comprised 134 adults (mean age 39.09 years, SD 18.36), the majority of whom had sustained moderate to severe injury (PTA mean 21.57 days, SD 18.78). OI was measured using the Pocket Smell Test (PST) and the University of Pennsylvania Smell Identification Test (UPSIT).Results: Seventy-three participants (54.48%) demonstrated OI on the PST whereas 89 (66.42%) demonstrated OI on the UPSIT. Age, PTA duration, and presence of facial fractures predicted 10.3% of the variance in severity of OI.Conclusion: A substantial proportion of adults admitted for rehabilitation following TBI has OI. Accurate assessment and appropriate management of post-traumatic OI must be incorporated into rehabilitation programs. [ABSTRACT FROM PUBLISHER]