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1.
Brain Impair ; 252024 Aug.
Artículo en Inglés | MEDLINE | ID: mdl-39094010

RESUMEN

Background People with Multiple Sclerosis (MS) have unique housing and support needs that are essential for maintaining independence at home; however, there is limited research to guide the design of community living options for this population. The aim of this study was to examine housing and support needs and preferences of people with MS with the intention to inform the planning of a co-designed intervention based on the study's findings. Methods Using the Knowledge to Action (KTA) framework, quantitative (n =79) and qualitative (n =6) data from people with MS were extracted and integrated from projects completed by the research team that explored the housing and support needs and preferences of people with disability. Results were synthesised and presented to a reference group for validation, contextualisation, and adaptation to the Australian context. Results High physical support needs were common across participants. People most commonly required home modifications to improve accessibility, such as ramps, equipment such as heating and cooling, and assistive technology. Many people required more than 8 hours per day of paid support. Moving into individualised housing facilitated independence and community reintegration. People reported gaps between what they wanted from support workers and what they received, citing individual and systemic barriers. Conclusion People with MS have support needs that require proactive and responsive funding arrangements, housing design and support provision. In line with KTA principles, findings will inform the planning of a co-designed intervention that involves people with lived experience of MS and other stakeholders to influence policy and improve home and living outcomes for this population.


Asunto(s)
Vivienda , Esclerosis Múltiple , Humanos , Esclerosis Múltiple/terapia , Esclerosis Múltiple/psicología , Masculino , Femenino , Persona de Mediana Edad , Adulto , Australia , Personas con Discapacidad/psicología , Personas con Discapacidad/rehabilitación , Vida Independiente , Anciano , Apoyo Social
2.
BMJ Open ; 14(5): e083102, 2024 May 30.
Artículo en Inglés | MEDLINE | ID: mdl-38816056

RESUMEN

INTRODUCTION: Around the world, the disability rights movements and the social model of disability have placed emphasis on the importance of social participation for people with disability. People with physical disability who have high and complex support needs often need support to access their communities, however, very little is known about the interaction between support and social participation for this population of people. Therefore, the aim of this scoping review is to explore the literature related to the interaction between support and social participation for adults with disability and understand any existing gaps in the literature where further research may be required in order to maximise quality support and social participation. METHODS AND ANALYSIS: This scoping review will be conducted and reported according to scoping review guidelines outlined by Arksey and O'Malley and later modified by Levac et al, as well as the Preferred Reporting Items for Systematic Reviews and Meta-Analysis: Extension for Scoping Reviews. Thorough database searches will be conducted across MEDLINE, PsycINFO, CINAHL and Scopus. The search will be limited to papers published in English from 2013 onwards. Citations will be uploaded into Covidence and screened by two independent reviewers. Data extraction will extract data regarding participants, housing, support and study characteristics, as well as qualitative and quantitative data relevant to the research question. A narrative synthesis will be used to summarise findings. A minimum of three consultants with lived experience of disability will be engaged to review and contribute to the final scoping review paper. ETHICS AND DISSEMINATION: It is anticipated that the findings of this scoping review will be made available in peer-reviewed publications and also in plain language formats to ensure accessibility to a wide range of audiences. Ethics will not be required for this scoping review.


Asunto(s)
Personas con Discapacidad , Participación Social , Apoyo Social , Humanos , Personas con Discapacidad/psicología , Proyectos de Investigación , Literatura de Revisión como Asunto
3.
Disabil Rehabil ; : 1-13, 2024 Feb 19.
Artículo en Inglés | MEDLINE | ID: mdl-38372232

RESUMEN

PURPOSE: People 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. METHODS: 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. RESULTS: 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. CONCLUSIONS: 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.

4.
Int J Speech Lang Pathol ; 26(1): 1-15, 2024 Feb.
Artículo en Inglés | MEDLINE | ID: mdl-36920239

RESUMEN

PURPOSE: Limited research informs management of cognitive-communication difficulties following traumatic brain injury (TBI) in older adulthood. The purpose of this study was to understand the characteristics and practice of speech-language pathologists (SLPs) working with people who sustained TBI at ≥55 years and more specifically their management of cognitive-communication difficulties with this population. This included assessment and treatment practices, resource needs, barriers to practice, and impact to service delivery from COVID-19 restrictions. METHOD: A cross-sectional survey-based design with non-probability sampling of SLPs working in Australia with adults with TBI was utilised. Descriptive statistics and content analysis were used for analysis of survey data. RESULT: Fifty responses were eligible for inclusion. Participants predominantly worked in inpatient rehabilitation (48%), acute (40%), and community settings (36%). Service delivery to adults who sustained TBI at ≥55 years commonly included cognitive-communication management. Assessment and treatment trends are described. Most SLPs (74%) perceived barriers to cognitive-communication management, often relating to time and funding, that existed prior to the COVID-19 pandemic. Pandemic restrictions presented additional challenges. CONCLUSION: Research relating to cognitive-communication difficulties following TBI in older adulthood is required to support evidence-based practice and inform services for older adults who sustain TBI.


Asunto(s)
Lesiones Traumáticas del Encéfalo , Trastornos de la Comunicación , Patología del Habla y Lenguaje , Humanos , Anciano , Estudios Transversales , Pandemias , Lesiones Traumáticas del Encéfalo/complicaciones , Lesiones Traumáticas del Encéfalo/terapia , Encuestas y Cuestionarios , Trastornos de la Comunicación/etiología , Trastornos de la Comunicación/terapia , Comunicación , Cognición , Habla
5.
Disabil Rehabil ; : 1-17, 2023 Aug 21.
Artículo en Inglés | MEDLINE | ID: mdl-37607065

RESUMEN

PURPOSE: 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. METHODS: 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. RESULTS: 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. CONCLUSIONS: 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.

6.
BMJ Open ; 13(4): e068059, 2023 04 19.
Artículo en Inglés | MEDLINE | ID: mdl-37076156

RESUMEN

INTRODUCTION: General practitioners (GPs) play a crucial role in the early management and treatment of the comorbidities and complications experienced by people with disability. However, GPs experience multiple constraints, including limited time and disability-related expertise. Knowledge gaps around the health needs of people with disability as well as the frequency and extent of their engagement with GPs mean evidence to inform practice is limited. Using a linked dataset, this project aims to enhance the knowledge of the GP workforce by describing the health needs of people with disability. METHODS AND ANALYSIS: This project is a retrospective cohort study using general practice health records from the eastern Melbourne region in Victoria, Australia. The research uses Eastern Melbourne Primary Health Network (EMPHN)-owned de-identified primary care data from Outcome Health's POpulation Level Analysis and Reporting Tool (POLAR). The EMPHN POLAR GP health records have been linked with National Disability Insurance Scheme (NDIS) data. Data analysis will involve comparisons across disability groups and the rest of the population to explore utilisation (eg, frequency of visits), clinical and preventative care (eg, cancer screening, blood pressure readings) and health needs (eg, health conditions, medications). Initial analyses will focus on NDIS participants as a whole and NDIS participants whose condition is either an acquired brain injury, stroke, spinal cord injury, multiple sclerosis or cerebral palsy, as classified by the NDIS. ETHICS AND DISSEMINATION: Ethics approval was obtained from the Eastern Health Human Research Ethics Committee (E20/001/58261), and approval for the general collection, storage and transfer of data was from the Royal Australian College of General Practitioners National Research Ethics and Evaluation Committee (protocol ID: 17-088). Dissemination mechanisms will include the engagement of stakeholders through reference groups and steering committees, as well as the production of research translation resources in parallel with peer-reviewed publications and conference presentations.


Asunto(s)
Personas con Discapacidad , Humanos , Estudios Retrospectivos , Victoria , Almacenamiento y Recuperación de la Información , Atención Primaria de Salud
7.
J Head Trauma Rehabil ; 38(1): 7-23, 2023.
Artículo en Inglés | MEDLINE | ID: mdl-36594856

RESUMEN

INTRODUCTION: Moderate to severe traumatic brain injury (TBI) results in complex cognitive sequelae. Despite hundreds of clinical trials in cognitive rehabilitation, the translation of these findings into clinical practice remains a challenge. Clinical practice guidelines are one solution. The objective of this initiative was to reconvene the international group of cognitive researchers and clinicians (known as INCOG) to develop INCOG 2.0: Guidelines for Cognitive Rehabilitation Following TBI. METHODS: The guidelines adaptation and development cycle was used to update the recommendations and derive new ones. The team met virtually and reviewed the literature published since the original INCOG (2014) to update the recommendations and decision algorithms. The team then prioritized the recommendations for implementation and modified the audit tool accordingly to allow for the evaluation of adherence to best practices. RESULTS: In total, the INCOG update contains 80 recommendations (25 level A, 15 level B, and 40 level C) of which 27 are new. Recommendations developed for posttraumatic amnesia, attention, memory, executive function and cognitive-communication are outlined in other articles, whereas this article focuses on the overarching principles of care for which there are 38 recommendations pertaining to: assessment (10 recommendations), principles of cognitive rehabilitation (6 recommendations), medications to enhance cognition (10 recommendations), teleassessment (5 recommendations), and telerehabilitation intervention (7 recommendations). One recommendation was supported by level A evidence, 7 by level B evidence, and all remaining recommendations were level C evidence. New to INCOG are recommendations for telehealth-delivered cognitive assessment and rehabilitation. Evidence-based clinical algorithms and audit tools for evaluating the state of current practice are also provided. CONCLUSIONS: Evidence-based cognitive rehabilitation guided by these recommendations should be offered to individuals with TBI. Despite the advancements in TBI rehabilitation research, further high-quality studies are needed to better understand the role of cognitive rehabilitation in improving patient outcomes after TBI.


Asunto(s)
Lesiones Traumáticas del Encéfalo , Lesiones Encefálicas , Humanos , Lesiones Encefálicas/rehabilitación , Entrenamiento Cognitivo , Lesiones Traumáticas del Encéfalo/complicaciones , Función Ejecutiva , Atención
8.
J Head Trauma Rehabil ; 38(1): 65-82, 2023.
Artículo en Inglés | MEDLINE | ID: mdl-36594860

RESUMEN

INTRODUCTION: Moderate to severe traumatic brain injury causes significant cognitive impairments, including impairments in social cognition, the ability to recognize others' emotions, and infer others' thoughts. These cognitive impairments can have profound negative effects on communication functions, resulting in a cognitive-communication disorder. Cognitive-communication disorders can significantly limit a person's ability to socialize, work, and study, and thus are critical targets for intervention. This article presents the updated INCOG 2.0 recommendations for management of cognitive-communication disorders. As social cognition is central to cognitive-communication disorders, this update includes interventions for social cognition. METHODS: An expert panel of clinicians/researchers reviewed evidence published since 2014 and developed updated recommendations for interventions for cognitive-communication and social cognition disorders, a decision-making algorithm tool, and an audit tool for review of clinical practice. RESULTS: Since INCOG 2014, there has been significant growth in cognitive-communication interventions and emergence of social cognition rehabilitation research. INCOG 2.0 has 9 recommendations, including 5 updated INCOG 2014 recommendations, and 4 new recommendations addressing cultural competence training, group interventions, telerehabilitation, and management of social cognition disorders. Cognitive-communication disorders should be individualized, goal- and outcome-oriented, and appropriate to the context in which the person lives and incorporate social communication and communication partner training. Group therapy and telerehabilitation are recommended to improve social communication. Augmentative and alternative communication (AAC) should be offered to the person with severe communication disability and their communication partners should also be trained to interact using AAC. Social cognition should be assessed and treated, with a focus on personally relevant contexts and outcomes. CONCLUSIONS: The INCOG 2.0 recommendations reflect new evidence for treatment of cognitive-communication disorders, particularly social interactions, communication partner training, group treatments to improve social communication, and telehealth delivery. Evidence is emerging for the rehabilitation of social cognition; however, the impact on participation outcomes needs further research.


Asunto(s)
Lesiones Traumáticas del Encéfalo , Lesiones Encefálicas , Trastornos del Conocimiento , Trastornos de la Comunicación , Humanos , Lesiones Encefálicas/rehabilitación , Entrenamiento Cognitivo , Cognición Social , Trastornos del Conocimiento/etiología , Trastornos del Conocimiento/rehabilitación , Lesiones Traumáticas del Encéfalo/complicaciones , Trastornos de la Comunicación/etiología , Cognición , Comunicación
9.
J Head Trauma Rehabil ; 38(1): 52-64, 2023.
Artículo en Inglés | MEDLINE | ID: mdl-36594859

RESUMEN

INTRODUCTION: Moderate-to-severe traumatic brain injury (MS-TBI) causes debilitating and enduring impairments of executive functioning and self-awareness, which clinicians often find challenging to address. Here, we provide an update to the INCOG 2014 guidelines for the clinical management of these impairments. METHODS: An expert panel of clinicians/researchers (known as INCOG) reviewed evidence published from 2014 and developed updated recommendations for the management of executive functioning and self-awareness post-MS-TBI, as well as a decision-making algorithm, and an audit tool for review of clinical practice. RESULTS: A total of 8 recommendations are provided regarding executive functioning and self-awareness. Since INCOG 2014, 4 new recommendations were made and 4 were modified and updated from previous recommendations. Six recommendations are based on level A evidence, and 2 are based on level C. Recommendations retained from the previous guidelines and updated, where new evidence was available, focus on enhancement of self-awareness (eg, feedback to increase self-monitoring; training with video-feedback), meta-cognitive strategy instruction (eg, goal management training), enhancement of reasoning skills, and group-based treatments. New recommendations addressing music therapy, virtual therapy, telerehabilitation-delivered metacognitive strategies, and caution regarding other group-based telerehabilitation (due to a lack of evidence) have been made. CONCLUSIONS: Effective management of impairments in executive functioning can increase the success and well-being of individuals with MS-TBI in their day-to-day lives. These guidelines provide management recommendations based on the latest evidence, with support for their implementation, and encourage researchers to explore and validate additional factors such as predictors of treatment response.


Asunto(s)
Lesiones Traumáticas del Encéfalo , Lesiones Encefálicas , Humanos , Función Ejecutiva , Lesiones Encefálicas/rehabilitación , Entrenamiento Cognitivo , Lesiones Traumáticas del Encéfalo/complicaciones , Solución de Problemas
10.
Disabil Rehabil ; 45(21): 3610-3619, 2023 10.
Artículo en Inglés | MEDLINE | ID: mdl-36222354

RESUMEN

PURPOSE: 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. METHOD: 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. RESULTS: 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. CONCLUSIONS: 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.IMPLICATIONS FOR REHABILITATIONAll 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.


Asunto(s)
Rehabilitación de Accidente Cerebrovascular , Accidente Cerebrovascular , Humanos , Personal de Salud , Australia , Autoeficacia
11.
Disabil Rehabil ; 45(8): 1370-1378, 2023 04.
Artículo en Inglés | MEDLINE | ID: mdl-35476612

RESUMEN

PURPOSE: To assess the change in individual outcomes for people with disability and complex needs after moving into newly built, individualised apartments in the community. METHODS: 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. RESULTS: 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. CONCLUSIONS: 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. Implications for rehabilitationPeople 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.


Asunto(s)
Personas con Discapacidad , Vivienda , Humanos , Características de la Residencia , Cuidados Paliativos , Padres
12.
Disabil Rehabil ; 45(13): 2138-2148, 2023 06.
Artículo en Inglés | MEDLINE | ID: mdl-35727953

RESUMEN

PURPOSE: 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. METHODS: 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. RESULTS: 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. CONCLUSIONS: 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. IMPLICATIONS FOR REHABILITATIONTo 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.


Asunto(s)
Personas con Discapacidad , Humanos , Adulto , Teoría Fundamentada
13.
Disabil Rehabil ; 45(25): 4259-4271, 2023 Dec.
Artículo en Inglés | MEDLINE | ID: mdl-36415091

RESUMEN

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.IMPLICATIONS FOR REHABILITATIONDelivering quality support in practice relies upon the support worker recognising, centring, and respecting the autonomy of the person with disability.To deliver quality support, support workers need to feel valued, be committed to the role and actively work to maintain and improve the quality of support provision.Quality support provision is facilitated by the support worker and the person with disability effectively balancing boundaries and friendship, and in turn building a quality working relationship.


Asunto(s)
Personas con Discapacidad , Adulto , Humanos , Teoría Fundamentada
14.
Brain Impair ; 24(3): 611-628, 2023 12.
Artículo en Inglés | MEDLINE | ID: mdl-38167366

RESUMEN

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.


Asunto(s)
Audiología , Lesiones Traumáticas del Encéfalo , Humanos , Masculino , Femenino , Estudios Transversales , Australia/epidemiología , Audiólogos , Lesiones Traumáticas del Encéfalo/diagnóstico
15.
Neuropsychol Rehabil ; : 1-29, 2022 Dec 08.
Artículo en Inglés | MEDLINE | ID: mdl-36480012

RESUMEN

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.

16.
Artículo en Inglés | MEDLINE | ID: mdl-36583452

RESUMEN

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.

17.
Health Expect ; 25(6): 2726-2745, 2022 12.
Artículo en Inglés | MEDLINE | ID: mdl-36322481

RESUMEN

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.


Asunto(s)
Personas con Discapacidad , Medicina General , Médicos Generales , Humanos , Adolescente , Adulto Joven , Adulto , Persona de Mediana Edad , Anciano , Atención a la Salud , Australia
18.
JMIR Res Protoc ; 11(10): e40548, 2022 Oct 31.
Artículo en Inglés | MEDLINE | ID: mdl-36315220

RESUMEN

BACKGROUND: Resuming work after stroke is a common goal of working-age adults, yet there are few vocational rehabilitation programs designed to address the unique challenges faced following stroke. The Work intervention was developed to address these gaps. OBJECTIVE: This paper presents a protocol that outlines the steps that will be undertaken to pilot both the intervention and trial processes for the Work trial. METHODS: The Work trial is a 2-arm, prospective, randomized, blinded-assessor study with intention-to-treat analysis. A total of 54 adults of working age who have experienced a stroke <4 months prior will be randomized 1:1 to either (1) an experimental group who will receive a 12-week early vocational intervention (Work intervention) plus usual clinical rehabilitation or (2) a control group who will receive only their usual clinical rehabilitation. RESULTS: Outcomes include study and intervention feasibility and intervention benefit. In addition to evaluating the feasibility of delivering vocational intervention early after stroke, benefit will be assessed by measuring rates of vocational participation and quality-of-life improvements at the 3- and 6-month follow-ups. Process evaluation using data collected during the study, as well as postintervention individual interviews with participants and surveys with trial therapists, will complement quantitative data. CONCLUSIONS: The results of the trial will provide details on the feasibility of delivering the Work intervention embedded within the clinical rehabilitation context and inform future trial processes. Pilot data will enable a future definitive trial to determine the clinical effectiveness of vocational rehabilitation when delivered in the early subacute phase of stroke recovery. TRIAL REGISTRATION: Australian New Zealand Clinical Trials Registry ACTRN12619001164189; https://www.anzctr.org.au/Trial/Registration/TrialReview.aspx?id=378112&isReview=true. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): DERR1-10.2196/40548.

19.
Am J Speech Lang Pathol ; 31(6): 2557-2568, 2022 11 16.
Artículo en Inglés | MEDLINE | ID: mdl-36201170

RESUMEN

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.


Asunto(s)
Lesiones Traumáticas del Encéfalo , Lesiones Encefálicas , Humanos , Anciano , Adolescente , Adulto Joven , Adulto , Persona de Mediana Edad , Anciano de 80 o más Años , Tiempo de Internación , Estudios Retrospectivos , Lesiones Encefálicas/diagnóstico , Australia , Lesiones Traumáticas del Encéfalo/complicaciones , Lesiones Traumáticas del Encéfalo/diagnóstico , Comunicación , Cognición
20.
BMJ Open ; 12(9): e064226, 2022 09 21.
Artículo en Inglés | MEDLINE | ID: mdl-36130757

RESUMEN

INTRODUCTION: Community integration and social participation remain a challenge for many individuals following acquired brain injury (ABI) and the transition from hospital to home is a complex journey. It is important to conceptualise this transition from the perspective of people with ABI, to inform future research with the overall aim of improving the experience of community re-engagement and maintaining important relationships within social networks. METHODS AND ANALYSIS: The methodology outlined by Arksey and O'Malley and the Preferred Reporting Items for Systematic Reviews and Meta-Analysis: extension for Scoping Reviews will be used to guide the review. A comprehensive electronic database search will be conducted in MEDLINE, CINAHL, Scopus, Embase and PsychINFO. The search will aim to locate only published, qualitative or mixed methods studies and will be limited to citations published in English, from January 2014 to the date of final search completion. Quality assessment using the Critical Appraisal Skills Programme will be completed and reported.Data extraction will include participant and study characteristics.Finally, qualitative data from each citation, including participant quotes, will be extracted and thematic analysis will be completed to support conceptualisation of community participation from those who have experienced the transition to the community following discharge from hospital. Three individuals with lived experiences of ABI will be engaged as paid consultants to review and comment on the findings of the review. ETHICS AND DISSEMINATION: It is intended that the findings from this review will be made available to relevant stakeholders through peer-reviewed publications and conference presentations. This scoping review does not require an ethics application.


Asunto(s)
Lesiones Encefálicas , Hospitales , Adulto , Lesiones Encefálicas/terapia , Participación de la Comunidad , Humanos , Proyectos de Investigación , Literatura de Revisión como Asunto , Revisiones Sistemáticas como Asunto
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