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To examine the implementation of a novel Acquired Brain Injury (ABI) Transition-Specific Service Model in Queensland, Australia to explore its potential for successful operationalization in a clinical context and what, if any, modifications were indicated.This study is part of a larger evaluation of the ABI Transitional Rehabilitation Service (ABITRS) Pilot Project using a Hybrid Type 1 research design. Data was drawn from a process evaluation nested within the larger study. Stirman et al.'s FRAME guided assessment of modifications made to the proposed Transition-Specific Service Model during implementation.The proposed Transition-Specific Service Model provided a foundational framework for establishing an ABI transitional rehabilitation service in Queensland. All designated key service delivery features of the model were implemented; context and content modifications occurred in response to the implementation experience. Priority areas for intervention were comprehensively addressed, with significant changes made to the proposed staffing profile to address an identified need for more senior clinicians.The ABITRS Pilot Project provided an opportunity to test and refine elements of an ABI Transition-Specific Service Model in a clinical context. Knowledge gained from this process has the potential to inform future design of transitional rehabilitation services for acquired brain injury.
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Lesiones Encefálicas , Humanos , Proyectos Piloto , Lesiones Encefálicas/rehabilitación , AustraliaRESUMEN
Transitional rehabilitation service models for people with acquired brain injury (ABI) may address sub-optimal support for individuals returning home after hospitalization for ABI. This study investigated perspectives of people with ABI and close others who received transitional rehabilitation. A qualitative study involving semi-structured interviews with 10 individuals with ABI and 12 associated close others was conducted as part of a mixed-method evaluation of an Australian transitional rehabilitation service (TRS) pilot project. Thematic analysis based on the Framework method was conducted independently by two researchers. Three broad themes illustrated participants' experience of the TRS: (1) structure after hospital discharge; (2) a "soft landing"; and (3) equipped for community living. Findings suggest that home-based, interdisciplinary transitional rehabilitation after hospital discharge was perceived as an important stage of rehabilitation by participants. Valued features relate to post-hospital rehabilitation structure: a single point of contact to facilitate organization and information exchange, a known discharge destination, and consistent communication; support and therapy within a familiar home environment; and being equipped with relevant knowledge and strategies to manage ongoing challenges. Further research exploring the experiences of individuals with ABI without close family or social support, and research capturing longitudinal outcomes from transitional rehabilitation is recommended.
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Lesiones Encefálicas , Humanos , Masculino , Lesiones Encefálicas/rehabilitación , Australia , Apoyo Social , Adulto , Proyectos Piloto , Investigación Cualitativa , Entrevistas como Asunto , Cuidado de Transición , Femenino , Adolescente , Persona de Mediana Edad , AncianoRESUMEN
OBJECTIVE: To explore patients' thoughts and satisfaction with using videoconferencing during the COVID-19 pandemic. The current study aimed to gather (1) patient feedback and satisfaction with videoconferencing across all health professions as well as divided into a subgroup for each profession, (2) patient preferences for either videoconference or face-to-face consultations during the pandemic lockdown, and (3) whether patients would consider using videoconferencing once face-to-face appointments were available. DESIGN: An observational cross-sectional, mixed methods study design. SETTING: Tertiary-level persistent pain center. PARTICIPANTS: Sixty-five patients aged 18 to 85 years with persistent pain lasting more than 12 months. INTERVENTIONS: Not applicable. MAIN OUTCOME MEASURES: Data were collected using a patient survey. Descriptive statistics were used to report findings from 5-point Likert scales. Qualitative analysis was guided by content analysis to organize and categorize the open-ended survey response text. RESULTS: Videoconferencing platform features including audiovisual, usability, and privacy worked well for most patients (≥90%). Two-thirds of those surveyed reported the videoconferencing sessions as equal to face-to-face attendance (68%). In the context of the pandemic, almost as many preferred videoconferencing (65%), whereas 26% preferred face-to-face attendance and 9% were unsure. Preferences for videoconferencing over face-to-face in context to the pandemic varied depending on the health discipline involved: pharmacy (83%), occupational therapy (78%), psychology (61%), pain specialist physician (59%), and physiotherapy (53%). Even outside of a pandemic situation, 80% would consider using videoconferencing in the future. Qualitative analysis on an open-ended question asking patients for any further comments regarding their experience with the videoconference consultation, found 3 main categories: (1) overall satisfaction with videoconferencing, (2) technology qualities and (3) clinical interaction. CONCLUSION: In the context of a pandemic, videoconferencing for interdisciplinary persistent pain management services was effective and preferred, and most patients would continue its use into the future. Alternative or mixed modes of support may be needed for the 26% who currently prefer onsite attendance, when that mode of delivery is not available.
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COVID-19/epidemiología , Control de Enfermedades Transmisibles/métodos , Manejo del Dolor/métodos , Dolor/epidemiología , Pandemias , SARS-CoV-2 , Comunicación por Videoconferencia , Comorbilidad , Estudios Transversales , Femenino , Humanos , Masculino , Persona de Mediana Edad , Prioridad del Paciente , Modalidades de Fisioterapia , Investigación Cualitativa , Queensland/epidemiología , Estudios Retrospectivos , Telemedicina/métodosRESUMEN
OBJECTIVE: This study aimed to determine the influence of participation in a designated acquired brain injury (ABI) transitional rehabilitation service (ABI TRS) on outcome, in the context of a historical comparison group (HIST). Design: A cohort study, with retrospective comparison. Participants: 187 persons with ABI. Measures: The Depression, Anxiety and Stress Scale (DASS-21), Mayo-Portland Adaptability Index (MPAI-4) and Sydney Psychosocial and Reintegration Scale (SPRS) were completed at discharge and 3 months after discharge. Participation in the ABI TRS involved interdisciplinary rehabilitation, 2-4 times per week, for 3 months after hospital discharge. Results: There was evidence that at 3 months, participants with ABI TRS showed stabilized psychological wellbeing, and improvements in MPAI-4 ability and participation scores; in addition to improvements in SPRS occupational activity and living skills scores. Conclusion: A designated ABI TRS may improve the transition from hospital to home, and could form an important part of the brain injury rehabilitation continuum, between the inpatient and community setting.
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Lesiones Encefálicas , Ansiedad , Estudios de Cohortes , Humanos , Alta del Paciente , Estudios RetrospectivosRESUMEN
PURPOSE: Trajectories of Rehabilitation across Complex Environments (TRaCE), a consented prospective cohort study, addresses a critical need to better understand access to the healthcare system after acute treatment and specialist inpatient rehabilitation for acquired disability. It is expected that this study will produce new knowledge on access to healthcare through the linkage of administrative, survey, and spatial datasets on the one cohort. This paper outlines the study design and baseline characteristics of the cohort. METHODS: The TRaCE cohort is comprised of 165 inpatients who are currently being followed up for 12 months after discharge from specialist rehabilitation for acquired brain injury (ABI) and spinal cord injury (SCI). This project combines a data linkage framework on health service use with a prospective survey on psychosocial wellbeing, geographical information systems to examine spatial accessibility to services, and qualitative interviews with a sub-cohort on experiences of service access. CONCLUSION: Ultimately, TRaCE will have strong translational impact on strategies for more targeted interventions to improve the healthcare system and support individuals with acquired disabilities in the long-term.
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Lesiones Encefálicas/rehabilitación , Traumatismos de la Médula Espinal/rehabilitación , Adulto , Protocolos Clínicos , Estudios de Cohortes , Personas con Discapacidad , Femenino , Accesibilidad a los Servicios de Salud , Hospitalización/estadística & datos numéricos , Humanos , Masculino , Persona de Mediana Edad , Alta del Paciente , Estudios Prospectivos , Encuestas y CuestionariosRESUMEN
BACKGROUND: Most people experience low back pain (LBP), and it is often ongoing or recurrent. Contemporary research knowledge indicates individual's pain beliefs have a strong effect on their pain experience and management. This study's primary aim was to determine the discourses (patterns of thinking) underlying people's beliefs about what causes their LBP to persist. The secondary aim was to investigate what they believed was the source of this thinking. METHODS: We used a primarily qualitative survey design: 130 participants answered questions about what caused their LBP to persist, and where they learned about these causes. We analysed responses about what caused their LBP using discourse analysis (primary aim), and mixed methods involving content analysis and descriptive statistics to analyse responses indicating where participants learnt these beliefs (secondary aim). RESULTS: We found that individuals discussed persistent LBP as 1) due to the body being like a 'broken machine', 2) permanent/immutable, 3) complex, and 4) very negative. Most participants indicated that they learnt these beliefs from health professionals (116, 89%). CONCLUSIONS: We concluded that despite continuing attempts to shift pain beliefs to more complex biopsychosocial factors, most people with LBP adhere to the traditional biomedical perspective of anatomical/biomechanical causes. Relatedly, they often see their condition as very negative. Contrary to current "best practice" guidelines for LBP management, a potential consequence of such beliefs is an avoidance of physical activities, which is likely to result in increased morbidity. That health professionals may be the most pervasive source of this thinking is a cause for concern. A small number of people attributed non-physical, unknown or complex causes to their persistent LBP - indicating that other options are possible.
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Conocimientos, Actitudes y Práctica en Salud , Personal de Salud/psicología , Dolor de la Región Lumbar/psicología , Manejo del Dolor/psicología , Pensamiento , Adulto , Estudios Transversales , Femenino , Humanos , Dolor de la Región Lumbar/etiología , Dolor de la Región Lumbar/terapia , Masculino , Persona de Mediana Edad , Narración , Manejo del Dolor/normas , Guías de Práctica Clínica como Asunto , Relaciones Profesional-Paciente , Investigación CualitativaRESUMEN
People with low back pain (LBP) seek education and information from the Internet. Existing LBP websites are often of poor quality, and disparities have been identified between patient and health-care provider evaluations of LBP websites. This study aimed to identify health-care provider perspectives on desirable content for a proposed LBP website and how this information should be presented. It complements an earlier study of LBP patient (consumer) perspectives. A qualitative descriptive study, encompassing focus groups and telephone interviews, was conducted with 42 health-care professionals practising in the LBP field. Four categories of information were identified: explaining LBP; treatment and management options; myth-busting information; and communication with health-care professionals. Presentation preferences included: use of visual media; interactivity; and useability and readability. Comparison with the consumer study identified differences with regard to: depth and breadth of diagnostic and treatment information; provision of lay person experiences and stories; and capacity for consumer-to-consumer interaction online. Views of both consumers and health-care providers are critical when developing an online LBP resource. Failure to address the needs of both stakeholder groups diminishes the potential of the resource to improve consumer outcomes.
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Información de Salud al Consumidor/normas , Internet , Dolor de la Región Lumbar/prevención & control , Femenino , Grupos Focales , Humanos , Masculino , Investigación CualitativaRESUMEN
OBJECTIVE: This study explores communications experienced by Aboriginal people in health care encounters about pain. It examines barriers that can impact upon effective pain management for Aboriginal patients. (This article refers to Aboriginal people, as these were the study participants. It is not intended to exclude Torres Strait Islander people.) DESIGN: A qualitative study using focus groups. SETTING: Two Aboriginal communities in South East Queensland. PARTICIPANTS: The participants were 20 men and 20 women who identified a health condition with associated pain for which they had sought health care, including pain relief. Their conditions included arthritis, orthopaedic injuries, back pain and coronary artery disease. RESULTS: Physical pains associated with participants' health conditions were accorded a second place to deep emotional pain attributed to dispossession, dislocation and loss. At health facilities, prominent perceptions were that health professionals held a negative attitude towards them, and lacked respect and caring. Participants experienced that the language used by health professionals in consultations was complex. CONCLUSIONS: Aboriginal people often do not report pain, on the basis of previous negative encounters with the health system. Other perceived barriers to effective pain management included discriminatory attitudes of health professionals and communication problems.
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Actitud Frente a la Salud , Nativos de Hawái y Otras Islas del Pacífico/psicología , Dolor , Población Rural , Actitud del Personal de Salud , Femenino , Grupos Focales , Personal de Salud/psicología , Humanos , Masculino , Investigación Cualitativa , QueenslandRESUMEN
BACKGROUND: Return-to-work (RTW) is often viewed as an important outcome following acquired brain injury (ABI) and spinal cord injury (SCI), although not all individuals have vocational goals and many experience barriers to RTW. OBJECTIVE: This study investigated the relationship between RTW and psychosocial functioning at 12-months post-discharge after ABI and SCI and examined patterns of RTW according to perceived need for and receipt of vocational support. METHODS: A file audit was conducted for 69 participants with ABI (nâ=â44) and SCI (nâ=â25). Data on employment status and perceived vocational support at 3- and 12-months post-discharge, home and community participation, psychological distress, and health-related quality of life were extracted. RESULTS: Individuals in paid employment at 12-months post-discharge (22%, nâ=â15) reported significantly better psychosocial functioning at this timepoint compared to those not employed (78%; nâ=â54). For those not employed, three subgroups were identified: 1) Did not perceive the need for or receive vocational support (50%; nâ=â27); 2) Perceived vocational support needs were unmet (19%; nâ=â10); and 3) Perceived and received vocational support (31%; nâ=â17). Psychological distress was highest for those who perceived and received vocational support but were not employed. CONCLUSION: RTW was associated with better psychosocial functioning after acquired neurological injury. The findings highlight the need for clinicians to explore and revisit individuals' perceived need for and preferences for vocational support and monitor the psychological well-being of those with RTW goals that are not yet successful.
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Lesiones Encefálicas , Traumatismos de la Médula Espinal , Humanos , Reinserción al Trabajo/psicología , Estudios Retrospectivos , Calidad de Vida , Cuidados Posteriores , Alta del Paciente , Rehabilitación Vocacional , Traumatismos de la Médula Espinal/complicaciones , Traumatismos de la Médula Espinal/psicologíaRESUMEN
Chronic pain is a commonly reported problem in primary care, and is Australia's third most costly health problem. Despite advances in the understanding and treatment of pain, many people with chronic pain do not receive the best available care. This paper examines the health care experiences of people with chronic pain and focuses discussion on the impact that institutional and cultural factors can have on individual experience. Unstructured narrative interviews were conducted with a convenience sample of 20 people with chronic pain. Participants' experiences pointed to several factors that can affect the outcome of the health care they receive, including: the belief that all pain is due to identifiable injury or disease; a commitment to finding a diagnosis and cure; problematic patient-provider communication; and poor integration of health services. Comprehensively addressing these factors cannot be achieved by focusing interventions at the individual level. A multifaceted response, which includes public health and systemic initiatives, is required.
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Dolor Crónico/psicología , Dolor Crónico/terapia , Comunicación , Satisfacción del Paciente , Relaciones Médico-Paciente , Adulto , Anciano , Australia , Dolor Crónico/diagnóstico , Cultura , Femenino , Servicios de Salud , Humanos , Entrevistas como Asunto , Masculino , Persona de Mediana EdadRESUMEN
PURPOSE: Specialised vocational rehabilitation (VR) following acquired brain injury (ABI) positively impacts return to work, however access to this is limited globally. Providing VR as a component of standard ABI rehabilitation may improve access to VR and influence vocational outcomes. This study aimed to develop an evidence-based framework for the delivery of ABI VR during early transitional community rehabilitation. MATERIALS AND METHODS: The development of the ABI VR framework utilised an emergent multi-phase design and was informed by models of evidence-based practice, national rehabilitation standards, guidelines for complex intervention development, model of care and framework development, and the knowledge-to-action framework. Four study phases were undertaken to identify and generate the evidence base, with findings synthesised to develop the ABI VR framework in phase five. RESULTS: The framework provides a structure for the systematic delivery of VR as a component of team-based ABI rehabilitation, through five phases of rehabilitation: assessment; goal setting and rehabilitation planning; intervention; monitoring and evaluation; and discharge. It details the activities to be undertaken across the phases using a hybrid model of ABI VR (involving program-based VR and case coordination) and contains service delivery features. CONCLUSION: The framework has the potential to translate to other similar service contexts.Implications for rehabilitation:An evidence-based framework has been developed to support the provision of vocational rehabilitation as a component of team-based rehabilitation for adults with acquired brain injury, within the context of early, community rehabilitation.Providing vocational rehabilitation as a component of team-based rehabilitation should improve access to vocational rehabilitation and may positively influence client return to work outcomes.The vocational framework may assist clinicians to identify components of vocational rehabilitation that they can deliver in practice in their own service context.
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This qualitative study aimed to explore experiences of women with persistent pain following breast cancer treatment, including their perceptions about the cause of their pain, how they manage their pain and their interactions with healthcare providers related to their pain during and following breast cancer treatment. Fourteen women who experienced pain for more than 3 months following breast cancer treatment were recruited from the general breast cancer survivorship community. Focus groups and in-depth, semi-structured interviews were conducted by one interviewer, audio-recorded, and transcribed verbatim. Transcripts were coded and analysed using Framework Analysis. Three main descriptive themes emerged from the interview transcripts: (1) characteristics of pain, (2) interactions with healthcare providers and (3) pain management. Women had various types and degrees of persistent pain, all of which they believed were related to breast cancer treatment. Most felt like they were not given enough information pre- or post-treatment and believed their experience and ability to cope with pain would have been better if they were given accurate information and advice about (the possibility of) experiencing persistent pain. Pain management strategies ranged from trial and error approaches, to pharmacotherapy, and to 'just coping with the pain". These findings highlight the importance of the provision of empathetic supportive care before, during and after cancer treatment that can facilitate access to relevant information, multidisciplinary care teams (including allied health professionals) and consumer support.
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INTRODUCTION: Services to support adults with acquired brain injury (ABI) and return to work goals are varied. In Queensland, Australia, return to work goals may be addressed through private or publicly funded rehabilitation services or through publicly funded employment programs. No set frameworks or processes are in place to guide clinicians in providing vocational rehabilitation to adults with ABI, and the extent to which services address clients' vocational goals and/or provide vocational rehabilitation is unknown. METHOD: This qualitative study investigated the clinical practice and experiences of allied health rehabilitation clinicians (n = 34) to identify current practice in providing vocational rehabilitation to adults with ABI, including pathways and services; models, frameworks and tools; and recommendations for ideal services. Focus groups and online surveys were conducted, with data analysed via content analysis. RESULTS: ABI vocational rehabilitation was inconsistently delivered within and across services in Queensland, with differences in access to services, aspects of vocational rehabilitation provided and timeframes for rehabilitation. Five key themes were identified regarding ABI vocational rehabilitation and service delivery in Queensland: Factors influencing ABI and return to work; Service provision; ABI vocational rehabilitation processes (including assessment tools and interventions); Service gaps; and Ideal ABI vocational rehabilitation services. DISCUSSION: These findings can inform clinical practice and development, and current and future service delivery models for ABI vocational rehabilitation.
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Lesiones Encefálicas , Rehabilitación Vocacional , Adulto , Humanos , Queensland , Empleo , Australia , Lesiones Encefálicas/rehabilitaciónRESUMEN
PURPOSE: This study aimed to compare stigma levels after acquired brain injury (ABI) and spinal cord injury (SCI) during the first 12-months post-discharge and investigate relationships between stigma, psychological distress and community integration. METHODS: 110 adults with ABI (55%) or SCI (45%) were recruited from brain and spinal cord injury inpatient rehabilitation units of a tertiary healthcare facility. They were administered Neuro-QOL Stigma subscale and Depression Anxiety and Stress Scales (DASS-21) at discharge, 3-months and 12-months post-discharge, and Community Integration Measure at 12-months post-discharge. RESULTS: Stigma levels did not significantly differ between individuals with ABI and SCI. However, stigma significantly decreased between discharge and 12-months post-discharge for the total sample. Stigma was positively associated with psychological distress at discharge and 3-months post-discharge, but not at 12-months post-discharge. Lower functional status and power wheelchair use were associated with higher stigma at 12-months post-discharge. Stigma at 3-months post-discharge predicted community integration at 12-months post-discharge, controlling for psychological distress and functional status. CONCLUSION: Experience of stigma in the first few months post-discharge may negatively impact individuals' community reintegration. The early post-discharge period may be a pivotal time for supporting individuals to explore disability and injury-related appraisals and enhance connection to their community.
Lower functional status and use of a power wheelchair after acquired neurological injury may increase the experience of stigma.Individuals with acquired brain injury or spinal cord injury who perceive high levels of stigma in the first few months post-discharge are more likely to experience poorer long-term community integration.The first few months post-discharge represent an important phase for health professionals to support individuals to explore their beliefs regarding disability and injury-related self-appraisals and enhance connection to their community.
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PURPOSE: Acquired brain injury (ABI) is a complex injury which impacts engagement with worker roles. Return to work (RTW) rates for individuals with brain injury are low and those who do RTW often report job instability. Vocational rehabilitation (VR) can improve RTW rates and job stability; however, service provision is varied, and no gold standard has been identified. METHODS: A systematic scoping review of the literature was completed to explore research activity in VR for individuals with ABI to address the following three questions: what models have been identified to underpin VR in ABI? What clinical processes have been identified to guide provision of VR in ABI? What components of VR have been described and/or recommended in the ABI literature? RESULTS: The number of included articles was 57. From these articles, 16 models, nine process steps, eight components, and four service delivery components were identified that were utilised in provision of ABI VR. Implications for practice are discussed. CONCLUSIONS: Key processes and components of ABI VR have been identified across a range of models and apply to clients at all phases post-injury. Findings may be used to inform service provision across a range of time points and support clinicians in their delivery of VR to adults with brain injury.Implications for RehabilitationPeople with acquired brain injury (ABI), even severe injury, can be successful with return to work (RTW) when provided appropriate supports.A wide range of models, interventions, and service components have been identified in the literature which can be used to guide clinical and policy development in ABI vocational rehabilitation.Vocational rehabilitation for individuals with brain injury involves a complex interaction of factors, and consideration should be paid to not only the person and their abilities but also job demands and the environment (physical, social, cultural).Vocational rehabilitation services should be accessible and timed to maximise chances of a successful RTW, provided by a coordinated interdisciplinary team and should involve active stakeholder engagement.
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Lesiones Encefálicas , Rehabilitación Vocacional , Adulto , Humanos , Reinserción al Trabajo , Lesiones Encefálicas/rehabilitaciónRESUMEN
PURPOSE: Little is known about obstacles to health and rehabilitation services experienced by people with acquired brain injury (ABI) over time and what impact these have on recovery. This study utilised the International Classification of Functioning, Disability, and Health model to better understand the impact of service obstacles. The aims were: (1) describe and compare service obstacles reported in the 12-months post-discharge from inpatient rehabilitation; (2) examine service obstacles as a moderator of the relationship between functional impairment and activities and participation. MATERIALS AND METHODS: Prospective survey of 41 people who received ABI inpatient rehabilitation in Queensland, Australia. Validated self-report measures of service obstacles, functional impairment, and activities and participation were administered at 6- and 12-months post-discharge. RESULTS: Transportation was the highest-rated obstacle at 6-months post-discharge, and this decreased at 12-months. Dissatisfaction with treatment resources and financial obstacles were, on average, low-to-moderate and remained constant. Specifically, the moderation analyses showed that financial obstacles may exacerbate the negative impact of functional impairment on independent living skills. CONCLUSIONS: Our findings suggest that people living in Queensland, Australia, who experience financial obstacles to services after brain injury may be at risk of poorer recovery outcomes. Rehabilitation policy should consider prioritising individuals who experience financial obstacles to accessing services.IMPLICATIONS FOR REHABILITATIONIn Queensland, Australia, financial obstacles to accessing health services after brain injury may exacerbate the negative impact of functional impairment on independent living skills, in the first 12-months after hospital discharge.There may be a need to prioritize rehabilitation policy that targets individuals who experience financial obstacles to accessing health and rehabilitation services, after brain injury, irrespective of a health system's potential to enable access.
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Lesiones Encefálicas , Personas con Discapacidad , Cuidados Posteriores , Lesiones Encefálicas/rehabilitación , Personas con Discapacidad/rehabilitación , Humanos , Alta del Paciente , Estudios ProspectivosRESUMEN
OBJECTIVE: To address how health professionals may inadvertently contribute to the stigmatization of patients with chronic pain. SETTING: Formulation and implementation of the Australian National Pain Strategy. DESIGN: Review of current concepts of stereotyping and stigma, consideration of their relationship to empathy, and how they might impinge upon the clinical encounter. FINDINGS: The extinction of empathy, which we refer to as "negative empathy," can overwhelm health professionals, allowing the entry of negative community stereotypes of chronic pain sufferers and add to their stigmatization. Prevailing dualistic frames of reference encourage this process. CONCLUSION: Greater awareness by health professionals of their own potential, often inadvertent, contribution to the stigmatization of their patients with chronic pain may serve as a basis for an expanded model of clinical engagement.
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Actitud del Personal de Salud , Dolor Crónico/psicología , Empatía , Estereotipo , Australia , Dolor Crónico/fisiopatología , Humanos , SíndromeRESUMEN
People increasingly use the internet to obtain information about health complaints, including low back pain (LBP). LBP is the leading cause of disability internationally, and outcomes are worsening. There is an urgent need for resources that aid improvement of outcomes. There have been calls to engage consumers in the development of resources, but this has rarely been implemented. MyBackPain is a website that was developed with extensive involvement of consumers to ensure that the resource meets their needs for content and presentation. This paper aimed to describe the multistep process undertaken to develop the MyBackPain website and provide an extensive evaluation of its impact. Development of MyBackPain involved 10 steps, many of which have been published in the academic literature. These steps included consultation regarding consumer needs, evaluation of existing internet resources, identification of key messages to be reinforced, identification of frequently asked questions, consensus for content, content development (including development of algorithms to guide tailoring of the user experience), development of consumer-focused evidence-based treatment summaries, development of descriptions of health care providers, and testing. Evaluation included qualitative examination of people's interactions with the website and its effects on their daily lives and an ongoing randomized controlled trial of impact of use of the site on people's LBP-related health literacy, clinical outcomes, and treatment choices. It is hoped that the website can aid in the reduction of the massive burden of LBP and provide a template for the development of resources for other conditions.
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BACKGROUND: The popularity of the Internet as a source of health-related information for low back pain (LBP) is growing. Although research has evaluated information quality in health-related websites, few studies have considered whether content and presentation match consumer preferences. OBJECTIVE: The aim of this study was to evaluate whether LBP website content and presentation matched preferences of consumers with LBP, whether matching preference of consumers changed over 8 years as recognition of people-centred healthcare has developed and whether this differs between countries of Internet searching. METHOD: The most prominent and top 20 LBP websites were identified using common search engines in 2010, 2015 and 2018. Websites identified in the top 20 in 2010 were followed up if not identified in 2015 and 2018. Two reviewers independently evaluated websites with a 16-item checklist developed from research of consumer preferences. In 2015, websites were identified using searches conducted using IP addresses from Australia, the United States of America (USA), the United Kingdom and Canada. After removal of duplicates, 55 websites were evaluated in 2010. In 2015 and 2018, 33 and 28 new sites, respectively, were identified, and 37 previous websites were re-evaluated. RESULTS: In 2010 and 2015, websites predominantly originated from USA and were sponsored by "for-profit" organisations. In 2018, most websites originated from Australian "not-for-profit" organisations. None of the websites provided information on all content areas. At least 55% of websites were rated as poor or fair. No site rated as excellent overall. There was some worsening over time. Country of search did not affect results. CONCLUSION: Websites retrieved using typical searches did not meet information and presentation preferences of people with LBP.
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Comportamiento del Consumidor , Informática Aplicada a la Salud de los Consumidores , Internet , Dolor de la Región Lumbar , Australia , Lista de VerificaciónRESUMEN
People with back pain regularly search for information online; however, the quality of this online information is often poor. We established a list of the most important messages about diagnosis, imaging, and self-care for people with low back pain, based on consensus opinion and prioritised in order of importance. A list of key messages was derived from clinical practice guidelines for back pain. During 2 survey rounds, a Delphi panel of consumers with back pain and experts rated the importance of each item and suggested additional statements. Messages were retained that were rated as important by more than 70% of the panel. Retained messages were reviewed by consumer focus groups. A priority pairwise ranking activity determined the rank order of the important messages. A final online survey determined the robustness and currency of the final list of statements. The Delphi process and consumer focus groups resulted in 30 unique messages. Experts considered that the most important messages for patients are (1) remain active and (2) reassurance that back pain is a normal experience and not necessarily related to serious harm. This differed from the preferences of people with back pain who prioritised messages related to (1) identification of more serious pathology and (2) principles of management. This list of important key messages about diagnosis, imaging, and general self-care for people with back pain can be used to inform the development of education resources, including new web sites, as well as to direct clinicians in the information they provide to patients.