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Objectives: This novel critical transdisciplinary scoping review examined the literature on integrated care pathways that consider Black people living with traumatic brain injury (TBI). The objectives were to (a) summarize the extent, nature, and range of literature on care pathways that consider Black populations, (b) summarize how Blackness, race, and racism are conceptualized in the literature, (c) determine how Black people come to access care pathways, and (d) identify how care pathways in research consider the mechanism of injury and implications for human occupation. Methods: Six databases were searched systematically identifying 178 articles after removing duplicates. In total, 43 articles on integrated care within the context of Black persons with TBI were included. Narrative synthesis was conducted to analyze the data and was presented as descriptive statistics and as a narrative to tell a story. Findings: All studies were based in the United States where 81% reported racial and ethnic disparities across the care continuum primarily using race as a biological construct. Sex, gender, and race are used as demographic variables where statistical data were stratified in only 9% of studies. Black patients are primarily denied access to care, experience lower rates of protocol treatments, poor quality of care, and lack access to rehabilitation. Racial health disparities are disconnected from racism and are displayed as symptoms of a problem that remains unnamed. Conclusion: The findings illustrate how racism becomes institutionalized in research on TBI care pathways, demonstrating the need to incorporate the voices of Black people, transcend disciplinary boundaries, and adopt an anti-racist lens to research.
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Negro ou Afro-Americano , Lesões Encefálicas Traumáticas , Atenção à Saúde , Disparidades em Assistência à Saúde , Qualidade da Assistência à Saúde , Racismo Sistêmico , Humanos , Lesões Encefálicas Traumáticas/terapia , Procedimentos Clínicos , Prestação Integrada de Cuidados de Saúde , Estados Unidos , Racismo Sistêmico/etnologia , Acessibilidade aos Serviços de Saúde , Disparidades em Assistência à Saúde/etnologia , Disparidades nos Níveis de Saúde , Atenção à Saúde/etnologiaRESUMO
Traumatic brain injuries (TBI) and mental health or substance use disorders (MHSU) are global public health concerns due to their prevalence and impact on individuals and societies. However, care for individuals with TBI and MHSU remains fragmented with a lack of appropriate services and supports across the continuum of healthcare. This systematic review provided an evidence-based foundation to inform opportunities to mobilize and adapt existing resources to integrate care for individuals with TBI and MHSU by comprehensively summarizing existing integrated activities and reported barriers and facilitators to care integration. MEDLINE, EMBASE, PsycINFO, CINAHL, Cochrane Central Register of Controlled Trials, Sociological Abstracts, and Dissertations & Theses Global were independently reviewed by two reviewers based on pre-determined eligibility criteria. Data on the integration activity, level and type of integration, reported barriers and facilitators, and the strategies aligning with the World Health Organization's (WHO) Framework on Integrated Person-Centred Care were extracted to form the basis for a narrative synthesis. Fifty-nine peer-reviewed articles were included, describing treatments (N = 49), programs (N = 4), or screening activities (N = 7). Studies discussing clinical integration at the micro- (N = 38) and meso- (N = 10) levels, service integration at the micro- (N = 6) and meso- (N = 5) levels, and functional integration at the meso-level (N = 1) were identified. A minority of articles reported on facilitators (e.g., cognitive accommodations in treatment plans; N = 7), barriers (e.g., lack of education on cognitive challenges associated with TBI; N = 2), or both (N = 6), related to integrating care. This review demonstrated that integrated TBI and MHSU care already exists across a range of levels and types. Given the finite and competing demands for healthcare resources, cognitive accommodations across treatment plans to facilitate integrated TBI and MHSU care should be considered. Multidisciplinary teams should also be explored to provide opportunities for education among health professionals so they can be familiar with TBI and MHSU. Trial registration: Prospero Registration: CRD42018108343.
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Lesões Encefálicas Traumáticas , Prestação Integrada de Cuidados de Saúde , Transtornos Relacionados ao Uso de Substâncias , Lesões Encefálicas Traumáticas/terapia , Pessoal de Saúde , Humanos , Saúde Mental , Transtornos Relacionados ao Uso de Substâncias/terapiaRESUMO
BACKGROUND: Caregiving is highly stressful and is associated with poor mental and physical health. Various technologies, including mobile and eHealth apps, have been developed to address caregiver needs. However, there is still a paucity of research examining the technology perceptions of informal caregivers, especially from the perspectives of sex, gender, and diversity. OBJECTIVE: To address the research gap and inform the development of future caregiving technologies, this study aims to examine how family caregivers perceive using technology to assist with their caregiving routines; identify the sex, gender, and diversity factors that shape these perceptions; and understand how these perceptions and needs are reflected within the current technology development process. METHODS: Semistructured interviews were conducted with 16 informal caregivers of individuals with a range of chronic medical conditions and 8 technology researchers involved in caregiving technology projects. RESULTS: Three main themes with subthemes were developed. The first main theme is that caregivers see a need for technology in their lives, and it comprises the following 3 subthemes: caregiving is a challenging endeavor, technology is multifaceted, and caregiver preferences facilitate technology use. The second main theme is that relationships play a vital role in mediating technology uptake, and it comprises the following 2 subthemes: the caregiver-care recipient dynamic shapes technology perceptions and caregivers rely on external sources for technology information. Finally, the third main theme is that barriers are present in the use and adoption of technology, and it comprises the following 2 subthemes: technology may not be compatible with personal values and abilities and technology that is not tailored toward caregivers lacks adoption. CONCLUSIONS: The findings highlight the multifaceted role that technology can play in aiding caregiving while drawing attention to the perceived drawbacks of these technologies among caregivers. The inclusion of technology researchers in this study provides a more holistic understanding of technologies in caregiving from their initial development to their eventual uptake by caregivers.
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AIM: This research synthesized scientific evidence on the impact of interventions for adults with traumatic spinal cord injury on cognition, to understand if current intervention approaches are appropriate in light of the risk of post-injury cognitive impairments. METHOD: Medline, Central, Embase, Scopus, PsycINFO and PubMed were searched for intervention in persons with SCI assessing cognition pre- and post-intervention. Study quality was completed using the National Institutes of Health quality assessment tools. Results were grouped by type of intervention. The meta-analysis involved calculation of pooled effect sizes for interventions utilizing the same cognitive measure. RESULTS: Eleven studies of moderate quality discussed drug therapy, transcutaneous tibial nerve stimulation, diet modification and dietary supplements, and inpatient rehabilitation. Some aspects of cognition were negatively affected by drugs while diet modification and supplement use, and transcutaneous tibial nerve stimulation showed no evidence of a difference in cognitive scores when compared with no intervention. Inpatient rehabilitation revealed a small but beneficial effect, when results of seven studies were pooled. CONCLUSION: Evidence on the effects of interventions on cognitive functioning in patients with traumatic spinal cord injury is sparse and inconclusive, so work in this area is timely. It is valuable to know not only which interventions are effective for improving cognition, but also how other commonly used interventions, intended to treat other injury sequela, can affect cognition. PROSPERO: CRD42018087238.Implications for rehabilitationHistorically, rehabilitation of patients with traumatic spinal cord injury has targeted physical impairments, with little attention to cognition; this research aimed to understand if current interventions are appropriate in light of the risk of patients' cognitive impairments. Evidence on the effects of drug therapy, diet and dietary supplements interventions on cognitive functioning in traumatic spinal cord injury is sparse and inconclusive.Combining multiple inpatient rehabilitation interventions shows a positive but heterogeneous effect on the cognitive functioning; interventions applied earlier show greater gains.A major challenge for clinicians is to select an outcome measure sensitive to change over time, and to relate the results to patients' change in cognitive abilities with intervention applicationResearch to understand the functional effect of spinal cord injury on the widely distributed networks of the central and autonomic nervous systems subserving cognition, is timely.
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Disfunção Cognitiva , Traumatismos da Medula Espinal , Estimulação Elétrica Nervosa Transcutânea , Adulto , Cognição , Disfunção Cognitiva/etiologia , Disfunção Cognitiva/terapia , Humanos , Traumatismos da Medula Espinal/complicaçõesRESUMO
BACKGROUND: Current understandings of the etiology of traumatic brain injury (TBI) and the trajectory of care significantly lack consideration for the inclusion of Black populations. The global prevalence of TBI is increasing, particularly in North America and Europe where approximately 65 million people are affected every year. Although community integration is an ultimate goal of rehabilitation post injury, persons with TBI, particularly Black populations continually face challenges with regards to unmet needs along the continuum of care including meaningful participation and vocation, resulting in occupational deprivation. While integrated care is seen as an appealing approach to service delivery, little is known about what this means for Black people with TBI. This protocol produces the first critical transdisciplinary (CTD) scoping review mapping the extent, range, and nature of integrated care pathways for Black people experiencing TBI. METHODS: CTD provides an analytical tool with a health equity lens that will be applied as both a methodology and theory for undertaking this review. Under the methodological guidance of Arksey and O'Malley, CTD will be used to map the literature and better understand the elements of integrated care pathways for Black people experiencing TBI. To identify the published literature, several databases will be searched including MEDLINE, EMBASE, Cochrane Central Register of Controlled Trials, CINAHL, PsycINFO, and Sociological Abstracts. DISCUSSION: The application of CTD compels health-care providers, administrators, clinician-scientists, rehabilitation specialists, and scholars in the field of TBI and integrated care to re-examine hidden assumptions about racism, racialization, and Blackness that are often embedded in current visions of health for all. The health equity lens of CTD asks about who is accounted for in the research and clinical literature and who is absented. It is anticipated that applying the health equity lens of CTD will provide a critical examination of the literature and illuminate significant implications for integrated care for Black persons experiencing TBI. SYSTEMATIC REVIEW REGISTRATION: Not applicable.
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Lesões Encefálicas Traumáticas , Prestação Integrada de Cuidados de Saúde , Negro ou Afro-Americano , Europa (Continente) , Humanos , América do Norte , Literatura de Revisão como AssuntoRESUMO
INTRODUCTION: In the most populous province of Canada, one in five adults and one in six students report a lifetime history of traumatic brain injury (TBI). These individuals were also more likely to report elevated psychological distress and use illicit substances compared with those without TBI. The need for integrated health services has been recognised globally, yet efforts to develop more comprehensive and effective care for TBI and mental health and/or addictions (MHA) continue to be challenged by the siloing of the two systems. This protocol is for a systematic review that describes the current types of integrated care for TBI and MHA and identifies the barriers and facilitators to integrating healthcare for these populations. METHODS AND ANALYSIS: This review will systematically search MEDLINE, EMBASE, PsycINFO, CINAHL, Cochrane Central Register of Controlled Trials, Sociological Abstracts, and Dissertations & Theses Global. References of eligible articles will also be searched for additional relevant studies. The search strategy will include the use of text words and subject headings relevant to the concepts 'TBI,' 'substance abuse, gambling, or mental health,' 'integrated healthcare,' 'barriers and facilitators,' and 'healthcare access.' Two reviewers will independently screen all articles based on predetermined inclusion and exclusion criteria and perform quality assessment on eligible studies. A narrative synthesis will be conducted using the data abstracted by the two reviewers. ETHICS AND DISSEMINATION: Findings from the systematic review will be published in peer-reviewed journals, presented at scientific meetings, and summarised for key stakeholders in the field of TBI and/or MHA. This protocol will form a systematic review that holds the potential to impact policy and planning in the development of integrated person-centred care for TBI and MHA and addresses a recognised gap in TBI care. TRIAL REGISTRATION NUMBER: CRD42018108343.
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Lesões Encefálicas Traumáticas/terapia , Prestação Integrada de Cuidados de Saúde/organização & administração , Acessibilidade aos Serviços de Saúde , Saúde Mental , Humanos , Revisões Sistemáticas como AssuntoRESUMO
BACKGROUND: Theatre-based interventions use artistic media to facilitate social and emotional awareness and have therapeutic benefits for persons with developmental disabilities and mental health problems. The role of these interventions with Indigenous youth who have emotional, behavioural, and cognitive sequelae related to fetal alcohol spectrum disorder (FASD) has not been explored. PURPOSE: The purpose of this study was to explore the experiences and acceptability of a theatre-based approach for facilitating social communication and engagement in youth with FASD. METHOD: Participants were three Indigenous youth with FASD. A qualitative exploration of the experiences and acceptability of the intervention was conducted via focus groups held 2 weeks post-program participation with the participants, their caregivers, and program facilitators. The transcripts were analyzed using an inductive thematic approach. FINDINGS: Our results identified perceived postintervention improvements in participants' development of self-esteem, social skills, and emotional awareness. IMPLICATIONS: A theatre-based arts intervention has the potential to support improvements in social skills for youth with FASD.
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Transtornos do Espectro Alcoólico Fetal/reabilitação , Indígenas Norte-Americanos , Terapia Ocupacional/métodos , Psicodrama/métodos , Adolescente , Canadá , Criança , Criatividade , Emoções , Feminino , Grupos Focais , Humanos , Masculino , Autoeficácia , Habilidades SociaisRESUMO
OBJECTIVE: Previous research has demonstrated the value of arts-based programs for adolescents with childhood brain disorder to facilitate social skills and participation. The current study extends this work by examining the feasibility and effectiveness of an arts-based intervention for youth with acquired brain injuries (ABI). METHODS: A case study approach was used with four adolescent participants and one case control. A battery of quantitative measures were administered four and one week pre-intervention, one week post-intervention, as well six to eight month post-intervention. RESULTS: Improvements in pragmatic communication skills and social and participation goals were observed across intervention participants. Similar improvements were not seen with the case control participant. CONCLUSION: Results support the use of an arts-based intervention for youth with ABI to facilitate social skills and participation. Findings also highlight the need for more sensitive measures of these skills for these youth. Suggested guidelines for program implementation are provided.
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Arteterapia/métodos , Lesões Encefálicas/reabilitação , Comunicação , Participação Social , Adolescente , Emoções , Estudos de Viabilidade , Feminino , Objetivos , Humanos , Masculino , Projetos Piloto , Autoimagem , Comportamento Social , Apoio SocialRESUMO
OBJECTIVE: Arts-based programmes have been shown to be useful for individuals with disturbances in cognitive and behavioural functioning. The current case studies examined the feasibility and effectiveness of a theatre skills training programme to facilitate social skills and participation for adolescents with childhood brain disorder. METHODS: A case study approach was used with two adolescent participants. Focus groups were conducted immediately post-intervention, while a battery of quantitative measures were administered pre- and post-treatment, as well as 8 months post-treatment. RESULTS: Perceived and documented improvements in social skills and participation were observed from pre- to post-intervention and at follow-up. CONCLUSION: Results support the use of an arts-based intervention for youth with brain injuries to facilitate social skills and participation. Findings also highlight the need for more sensitive measures of these skills for youth with childhood brain disorder, who may have impaired awareness of their abilities and/or impairments in memory and language comprehension.
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Arteterapia , Neoplasias Encefálicas/reabilitação , Paralisia Cerebral/reabilitação , Relações Interpessoais , Meduloblastoma/reabilitação , Comportamento Social , Adolescente , Arte , Neoplasias Encefálicas/psicologia , Paralisia Cerebral/psicologia , Estudos de Viabilidade , Feminino , Humanos , Meduloblastoma/psicologia , Resultado do TratamentoRESUMO
BACKGROUND: There is a lack of knowledge about how cultural ideas affect First Nations peoples' perception of rehabilitation needs and the ability to access services. PURPOSE: The study explored the perceptions of treating and healing brain injury from First Nations elders and traditional healers in the communities served by Wassay-Gezhig-Na-Nahn-Dah-We-lgamig (Kenora Area Health Access Centre). METHODS: A participatory action approach was used, leading to a focus group with elders and traditional healers. Findings, established through a framework analysis method, were member checked prior to dissemination. FINDINGS: Four themes arose from the data: pervasiveness of spirituality, "fixing" illness or injury versus living with wellness, working together in treating brain injury, and financial support needed for traditional healing. IMPLICATIONS: Funding is required for traditional healing services to provide culturallysafe and responsive occupational therapy services to First Nations individuals with brain injury.
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Lesões Encefálicas/etnologia , Lesões Encefálicas/reabilitação , Indígenas Norte-Americanos , Terapia Ocupacional , Lesões Encefálicas/terapia , Canadá , Feminino , Humanos , Masculino , Medicina TradicionalRESUMO
In recent years, interdisciplinary collaboration between artists and social scientists has received sustained interest from many members of the academic community. However, cross-disciplinary work is often more difficult than presumed. Epistemological and methodological differences between disciplines create barriers that may impede collaborative projects. This article explores some of the unique tensions and challenges that arose from the creation of ;After the Crash', a research-based theatre production about traumatic brain injury. Through the narrative lens of the project's dramaturg, we explore moments of interdisciplinary tension, and the possibility for the role of the dramaturg to build bridges between disparate methods of knowledge generation and translation.
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Lesões Encefálicas/psicologia , Comportamento Cooperativo , Comunicação Interdisciplinar , Psicodrama , Lesões Encefálicas/reabilitação , Cuidadores/psicologia , Coma/psicologia , Coma/reabilitação , Grupos Focais , Humanos , Capacitação em Serviço , Unidades de Terapia Intensiva , Relações Metafísicas Mente-Corpo , Relações Profissional-Paciente , Pesquisa , Ciências SociaisRESUMO
The purposes of this study were to examine the barriers to eating well experienced by women with physical disabilities and the services required to improve eating habits. Participants (mean age=48.9, SD=14.4) completed a questionnaire on health promotion behaviours (n=1096), which included a section on nutrition-related behaviours. Of the 31.8% who stated that they experienced barriers to nutrition, 88.9% wished to improve their eating habits. The most common barriers encountered were: too tired to cook (54.6%), organic/health foods too expensive (34.8%), nutritious foods too expensive (34.5%), lack of desire or will power (31.5%), government disability pension does not cover cost of food (30.6%), difficult to shop (25.1%) and not enough time for attendant to shop or prepare food (21.2%). The most common services identified to improve nutrition were: increase in disability pension (45.2%), assistance with shopping (31.3%), programs that deliver food (28.8%), increase attendant time for shopping/cooking (22.0%) and food box programs that provide single servings (20.1%). These results provide a holistic view of health-promoting behaviours in women with physical disabilities and suggest that greater emphasis should be placed on the individual in her social and structural environment when implementing programs for improving nutrition-related behaviours.