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"This is a lifesaver": co-designing a novel cyberscam psychosocial recovery intervention framework for people with acquired brain injury
Disability and Rehabilitation
Abstract
Purpose:
Despite devastating financial and psychosocial consequences, no tailored cyberscam psychosocial recovery treatments for people with acquired brain injury (ABI) exist. We aimed to 1) co-design a cyberscam psychosocial intervention framework with and for people with ABI, and 2) explore co-design process experiences of people with ABI, close others and clinicians.
Methods:
Using co-design frameworks, fifteen adults (nABI=5, nclose others= 3, nclinicians/service providers=7) participated in 20 hours of hybrid focus groups (2.5h x 8 meetings) to develop content, measures, and sustainability plans. Of these, five were part of the project team (nABI=1, nclinicians/service providers=4). Clinicians participated in eight additional meetings. Fourteen semi-structured qualitative interviews and reflexive thematic analysis explored the co-design process.
Results:
The co-designed cyberscam psychosocial adjustment intervention framework addresses cybersafety and adjustment to scam-related impacts on finances, emotions, relationships and lifestyle. Five themes were identified: "Overwhelming number of ideas"; "Value of skilled facilitation"; "Respectful and inclusive"; "Power of sharing scam experiences"; "Creating a practical scam intervention framework."
Conclusions:
A world-first co-designed cyberscam adjustment intervention framework was developed and will be piloted for feasibility and preliminary efficacy. Although co-designing interventions is complex and time-intensive, it is achievable with appropriate structure and facilitation. Future co-design projects can replicate this model.
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Background Persistent changes in sexuality often follow traumatic brain injury (TBI). However, health professionals remain reticent about discussing sexuality and have reported barriers including uncertainties around whose role it is and limited educational and institutional support. This study employed a co-design and implementation process, aiming to promote team-wide behavioural change, whereby health professionals at a TBI rehabilitation unit would attempt to address sexuality with patients routinely. Methods Focus group sessions with multidisciplinary health professionals were conducted to identify barriers and enablers to behavioural change, identify areas for development, and co-design intervention options. Implementation deliverables were then finalised and provided to the team. The Theoretical Domains Framework was used to map factors influencing behaviours and the Behaviour Change Wheel was used to map interventions. Thematic analysis was used to further analyse barrier themes. Results Thirty-five barriers and eight enablers falling within 12 theoretical domains to behavioural change were identified. Thematic analysis revealed highly correlated barriers in initiating and sustaining change. Nine co-designed intervention options aligned with five intervention functions of the Behaviour Change Wheel, resulting in six final implementation deliverables. Conclusions Barriers were highly interrelated, influencing the approach to implementation deliverables. Simultaneously addressing multiple barriers could potentially alleviate discomfort associated with discussing sexuality. Concerns around initiating change were related to confidence in achieving sustainable changes. Achieving change requires organisational and team-level environmental restructuring and enablement. The next step involves evaluating the effectiveness of the co-design and implementation process in driving behavioural change and potential impacts on patient satisfaction and sexuality outcomes.
Romance scams involve cybercriminals engineering a romantic relationship on online dating platforms for monetary gain. It is a cruel form of cybercrime whereby victims are left heartbroken, often facing financial ruin. We characterize the literary landscape on romance scams, advancing the understanding of researchers and practitioners by systematically reviewing and synthesizing contemporary qualitative and quantitative evidence. The systematic review establishes influencing factors of victimhood and explores countermeasures for mitigating romance scams. We searched 10 scholarly databases and websites using terms related to romance scams. The methodology followed the Preferred Reporting Items for Systematic Reviews and Meta-analyses (PRISMA) guidelines: a total of 279 papers were screened. One hundred seven papers were assessed for eligibility, and 53 were included in the final analysis. Three main contributions were identified: common profile features and techniques used by romance scammers, countermeasures for mitigating romance scams and factors predisposing an individual to become a scammer or a victim. Despite a growing corpus of literature, the total number of empirical or experimental examinations remained limited. The paper concludes with avenues for future research and victimhood intervention strategies for practitioners, law enforcement and the industry.
The Covid-19 related lockdown of March–June 2020 in the United Kingdom (UK) may have negatively affected mood and behaviour of people with brain injuries. Conversely, there may have been beneficial effects due to reduced demand on cognition and emotional regulation. In this online survey study, care coordinators (n=19) assessed the consequences of lockdown on 130 individuals with ABI (range 3–29 clients per care co-ordinator; 10–65years+; and mostly living in residential care). The majority of reports were of no change to mood, behaviour, or social functioning (105 ratings). However, respondents reported that 88 (68 per cent) clients presented with changes: 63 clients (48 per cent) had lower mood, higher distress, and agitation, and were less engaged in usual activities; while 25 clients (19 per cent) were reported to have improved. Moreover, 13/19 (68 per cent) of respondents reported increased vulnerabilities in their clients, and 5/19 (26 per cent) reported online exploitation, controlling behaviour from partner and financial scams. These data present a mixed picture of how the first national lockdown affected people with ABI.
Objective
Studies of Australian health workforce demographics tend to be limited to single professions, a set geographic area, or based on incomplete data. This study aims to comprehensively describe changes to the demographic characteristics of Australia's regulated health professions over 6 years.Methods
Data were sourced from the Australian Health Practitioner Regulation Agency (Ahpra) registration database, and a retrospective analysis of 15 of the 16 regulated health professions between 1 July 2015 and 30 June 2021 was conducted. Variables including profession, age, gender and state/territory locations for the practitioners' principal places of practice were analysed descriptively and via appropriate statistical tests.ResultsChanges in age, gender representation, and place of practice varied significantly and in different ways across the 15 professions. The total number of registered health practitioners increased by 141 161 (22%) from 2016 to 2021. The number of registered health practitioners per 100 000 population increased by 14% from 2016, with considerable variation across the professions. In 2021, women accounted for 76.3% of health practitioners across the 15 health professions, a significant increase of 0.5% points since 2016.Conclusions
Changes to demographics, especially in ageing workforces and feminising professions, can have implications for workforce planning and sustainability. Future research could build on this demographic trend data by investigating causes or undertaking workforce supply or demand modelling.
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.
Introduction
Co-designing healthcare research and health services is becoming increasingly prominent. Co-design invites people with disability to leverage their lived experience knowledge to improve service provision, as well as ensuring meaningful and relevant research. Given the emerging nature of the use of co-design with adults with neurological disability, well-defined guidelines on best practice are yet to be developed. The aim of this scoping review is to synthesise available peer-reviewed literature which investigates the use of co-design in research and/or service development with adults who have an acquired neurological disability and live within the community. The findings of this review will help to guide future co-design practice, ensuring people with acquired neurological disability are best supported and engaged in the process.
Methods and analysis
This review will follow methodology proposed by Arksey and O’Malley and the Preferred Reporting Items for Systematic Reviews and Meta-Analysis: Extension for Scoping Reviews. Systematic electronic database searches will be conducted between the years 2000 and 2022, via MEDLINE, CINAHL, PsycINFO, Scopus and Embase. Article screening and selection will follow the five-stage framework of Arksey and O’Malley, using Covidence software to support review of each retrieved article by two independent reviewers. Final selected qualitative and/or mixed-methods studies that meet the inclusion criteria will be charted, data collated, summarised and reported. Thematic synthesis will be applied to the qualitative data extracted from these studies.
Ethics and dissemination
Ethics approval will not be required to conduct this scoping review. It is the authors’ intention for the findings of this scoping review to be made available to relevant stakeholders through open-access peer-reviewed publication and disseminated with other healthcare and research networks via translation pieces, including the development of short video summaries and practice resources.
Background:
People with an acquired brain injury (ABI) find it challenging to use social media due to changes in their cognition and communication skills. Using social media can provide opportunities for positive connection, but there is a lack of interventions specifically designed to support safe and successful social media use after ABI.
Aims:
To investigate the outcomes of completing a social media skills intervention and identify barriers and facilitators for future implementation.
Methods & procedures:
The study used a mixed-methods, pre-post-intervention design. A total of 17 adults with an ABI were recruited. Participants completed an intervention that included a short self-guided course about social media skills (social-ABI-lity course), and then participated in a private, moderated Facebook group over a 12-week period (social-ABI-lity Facebook group). Data were collected over this period through observation of group activity and weekly surveys. They were also collected on social media use and quality of life at pre-intervention, post-intervention and after 3 months. Participants provided feedback on the experience of participating in the programme via a post-intervention interview.
Outcomes & results:
At post-intervention, there were significant improvements in confidence in using Facebook (p = 0.002) and enjoyment of using Facebook to connect with others (p = 0.013). There was no significant change in reported quality of life, although participants described the multiple benefits of connection they perceived from involvement in the group. Observational data and feedback interviews were informative about the feasibility and acceptability of the intervention.
Conclusions & implications:
This pilot study provided preliminary evidence that an intervention comprising a short, self-guided training course and a private, moderated Facebook group improved outcomes for people with ABI. Key recommendations for future implementation include embedding active peer moderators within groups and taking an individualized approach to delivery of the intervention.
What this paper adds:
What is already known on the subject Research has documented the challenges that people with ABI experience in using social media, and the difficulty for rehabilitation clinicians in providing appropriate support in this field. What this paper adds to existing knowledge This pilot study reports the outcomes of people with ABI completing a short, self-guided social media skills course and participating in a private, moderated Facebook group. After the intervention, participants reported significantly increased confidence and enjoyment in using Facebook, described the benefits of connection found in the groups, and suggested potential improvements for future implementation. What are the potential or actual clinical implications of this work? With the growing use of social media for connection and participation, there is a professional obligation to address social media communication skills in cognitive-communication rehabilitation for people with ABI. The findings of this study will inform interventions and future research to assist people with ABI to build their social media skills for communication, social support and a sense of connection.
Importance:
Scam susceptibility is associated with adverse financial and health outcomes, including an increased risk of cognitive decline and dementia. Very little is known about the role of cerebrovascular pathologies with scam susceptibility.
Objective:
To examine the association of diverse cerebrovascular pathologies (globally and regionally) with scam susceptibility.
Design, setting, and participants:
This clinical-pathological cohort study included participants from 2 ongoing studies of aging that began enrollment in 1994 and 1997. In 2010, participants were enrolled in the decision-making and behavioral economics substudy and were followed up for a mean (SD) of 3.4 (2.6) years prior to death. From 1365 older persons with clinical evaluations, 69 were excluded for having dementia at baseline. From 538 older persons who died, 408 had annual assessments for scam susceptibility, cardiovascular risk burden, and cognitive function and consented to brain donation for detailed neuropathologic examination. Data were analyzed from June 2021 through September 2022.
Exposures:
Neuropathologic examination identified the presence of macroscopic and microscopic infarcts, atherosclerosis, arteriolosclerosis, cerebral amyloid angiopathy, and common neurodegenerative pathologies (Alzheimer disease, limbic-predominant age-related transactive response DNA-binding protein 43 encephalopathy, and Lewy bodies).
Results:
There was a total of 408 participants. The mean (SD) age at death was 91 (6.1) years, the mean (SD) amount of education was 15.6 (3.1) years, and 297 (73%) were women. Participants included 4 Latino individuals (1%), 7 non-Latino Black individuals (2%), and 397 non-Latino White individuals (97%). The frequency of participants with macroscopic infarcts was 38% (n = 154), microinfarcts was 40% (n = 163), and moderate to severe vessel disease; specifically, atherosclerosis was 20% (n = 83), arteriolosclerosis was 25% (n = 100), and cerebral amyloid angiopathy was 35% (n = 143). In linear regression models adjusted for demographics and neurodegenerative pathologies, macroscopic infarcts were associated with greater scam susceptibility (estimate [SE], 0.18 [0.07]; P = .009). This association persisted after adjusting for cardiovascular risk burden and global cognition. Regionally, infarcts localized to the frontal, temporal, and occipital lobes and thalamus were associated with greater scam susceptibility. Neither arteriosclerosis, atherosclerosis, cerebral amyloid angiopathy, nor microinfarcts were associated with scam susceptibility.
Conclusions and relevance:
Cerebrovascular pathologies, specifically cerebral infarcts, is linked with greater scam susceptibility in older adults, independent of common neurodegenerative diseases such as Alzheimer disease. Future studies examining in vivo magnetic resonance imaging markers of cerebrovascular pathologies with scam susceptibility and related decision-making outcomes will be important.
Purpose: This review presents a comprehensive evaluation of the effectiveness of routinely delivered psychological therapies across inpatient, outpatient and University-based clinics. Methods: This was a pre-registered systematic-review of studies meeting pre-specified inclusion criteria (CRD42020175235). Eligible studies were searched in three databases: MEDLINE, CINAHL and PsycInfo. Pre-post treatment (uncontrolled) effect sizes were calculated and pooled using random effects meta-analysis to generate effectiveness benchmarks. Moderator analyses were used to examine sources of heterogeneity in effect sizes. Results: Overall, 252 studies (k = 298 samples) were identified, of which 223 (k = 263 samples) provided sufficient data for inclusion in meta-analysis. Results showed large pre-post treatment effects for depression (d = 0.96, [CI 0.88-1.04], p = < 0.001, k = 122), anxiety (d = 0.8 [CI 0.71-0.9], p = < 0.001, k = 69), and other outcomes (d = 1.01 [CI 0.93-1.09], p = < 0.001, k = 158). Conclusions: This review provides support for the effectiveness of routinely delivered psychological therapy. Effectiveness benchmarks are supplied to support service evaluations across multiple settings.
Cyberscams, such as romance scams, are prevalent and costly online hazards in the general community. People with Acquired Brain Injury (ABI) may be particularly vulnerable and have greater difficulty recovering from the resultant emotional and financial hardships. In order to build capacity in the neurorehabilitation sector, it is necessary to determine whether clinicians currently encounter this issue and what prevention and intervention approaches have been found effective. This scoping study aimed to explore clinicians’ exposure to and experiences with cyberscams in their adult clients with ABI.
Method
Participants were clinicians recruited from multidisciplinary networks across Australia and New Zealand. Eligible participants ( n = 101) completed an online customised survey.
Results
More than half (53.46%) the participants had one or more clients affected by cyberscams, predominantly romance scams. Cognitive impairments and loneliness were reportedly associated with increased vulnerability. Cyberscams impacted treatment provision and were emotionally challenging for participants. No highly effective interventions were identified.
Conclusions
These findings indicate that cyberscams are a clinical issue relevant to neurorehabilitation providers, with prevalence studies now required. The lack of effective interventions identified underscores the need for the development of evidence-based prevention and treatment approaches to ultimately help people with ABI safely participate in online life.
Background:
In 2020 and 2021, people increasingly used the internet to connect socially and professionally. However, people with an acquired brain injury (ABI) experience challenges in using social media, and rehabilitation professionals have reported feeling underprepared to support them in its use. To date, no review of social media skills training to inform ABI rehabilitation has been conducted.
Objective:
This scoping review aimed to examine research on interventions addressing social media skills and safety, with a focus on people living with health conditions; free web-based resources for the general public on social media skills training; and currently available online support groups for people with ABI.
Methods:
An integrative scoping review was conducted, with a systematic search strategy applied in March and November 2020 across OvidSP (MEDLINE, AMED, PsycINFO, and Embase), Scopus, Web of Science, CINAHL, Google Scholar, Google, and Facebook. The data collected were critically appraised and synthesized to describe the key content and features of social media training resources.
Results:
This review identified 47 peer-reviewed academic articles, 48 social media training websites, and 120 online support groups for people with ABI. A key recommendation was interactive training with practical components addressing cybersafety, how to use platforms, and how to connect with others. However, no social media training resources that were relevant and accessible for people with ABI were identified.
Conclusions:
Training resources to support people with ABI in safely using social media are limited. The key content to be addressed and the features to be incorporated into web-based social media training were determined, including the need for interactive training that is co-designed and safe and incorporates practical components that support people with ABI. These findings can be used to inform the development of web-based evidence-based support for people with ABI who may be vulnerable when participating in social media.
Research on elderly financial exploitation has mostly focused on financial abuse that occurs in families and other types of trusted relationships. As such, little is known about financial frauds and scams perpetrated by strangers. Financial fraud and scam prevention activities for older adults must be promoted, for which the correlation between the psychological, social, and cognitive characteristics of their vulnerability needs to be determined. The present study aimed to determine whether cognitive decline is a risk factor for scam vulnerability in older adults. Thus, we created a scam vulnerability scale for older adults with cognitive decline and analyzed the data to reveal the correlation between them, including inhibition and executive function. We conducted an interview survey with 50 older adults with cognitive decline (average age: 79.42 years, SD: 5.44) and 51 older adults without cognitive decline (average age: 76.12 years, SD: 5.82). The interview survey included the scam vulnerability scale, psychosocial questionnaires, and neuropsychological tests. The scale included six items with a four-point Likert scale based on a previous study. Hierarchical multiple regression analysis revealed that lower scores on the Japanese version of the Alzheimer's Disease Assessment Scale–Cognitive Subscale (ADAS-Jcog; indicating higher general cognitive function) correlated with higher scam vulnerability in the cognitive decline group (β = −0.46, p < 0.001). In addition, men were found to be more vulnerable in both groups (cognitive decline group: β = −0.29, p = 0.015, cognitive non-decline group; β = −0.32, p = 0.018). Inhibition and executive function were found not to correlate significantly with scam vulnerability. These results suggest that mild cognitive decline correlates with higher scam vulnerability, whereas moderate to severe cognitive decline correlates with lower vulnerability, possibly because it makes understanding the scam attempt itself difficult. Older adults with mild cognitive decline and their families, particularly those visiting elderly care or outpatient facilities, should be notified of the scam vulnerability of older clients using the ADAS-Jcog score as an index to help them avoid victimization.
Background
Regularly updated data on stroke and its pathological types, including data on their incidence, prevalence, mortality, disability, risk factors, and epidemiological trends, are important for evidence-based stroke care planning and resource allocation. The Global Burden of Diseases, Injuries, and Risk Factors Study (GBD) aims to provide a standardised and comprehensive measurement of these metrics at global, regional, and national levels.
Methods
We applied GBD 2019 analytical tools to calculate stroke incidence, prevalence, mortality, disability-adjusted life-years (DALYs), and the population attributable fraction (PAF) of DALYs (with corresponding 95% uncertainty intervals [UIs]) associated with 19 risk factors, for 204 countries and territories from 1990 to 2019. These estimates were provided for ischaemic stroke, intracerebral haemorrhage, subarachnoid haemorrhage, and all strokes combined, and stratified by sex, age group, and World Bank country income level.
Findings
In 2019, there were 12·2 million (95% UI 11·0–13·6) incident cases of stroke, 101 million (93·2–111) prevalent cases of stroke, 143 million (133–153) DALYs due to stroke, and 6·55 million (6·00–7·02) deaths from stroke. Globally, stroke remained the second-leading cause of death (11·6% [10·8–12·2] of total deaths) and the third-leading cause of death and disability combined (5·7% [5·1–6·2] of total DALYs) in 2019. From 1990 to 2019, the absolute number of incident strokes increased by 70·0% (67·0–73·0), prevalent strokes increased by 85·0% (83·0–88·0), deaths from stroke increased by 43·0% (31·0–55·0), and DALYs due to stroke increased by 32·0% (22·0–42·0). During the same period, age-standardised rates of stroke incidence decreased by 17·0% (15·0–18·0), mortality decreased by 36·0% (31·0–42·0), prevalence decreased by 6·0% (5·0–7·0), and DALYs decreased by 36·0% (31·0–42·0). However, among people younger than 70 years, prevalence rates increased by 22·0% (21·0–24·0) and incidence rates increased by 15·0% (12·0–18·0). In 2019, the age-standardised stroke-related mortality rate was 3·6 (3·5–3·8) times higher in the World Bank low-income group than in the World Bank high-income group, and the age-standardised stroke-related DALY rate was 3·7 (3·5–3·9) times higher in the low-income group than the high-income group. Ischaemic stroke constituted 62·4% of all incident strokes in 2019 (7·63 million [6·57–8·96]), while intracerebral haemorrhage constituted 27·9% (3·41 million [2·97–3·91]) and subarachnoid haemorrhage constituted 9·7% (1·18 million [1·01–1·39]). In 2019, the five leading risk factors for stroke were high systolic blood pressure (contributing to 79·6 million [67·7–90·8] DALYs or 55·5% [48·2–62·0] of total stroke DALYs), high body-mass index (34·9 million [22·3–48·6] DALYs or 24·3% [15·7–33·2]), high fasting plasma glucose (28·9 million [19·8–41·5] DALYs or 20·2% [13·8–29·1]), ambient particulate matter pollution (28·7 million [23·4–33·4] DALYs or 20·1% [16·6–23·0]), and smoking (25·3 million [22·6–28·2] DALYs or 17·6% [16·4–19·0]).
Interpretation
The annual number of strokes and deaths due to stroke increased substantially from 1990 to 2019, despite substantial reductions in age-standardised rates, particularly among people older than 70 years. The highest age-standardised stroke-related mortality and DALY rates were in the World Bank low-income group. The fastest-growing risk factor for stroke between 1990 and 2019 was high body-mass index. Without urgent implementation of effective primary prevention strategies, the stroke burden will probably continue to grow across the world, particularly in low-income countries.
Funding
Bill & Melinda Gates Foundation.
Background
Internationally, it is expected that health services will involve the public in health service design. Evaluation of public involvement has typically focused on the process and experiences for participants. Less is known about outcomes for health services. The aim of this systematic review was to a) identify and synthesise what is known about health service outcomes of public involvement and b) document how outcomes were evaluated.
Methods
Searches were undertaken in MEDLINE, EMBASE, The Cochrane Library, PsycINFO, Web of Science, and CINAHL for studies that reported health service outcomes from public involvement in health service design. The review was limited to high-income countries and studies in English. Study quality was assessed using the Mixed Methods Appraisal Tool and critical appraisal guidelines for assessing the quality and impact of user involvement in health research. Content analysis was used to determine the outcomes of public involvement in health service design and how outcomes were evaluated.
Results
A total of 93 articles were included. The majority were published in the last 5 years, were qualitative, and were located in the United Kingdom. A range of health service outcomes (discrete products, improvements to health services and system/policy level changes) were reported at various levels (service level, across services, and across organisations). However, evaluations of outcomes were reported in less than half of studies. In studies where outcomes were evaluated, a range of methods were used; most frequent were mixed methods. The quality of study design and reporting was inconsistent.
Conclusion
When reporting public involvement in health service design authors outline a range of outcomes for health services, but it is challenging to determine the extent of outcomes due to inadequate descriptions of study design and poor reporting. There is an urgent need for evaluations, including longitudinal study designs and cost-benefit analyses, to fully understand outcomes from public involvement in health service design.
One of the presumed benefits of introducing co-production is that it will lead to a greater inclusion of citizens and vulnerable people in particular. The chapter assesses how realistic that is, by discussing how co-production changes the conditions that discourage vulnerable people from engaging with more traditional types of participation. The chapter concludes that co-production has a better chance of involving vulnerable people than traditional types of participation, especially because its relevance is more directly apparent and because it relies less on personal skills. However, it is not a cure-for-all and will never be able to involve everyone.
Background:
Billions of dollars are lost annually in health research that fails to create meaningful benefits for patients. Engaging in research co-design - the meaningful involvement of end-users in research - may help address this research waste. This rapid overview of reviews addressed three related questions, namely (1) what approaches to research co-design exist in health settings? (2) What activities do these research co-design approaches involve? (3) What do we know about the effectiveness of existing research co-design approaches? The review focused on the study planning phase of research, defined as the point up to which the research question and study design are finalised.
Methods:
Reviews of research co-design were systematically identified using a rapid overview of reviews approach (PROSPERO: CRD42019123034). The search strategy encompassed three academic databases, three grey literature databases, and a hand-search of the journal Research Involvement and Engagement. Two reviewers independently conducted the screening and data extraction and resolved disagreements through discussion. Disputes were resolved through discussion with a senior author (PB). One reviewer performed quality assessment. The results were narratively synthesised.
Results:
A total of 26 records (reporting on 23 reviews) met the inclusion criteria. Reviews varied widely in their application of 'research co-design' and their application contexts, scope and theoretical foci. The research co-design approaches identified involved interactions with end-users outside of study planning, such as recruitment and dissemination. Activities involved in research co-design included focus groups, interviews and surveys. The effectiveness of research co-design has rarely been evaluated empirically or experimentally; however, qualitative exploration has described the positive and negative outcomes associated with co-design. The research provided many recommendations for conducting research co-design, including training participating end-users in research skills, having regular communication between researchers and end-users, setting clear end-user expectations, and assigning set roles to all parties involved in co-design.
Conclusions:
Research co-design appears to be widely used but seldom described or evaluated in detail. Though it has rarely been tested empirically or experimentally, existing research suggests that it can benefit researchers, practitioners, research processes and research outcomes. Realising the potential of research co-design may require the development of clearer and more consistent terminology, better reporting of the activities involved and better evaluation.
Evaluating the intercoder reliability (ICR) of a coding frame is frequently recommended as good practice in qualitative analysis. ICR is a somewhat controversial topic in the qualitative research community, with some arguing that it is an inappropriate or unnecessary step within the goals of qualitative analysis. Yet ICR assessment can yield numerous benefits for qualitative studies, which include improving the systematicity, communicability, and transparency of the coding process; promoting reflexivity and dialogue within research teams; and helping convince diverse audiences of the trustworthiness of the analysis. Few guidelines exist to help researchers negotiate the assessment of ICR in qualitative analysis. The current article explains what ICR is, reviews common arguments for and against its incorporation in qualitative analysis and offers guidance on the practical elements of performing an ICR assessment.
Experience-based co-design (EBCD) is a quality improvement approach that is being used internationally to bring service users and health professionals together to improve healthcare experiences, systems and processes. Early evaluations and case studies of EBCD have shown promise in terms of improvements to experience and organisational processes, however challenges remain in participation around shared power and decision making, mobilisation for implementation, sustainment of improvements and measurement of outcomes. The objective of this case study was to explore the emergent issues in EBCD participation and implementation in six quality improvement projects conducted in mental health, rehabilitation, blood and bone marrow transplant, brain injury rehabilitation, urinary incontinence and intellectual disability settings by the Agency for Clinical Innovation (ACI), New South Wales, Australia (2015-2018). Methods: A two stage process of analysis was employed. The first stage involved a case to case synthesis using a variable-oriented approach. In this approach themes were identified within individual cases and compared across cases in workshops with all project leads. In the second stage the case themes were synthesised within an overarching thematic that was identified as the main challenge in effective participation and implementation in these EBCD projects. The results: themes identified in the first stage of analysis related to different methods for gathering experiences and the activities used for the co-design of improvements. Variability in service user participation within co-design workshops was also discussed. Four out of the six projects implemented improvements in full. The prominent thematic overarching all six EBCD cases was the need for guidance on capability development and co-design preparedness for all participants in co-design not only project leads. In conclusion, variability in EBCD implementation makes it difficult to identify which component parts are essential for improving experiences and services, and which of these lead to sustained changes and benefits for service users and health professionals. One way to address this is to develop a model for co-design capability and preparedness that is closely linked with a set of eight mechanisms that have been previously identified as essential to achieving change in healthcare improvement initiatives.
Experience Framework
This article is associated with the Innovation & Technology lens of The Beryl Institute Experience Framework. (http://bit.ly/ExperienceFramework) Access other PXJ articles related to this lens. Access other resources related to this lens
Image-based sexual abuse (IBSA) refers to the non-consensual creation, distribution or threatened distribution of nude or sexual images. This research examines the prevalence, nature and impacts of IBSA victimisation and perpetration in Australia. This form of abuse was found to be relatively common among respondents surveyed and to disproportionately affect Aboriginal and Torres Strait Islander people, people with a disability, homosexual and bisexual people and young people. The nature of victimisation and perpetration was found to differ by gender, with males more likely to perpetrate IBSA, and females more likely to be victimised by a partner or ex-partner.
Romance fraud affects thousands of victims globally, yet few scholars have studied it. The dynamics of relationships between victims and offenders are not well understood, and the effects are rarely discussed. This article adapts the concept of psychological abuse from studies of domestic violence to better understand romance fraud. Using interviews with 21 Australian romance fraud victims, we show how offenders use non-violent tactics to ensure compliance with ongoing demands for money. This article identifies similarities and differences between domestic violence and romance fraud. We argue that thinking through domestic violence and romance fraud together offerspotential benefits to both bodies of research.
Healthcare systems redesign and service improvement approaches are adopting participatory tools, techniques and mindsets. Participatory methods increasingly used in healthcare improvement coalesce around the concept of coproduction, and related practices of cocreation, codesign and coinnovation. These participatory methods have become the new Zeitgeist—the spirit of our times in quality improvement. The rationale for this new spirit of participation relates to voice and engagement (those with lived experience should be engaged in processes of development, redesign and improvements), empowerment (engagement in codesign and coproduction has positive individual and societal benefits) and advancement (quality of life and other health outcomes and experiences of services for everyone involved should improve as a result). This paper introduces Mental Health Experience Co-design (MH ECO), a peer designed and led adapted form of Experience-based Co-design (EBCD) developed in Australia. MH ECO is said to facilitate empowerment, foster trust, develop autonomy, self-determination and choice for people living with mental illnesses and their carers, including staff at mental health services. Little information exists about the underlying mechanisms of change; the entities, processes and structures that underpin MH ECO and similar EBCD studies. To address this, we identified eight possible mechanisms from an assessment of the activities and outcomes of MH ECO and a review of existing published evaluations. The eight mechanisms, recognition, dialogue, cooperation, accountability, mobilisation, enactment, creativity and attainment, are discussed within an ‘explanatory theoretical model of change’ that details these and ideal relational transitions that might be observed or not with MH ECO or other EBCD studies. We critically appraise the sociocultural and political movement in coproduction and draw on interdisciplinary theories from the humanities—narrative theory, dialogical ethics, cooperative and empowerment theory. The model advances theoretical thinking in coproduction beyond motivations and towards identifying underlying processes and entities that might impact on process and outcome.
Trial registration number
The Australian and New Zealand Clinical Trials Registry, ACTRN12614000457640 (results).
Background:
Anxiety and depression are common following traumatic brain injury (TBI), often co-occurring. This study evaluated the efficacy of a 9-week cognitive behavioral therapy (CBT) program in reducing anxiety and depression and whether a three-session motivational interviewing (MI) preparatory intervention increased treatment response.
Method:
A randomized parallel three-group design was employed. Following diagnosis of anxiety and/or depression using the Structured Clinical Interview for DSM-IV, 75 participants with mild-severe TBI (mean age 42.2 years, mean post-traumatic amnesia 22 days) were randomly assigned to an Adapted CBT group: (1) MI + CBT (n = 26), or (2) non-directive counseling (NDC) + CBT (n = 26); or a (3) waitlist control (WC, n = 23) group. Groups did not differ in baseline demographics, injury severity, anxiety or depression. MI and CBT interventions were guided by manuals adapted for individuals with TBI. Three CBT booster sessions were provided at week 21 to intervention groups.
Results:
Using intention-to-treat analyses, random-effects regressions controlling for baseline scores revealed that Adapted CBT groups (MI + CBT and NDC + CBT) showed significantly greater reduction in anxiety on the Hospital Anxiety and Depression Scale [95% confidence interval (CI) -2.07 to -0.06] and depression on the Depression Anxiety and Stress Scale (95% CI -5.61 to -0.12) (primary outcomes), and greater gains in psychosocial functioning on Sydney Psychosocial Reintegration Scale (95% CI 0.04-3.69) (secondary outcome) over 30 weeks post-baseline relative to WC. The group receiving MI + CBT did not show greater gains than the group receiving NDC + CBT.
Conclusions:
Findings suggest that modified CBT with booster sessions over extended periods may alleviate anxiety and depression following TBI.
Background
Falling victim to financial scams can have a significant impact upon social and financial wellbeing and independence. A large proportion of scam victims are older adults, but whether older victims with mild cognitive impairment (MCI) are at higher risk remains unknown.
Objective
We tested the hypothesis that older persons with MCI exhibit greater susceptibility to scams compared to those without cognitive impairment.
Methods
Seven hundred and thirty older adults without dementia were recruited from the Rush Memory and Aging Project, a community-based epidemiologic study of aging. Participants completed a five-item self-report measure of susceptibility to scams, a battery of cognitive measures, and clinical diagnostic evaluations.
Results
In models adjusted for age, education, and gender, the presence of MCI was associated with greater susceptibility to scams (B = 0.125, SE = 0.063, p-value = 0.047). Further, in analyses of the role of specific cognitive systems in susceptibility to scams among persons with MCI (n = 144), the level of performance in two systems, episodic memory and perceptual speed abilities, were associated with susceptibility.
Conclusions
Adults with MCI may be more susceptible to scams in old age than older persons with normal cognition. Lower abilities in specific cognitive systems, particularly perceptual speed and episodic memory, may contribute to greater susceptibility to scams in those with MCI.
This article examines the psychological impact of the online dating romance scam. Unlike other mass-marketing fraud victims, these victims experienced a ‘double hit’ of the scam: a financial loss and the loss of a relationship. For most, the loss of the relationship was more upsetting than their financial losses (many described the loss of the relationship as a ‘death’). Some described their experience as traumatic and all were affected negatively by the crime. Most victims had not found ways to cope given the lack of understanding from family and friends. Denial (e.g. not accepting the scam was real or not being able to separate the fake identity with the criminal) was identified as an ineffective means of coping, leaving the victim vulnerable to a second wave of the scam. Suggestions are made as to how to change policy with regards to law enforcement to deal with this crime.
Background
Conceptual frameworks are recommended as a way of applying theory to enhance implementation efforts. The Knowledge to Action (KTA) Framework was developed in Canada by Graham and colleagues in the 2000s, following a review of 31 planned action theories. The framework has two components: Knowledge Creation and an Action Cycle, each of which comprises multiple phases. This review sought to answer two questions: `Is the KTA Framework used in practice? And if so, how?¿Methods
This study is a citation analysis and systematic review. The index citation for the original paper was identified on three databases¿Web of Science, Scopus and Google Scholar¿with the facility for citation searching. Limitations of English language and year of publication 2006-June 2013 were set. A taxonomy categorising the continuum of usage was developed. Only studies applying the framework to implementation projects were included. Data were extracted and mapped against each phase of the framework for studies where it was integral to the implementation project.ResultsThe citation search yielded 1,787 records. A total of 1,057 titles and abstracts were screened. One hundred and forty-six studies described usage to varying degrees, ranging from referenced to integrated. In ten studies, the KTA Framework was integral to the design, delivery and evaluation of the implementation activities. All ten described using the Action Cycle and seven referred to Knowledge Creation. The KTA Framework was enacted in different health care and academic settings with projects targeted at patients, the public, and nursing and allied health professionals.Conclusions
The KTA Framework is being used in practice with varying degrees of completeness. It is frequently cited, with usage ranging from simple attribution via a reference, through informing planning, to making an intellectual contribution. When the framework was integral to knowledge translation, it guided action in idiosyncratic ways and there was theory fidelity. Prevailing wisdom encourages the use of theories, models and conceptual frameworks, yet their application is less evident in practice. This may be an artefact of reporting, indicating that prospective, primary research is needed to explore the real value of the KTA Framework and similar tools.
In many service design projects, co-design is seen as critical to success and a range of benefits are attributed to co-design. In this paper, we present an overview of benefits of co-design in service design projects, in order to help the people involved to articulate more precisely and realistically which benefits to aim for. Based on a literature review and a discussion of three service design projects, we identified three types of benefits: for the service design project; for the service’s customers or users; and for the organization(s) involved. These benefits are related to improving the creative process, the service, project management, or longer-term effects. We propose that the people involved
in co-design first identify the goals of the service design project and then align their co-design activities, and the associated benefits, to these goals. The paper closes with a brief discussion on the need for developing ways to monitor and evaluate whether the intended benefits are indeed realized, and the need to assess and take into account the costs and risks of co-design.
Abstract Introduction: The deleterious consequences of traumatic brain injury (TBI) impair capacity to return to many avenues of premorbid life. However, there has been limited longitudinal research examining outcome beyond five years post-injury. The aim of this study was to examine aspects of function, previously shown to be affected following TBI, over a span of 10 years. Materials and Methods: One hundred and forty one patients with TBI were assessed at two, five, and 10 years post-injury using the Structured Outcome Questionnaire. Results: Fatigue and balance problems were the most common neurological symptoms, with reported rates decreasing only slightly over the 10-year period. Mobility outcomes were good in over 75 percent, with few participants requiring aids for mobility. Changes in cognitive, communication, behavioral and emotional functions were reported by approximately 60% of the sample at all time-points. Levels of independence in activities of daily living were high over the 10-year period, and up to 70 percent return to driving. Nevertheless, approximately 40% required more support than before their injury. Only half of the sample returned to previous leisure activities and less than half were employed at each assessment time post-injury. Whilst marital status remained surprisingly stable over time, approximately 30% reported difficulties in personal relationships. Older age at injury did not substantially alter the pattern of changes over time, except in employment. Conclusions: Overall, problems that were evident at 2 years post-injury persisted until 10 years post-injury. The importance of these findings is discussed with reference to rehabilitation programs. Keywords: traumatic brain injury, functional outcome, structured outcome questionnaire.
Thematic analysis is a poorly demarcated, rarely acknowledged, yet widely used qualitative analytic method within psychology. In this paper, we argue that it offers an accessible and theoretically flexible approach to analysing qualitative data. We outline what thematic analysis is, locating it in relation to other qualitative analytic methods that search for themes or patterns, and in relation to different epistemological and ontological positions. We then provide clear guidelines to those wanting to start thematic analysis, or conduct it in a more deliberate and rigorous way, and consider potential pitfalls in conducting thematic analysis. Finally, we outline the disadvantages and advantages of thematic analysis. We conclude by advocating thematic analysis as a useful and flexible method for qualitative research in and beyond psychology.
Objectives
Although there is widespread agreement about the importance of transferring knowledge into action, we still lack high quality information about what works, in which settings and with whom. While there are a large number of models and theories for knowledge transfer interventions, the majority are untested, meaning that their applicability and relevance is largely unknown. This paper describes the development of a conceptual framework of translating knowledge into action and discusses how it can be used for developing a useful model of the knowledge transfer process.
Methods
A narrative review of the knowledge transfer literature identified 28 different models which explained all or part of the knowledge transfer process. The models were subjected to a thematic analysis to identify individual components and the types of processes used when transferring knowledge into action. The results were used to build a conceptual framework of the process.
Results
Five common components of the knowledge transfer process were identified: problem identification and communication; knowledge/research development and selection; analysis of context; knowledge transfer activities or interventions; and knowledge/research utilization. We also identified three types of knowledge transfer processes: a linear process; a cyclical process; and a dynamic multidirectional process. From these results a conceptual framework of knowledge transfer was developed. The framework illustrates the five common components of the knowledge transfer process and shows that they are connected via a complex, multidirectional set of interactions. As such the framework allows for the individual components to occur simultaneously or in any given order and to occur more than once during the knowledge transfer process.
Conclusion
Our framework provides a foundation for gathering evidence from case studies of knowledge transfer interventions. We propose that future empirical work is designed to test and refine the relevance, importance and applicability of each of the components in order to build a more useful model of knowledge transfer which can serve as a practical checklist for planning or evaluating knowledge transfer activities.
Qualitative research explores complex phenomena encountered by clinicians, health care providers, policy makers and consumers. Although partial checklists are available, no consolidated reporting framework exists for any type of qualitative design.
To develop a checklist for explicit and comprehensive reporting of qualitative studies (in depth interviews and focus groups).
We performed a comprehensive search in Cochrane and Campbell Protocols, Medline, CINAHL, systematic reviews of qualitative studies, author or reviewer guidelines of major medical journals and reference lists of relevant publications for existing checklists used to assess qualitative studies. Seventy-six items from 22 checklists were compiled into a comprehensive list. All items were grouped into three domains: (i) research team and reflexivity, (ii) study design and (iii) data analysis and reporting. Duplicate items and those that were ambiguous, too broadly defined and impractical to assess were removed.
Items most frequently included in the checklists related to sampling method, setting for data collection, method of data collection, respondent validation of findings, method of recording data, description of the derivation of themes and inclusion of supporting quotations. We grouped all items into three domains: (i) research team and reflexivity, (ii) study design and (iii) data analysis and reporting.
The criteria included in COREQ, a 32-item checklist, can help researchers to report important aspects of the research team, study methods, context of the study, findings, analysis and interpretations.
Background
People with acquired brain injury (ABI) may be more susceptible to scams owing to postinjury cognitive and psychosocial consequences. Cyberscams result in financial loss and debilitating psychological impacts such as shame and mistrust, interference with neurorehabilitation, and reduced independence. Despite these significant consequences, there are no psychological treatments to support cyberscam survivors. There is limited evidence regarding how the current workforce is addressing post-ABI cyberscams.
Objective
This study aims to understand the perspectives and needs of clinicians and service providers in addressing post-ABI cyberscams.
Methods
Overall, 20 multidisciplinary clinicians and service providers were recruited through purposive sampling across Australia. Semistructured interviews explored post-ABI scam experiences and vulnerabilities, treatments and their efficacy, and recommendations for future cybersafety recovery interventions. Reflexive thematic analysis was used.
Results
In total, 8 themes encompassing a biopsychosocial understanding of scam vulnerabilities and impacts were identified: “genuine lack of awareness: cognitive-executive difficulties”; “not coping with the loss of it all”; “needing trust and connection”; “strong reactions of trusted others”; “nothing structured to do”; “financial stress and independence”; “cyberability”; and “scammer persuasion.” Each theme informed clinical recommendations including the need to provide psychological and cognitive support, enhance financial and cybersafety skills, promote meaningful social engagement, and foster collaboration between families and clinical support teams.
Conclusions
The multifaceted range of scam vulnerabilities and impacts highlighted the need for individualized, comprehensive, and targeted treatments using a biopsychosocial approach to enable cyberscam recovery among people with ABI. These findings will guide the development of a co-designed intervention.
Background Although individuals with acquired brain injury (ABI) may be vulnerable to cyberscams, the lack of existing measures documenting cybersafety behaviours in people with ABI limits our understanding of ABI-specific risk factors, the frequency of this problem, and the ability to evaluate evidence-based interventions. The CyberABIlity Scale was developed to assess vulnerability in people with ABI via self-rated statements and practical scam-identification tasks. This study aimed to develop and refine The CyberABIlity Scale through feedback from clinicians and people with ABI. Methods Scale feedback was collected via three rounds of clinician surveys (n = 14) using Delphi methods and two rounds of cognitive interviews with participants with ABI (n = 8). Following each round, feedback was quantitatively and qualitatively summarised, and revisions were made accordingly. Results Key revisions included removing 12 items deemed irrelevant. Instructions and rating scales were revised to improve clarity. Cognitive interviews identified 15 comprehension errors, with further revisions made to support response clarity for participants with ABI. Clinicians and participants with ABI endorsed the content and face validities of The CyberABIlity Scale. Conclusions Following further validation, The CyberABIlity Scale has the potential to be an effective screening measure for online vulnerability for people with ABI within clinical and research settings.
Purpose:
Whilst anyone can be scammed, individuals with acquired brain injury (ABI) may have unique risk factors to cyberscams for which tailored interventions are required. To address this, a co-design approach was utilised to develop cybersafety resources with people with living experience of ABI and scams. This study aimed to evaluate the co-design experience to inform future utilisation of co-design methods.
Method:
Semi-structured qualitative interviews explored perceived benefits and challenges, level of support and the co-design process for people with ABI (n= 7) and an attendant care worker (ACW) (n= 1). Transcripts were analysed using a six-stage reflexive thematic analysis.
Results:
Five themes were identified: "An Intervention Addressing Shame"; "Feeling Validated and Valued"; "Experiencing a 'Profound Change Amongst a Group of Peers'"; 'Gaining Stronger Scam Awareness'; and 'Taking Ownership'. Adjustments to support communication, memory impairments and fatigue in the co-design process were recommended.
Conclusions:
Participant reflections on the co-design process extended beyond resource design and highlighted therapeutic benefits of increased insight and emotional recovery from shame. Likely mechanisms underpinning these benefits were the peer group format and opportunities to make meaningful contributions. Despite identified challenges in facilitating co-design projects, the practical and emotional benefits reported by participants underscore the value of co-design with people with ABI. Implications for rehabilitationIndividuals with acquired brain injury (ABI) may be at increased risk of cyberscams due to cognitive impairments, for which tailored cyberscam interventions are required.Using a co-design approach maximises the relevance of training resources for individuals with ABI.Using a collaborative co-design approach to developing cybersafety training resources may facilitate scam awareness and peer support.Support for communication, memory impairments and fatigue may be necessary in co-design efforts with people with ABI.
To document the development and clinician evaluation of a psychoeducational and support tool: the return to work after traumatic brain injury app (RTW after TBI app). Co-design of the app involved the collaboration of traumatic brain injury (TBI) /vocational rehabilitation (VR) expert researchers (n = 4) and lived experience co-designers (individuals with TBI who had previously returned to work; n = 4). Twelve TBI/VR clinician reviewers then evaluated the app. Content analysis of TBI/VR clinician reviewers' interviews revealed four themes: content, usability (functional ease of use), utility (applicability to RTW after TBI) and suggestions for improvements. All clinicians reported that they would use the RTW after TBI app in their clinical practice. Although several aspects were reported to potentially limit the app's appropriateness for some TBI clients, many feasible improvements were suggested to address limitations. These improvements aim to increase the utility of the app with a wider range of clients and extend its use to other settings. Future research should evaluate, in a clinical trial, the efficacy of the RTW after TBI app in supporting individuals with TBI and their vocational providers and optimizing RTW success.
Individuals with acquired brain injury (ABI) may be vulnerable to cyberscams due to their cognitive and psychosocial impairments. However, the lived experiences of cyberscam survivors with ABI and their close others is not understood, and no effective intervention has been identified. This qualitative study aimed to explore the perspectives of cyberscam survivors with ABI (n = 7) and their close others (n = 6). Semi-structured interviews explored the scam experience, impacts, vulnerabilities and interventions. Reflexive thematic analysis of interview transcripts identified seven themes: “who is at the helm?: vulnerabilities,” “the lure: scammer tactics,” “scammers aboard: scam experience,” “the discovery,” “sinking in: impacts,” “responding to the mayday: responses from others,” and “lifesavers: suggestions for intervention.” The journey towards scam victimisation was complex, and complicated by the ABI. Cyberscams contributed to substantial financial disadvantage, loss of trust and shame. ABI related impairments and social isolation reportedly increased scam vulnerability and interfered with intervention attempts by family and professionals. Confusion, denial and disbelief created further barriers to discovery. The practical and emotional impacts on both cyberscam survivors with ABI and their family members, and a lack of effective intervention, highlight the need for increased education and awareness in order to improve online safety for those with ABI.
Developing a universal quality standard for thematic analysis (TA) is complicated by the existence of numerous iterations of TA that differ paradigmatically, philosophically and procedurally. This plurality in TA is often not recognised by editors, reviewers or authors, who promote ‘coding reliability measures’ as universal requirements of quality TA. Focusing particularly on our reflexive TA approach, we discuss quality in TA with reference to ten common problems we have identified in published TA research that cites or claims to follow our guidance. Many of the common problems are underpinned by an assumption of homogeneity in TA. We end by outlining guidelines for reviewers and editors – in the form of twenty critical questions – to support them in promoting high(er) standards in TA research, and more deliberative and reflexive engagement with TA as method and practice.
Psychological distress is common in persons with traumatic brain injury (TBI) but treatments remain underdeveloped. This randomized controlled trial of Acceptance and Commitment Therapy (ACT) was designed to address this gap. Ninety-three persons with medically-documented complicated mild to severe TBI, normal-to-mildly impaired memory, and clinically significant psychological distress in the chronic phase of recovery were randomized to receive eight weeks of ACT (manualized with adaptations to address TBI-related cognitive impairments) or a single session of needs assessment, brief counseling/education, and referral. The ACT group showed significantly greater reduction of psychological distress (Brief Symptom Inventory 18) and demonstrated improvements in psychological flexibility and commitment to action (Acceptance and Action Questionnaire-II (AAQ-II) scores). The number of treatment responders (post-treatment BSI 18 GSI T scores <63) was larger in the ACT group than in the control group. Entry of AAQ-II scores into the model of between-group differences in BSI 18 GSI T scores indicated that core ACT processes explained the variance in treatment group outcomes. Provision of ACT reduces psychological distress in persons with TBI in the chronic phase of recovery when adaptations are made to accommodate TBI-related cognitive impairments. Additional clinical trials with a structurally equivalent control group are needed.
Background
Experience-based codesign (EBCD) is an approach to health service design that engages patients and healthcare staff in partnership to develop and improve health services or pathways of care. The aim of this systematic review was to examine the use (structure, process and outcomes) and reporting of EBCD in health service improvement activities.
Methods
Electronic databases (MEDLINE, CINAHL, PsycINFO and The Cochrane Library) were searched to identify peer-reviewed articles published from database inception to August 2018. Search terms identified peer-reviewed English language qualitative, quantitative and mixed methods studies that underwent independent screening by two authors. Full texts were independently reviewed by two reviewers and data were independently extracted by one reviewer before being checked by a second reviewer. Adherence to the 10 activities embedded within the eight-stage EBCD framework was calculated for each study.
Results
We identified 20 studies predominantly from the UK and in acute mental health or cancer services. EBCD fidelity ranged from 40% to 100% with only three studies satisfying 100% fidelity.
Conclusion
EBCD is used predominantly for quality improvement, but has potential to be used for intervention design projects. There is variation in the use of EBCD, with many studies eliminating or modifying some EBCD stages. Moreover, there is no consistency in reporting. In order to evaluate the effect of modifying EBCD or levels of EBCD fidelity, the outcomes of each EBCD phase (ie, touchpoints and improvement activities) should be reported in a consistent manner.
Trial registration number
CRD42018105879.
Although it is now widely recognised that social cognitive difficulties are often evident following stroke, important questions remain about the nature and magnitude of these difficulties, as well as the factors that determine the magnitude of this impairment. A meta-analysis of 58 datasets involving 2567 participants (937 with stroke, 1630 non-clinical controls) was therefore conducted. The results indicated that three of the four core domains of social cognitive function were significantly disrupted in people with stroke. Specifically, while the effect size for affective empathy failed to attain significance (r =-.33), moderate to large deficits were identified for theory of mind (r =-.44), social perception (r =-.55), and social behaviour (r =-.53). These deficits were robust across both left and right lateralized lesions, across social cognitive assessments that differed in their broader cognitive demands, as well as in tasks that varied in their modality of presentation. These data are discussed in the context of broader neuropsychological models of social cognitive function.
The impact of fraud on an individual victim can have devastating consequences. Not only do victims experience a financial loss, but in many cases the impacts extend to their physical health and emotional wellbeing as well potentially enduring relationship breakdown, unemployment, homelessness and in extreme cases, suicide or suicide ideation. Despite the prevalence of fraud victimisation globally, and its severe consequences, there are limited support services available to victims to assist with their recovery.
This article explores a case study of an Australian jurisdiction and the establishment of a face-to-face peer support group targeted exclusively at fraud victims. Based on interviews with fraud victims prior to the commencement of the support group and then one year after the establishment of the support group, this article highlights both the benefits and challenges of this peer support model. Though exploratory in nature, the article concludes with the need to provide greater levels of support to fraud victims and considers the role of face-to-face peer support groups as a means to achieve this.
A concerted e ort to tackle the global health problem posed by traumatic brain injury (TBI) is long overdue. TBI is a public health challenge of vast, but insu ciently recognised, proportions. Worldwide, more than 50 million people have a TBI each year, and it is estimated that about half the world’s population will have one or more TBIs over their lifetime. TBI is the leading cause of mortality in young adults and a major cause of death and disability across all ages in all countries, with a disproportionate burden of disability and death occurring in low-income and middle-income countries (LMICs). It has been estimated that TBI costs the global economy approximately $US400 billion annually. De ciencies in prevention, care, and research urgently need to be addressed to reduce the huge burden and societal costs of TBI. This Commission highlights priorities and provides expert recommendations for all stakeholders— policy makers, funders, health-care professionals, researchers, and patient representatives—on clinical and research strategies to reduce this growing public health problem and improve the lives of people with TBI.
The epidemiology of TBI is changing: in high-income countries, the number of elderly people with TBI is increasing, mainly due to falls, while in LMICs, the burden of TBI from road tra c incidents is increasing. Data on the frequency of TBI and TBI-related deaths and on the economic impact of brain trauma are often incomplete and vary between countries. Improved, accurate epidemiological monitoring and robust health- economic data collection are needed to inform health- care policy and prevention programmes. Highly developed and coordinated systems of care are crucial for management of patients with TBI. However, in practice, implementation of such frameworks varies greatly and disconnects exist in the chain of care. Optimisation of systems of care should be high on the policy agenda and could yield substantial gains in terms of both patient outcomes and costs to society.
TBIisacomplexcondition,andstrongevidenceto support treatment guidelines and recommendations is scarce. Most multicentre clinical trials of medical and surgical interventions have failed to show e cacy, despite
promising preclinical results. At the bedside, treatment strategies are generally based on guidelines that promote a one-size- ts-all approach and are insu ciently targeted to the needs of individual patients. Attempts to individualise treatment are challenging owing to the diversity of TBI, and are hampered by the use of simplistic methods to characterise its initial type and severity. Advances in genomics, blood biomarkers, magnetic resonance imaging (MRI), and pathophysiological monitoring, combined with informatics to integrate data from multiple sources, o er new research avenues to improve disease characterisation and monitoring of disease evolution. These tools can also aid understanding of disease mechanisms and facilitate targeted treatment strategies for individual patients.
Individualised management in the postacute phase and evaluation of the e ectiveness of treatment and care processes depend on accurate quanti cation of outcomes. In practice, however, the use of simplistic methods hinders e orts to quantify outcomes after TBI of all severities. Development and validation of multidimensional approaches will be essential to improve measurement of clinical outcomes, for both research and patient care. In particular, we need to nd better ways to characterise the currently under-recognised risk of long-term disabling sequelae in patients with relatively mild injuries.
Prognostic models are important to help clinicians to provide reliable information to patients and relatives, and tofacilitatecomparativeauditofcarebetweencentresand countries.Thereisanurgentneedforfurtherdevelopment, validation, and implementation of prognostic models in TBI, particularly for less severe TBI.
This multitude of challenges in TBI—encompassing systems of care, clinical management, and research strategy—demands novel approaches to the generation of new evidence and its implementation in clinical practice. Comparative e ectiveness research (CER) o ers opportunities to capitalise on the diversity of TBI and systems of care and enables assessment of therapies in real-world conditions; high-quality CER studies can provide strong evidence to support guideline recommendations. The global challenges posed by TBI necessitate global collaborations and a change in research culture to endorse broad data sharing.
This Commission covers a range of topics that need to
be addressed to confront the global burden of TBI and
reduce its effects on individuals and society: epidemiology
(section 1); health economics (section 2); prevention
(section 3); systems of care (section 4); clinical management
(section 5); characterisation of TBI (section 6); outcome
assessment (section 7); prognosis (section 8); and new
directions for acquiring and implementing evidence
(section 9). Table 1 summarises key messages from the
Commission and provides recommendations to advance
clinical care and research in TBI.
We must increase awareness of the scale of the
challenge posed by TBI. If we are to tackle the individual
and societal burden of TBI, these efforts need to go
beyond a clinical and research audience and address the
public, politicians, and other stakeholders. We need to
develop and implement policies for better prevention and
systems of care in order to improve outcomes for
individuals with TBI. We also need a commitment to
substantial long-term investment in TBI research across
a range of disciplines to determine best practice and
facilitate individualised management strategies. A
combination of innovative research methods and global
collaboration, and ways to effectively translate progress in
basic and clinical research into clinical practice and public
Crime is undergoing a metamorphosis. The online technological revolution has created new opportunities for a wide variety of crimes which can be perpetrated on an industrial scale, and crimes traditionally committed in an offline environment are increasingly being transitioned to an online environment. This book takes a case study-based approach to exploring the types, perpetrators and victims of cyber frauds. Topics covered include: An in-depth breakdown of the most common types of cyber fraud and scams. The victim selection techniques and perpetration strategies of fraudsters. An exploration of the impact of fraud upon victims and best practice examples of support systems for victims. Current approaches for policing, punishing and preventing cyber frauds and scams. This book argues for a greater need to understand and respond to cyber fraud and scams in a more effective and victim-centred manner. It explores the victim-blaming discourse, before moving on to examine the structures of support in place to assist victims, noting some of the interesting initiatives from around the world and the emerging strategies to counter this problem. This book is essential reading for students and researchers engaged in cyber crime, victimology and international fraud.
In our chapter in the first edition of this Handbook (see record
1994-98625-005), we presented two tables that summarized our positions, first, on the axiomatic nature of paradigms (the paradigms we considered at that time were positivism, postpositivism, critical theory, and constructivism, p. 109, Table 6.1); and second, on the issues we believed were most fundamental to differentiating the four paradigms (p. 112, Table 6.2). These tables are reproduced here as a way of reminding our readers of our previous statements. The axioms defined the ontological, epistemological, and methodological bases for both established and emergent paradigms. The issues most often in contention that we examined were inquiry aim, nature of knowledge, the way knowledge is accumulated, goodness (rigor and validity) or quality criteria, values, ethics, voice, training, accommodation, and hegemony. An examination of these two tables will reacquaint the reader with our original Handbook treatment. Since publication of that chapter, at least one set of authors, J. Heron and P. Reason, have elaborated on our tables to include the participatory/cooperative paradigm (Heron, 1996; Heron & Reason, 1997, pp. 289-290). Thus, in addition to the paradigms of positivism, postpositivism, critical theory, and constructivism, we add the participatory paradigm in the present chapter (this is an excellent example, we might add, of the hermeneutic elaboration so embedded in our own view, constructivism). Our aim here is to extend the analysis further by building on Heron and Reason's additions and by rearranging the issues to reflect current thought. (PsycINFO Database Record (c) 2012 APA, all rights reserved)
There is confusion and misunderstanding about the concepts of knowledge translation, knowledge transfer, knowledge exchange, research utilization, implementation, diffusion, and dissemination. We review the terms and definitions used to describe the concept of moving knowledge into action. We also offer a conceptual framework for thinking about the process and integrate the roles of knowledge creation and knowledge application. The implications of knowledge translation for continuing education in the health professions include the need to base continuing education on the best available knowledge, the use of educational and other transfer strategies that are known to be effective, and the value of learning about planned-action theories to be better able to understand and influence change in practice settings.
( This reprinted article originally appeared in Science, 1977, Vol 196[4286], 129–236. The following abstract of the original article appeared in PA, Vol 59:1423. ) Although it seems that acceptance of the medical model by psychiatry would finally end confusion about its goals, methods, and outcomes, the present article argues that current crises in both psychiatry and medicine as a whole stem from their adherence to a model of disease that is no longer adequate for the work and responsibilities of either field. It is noted that psychiatrists have responded to their crisis by endorsing 2 apparently contradictory positions, one that would exclude psychiatry from the field of medicine and one that would strictly adhere to the medical model and limit the work of psychiatry to behavioral disorders of an organic nature. Characteristics of the dominant biomedical model of disease are identified, and historical origins and limitations of this reductionistic view are examined. A biopsychosocial model is proposed that would encompass all factors related to both illness and patienthood. Implications for teaching and health care delivery are considered.
Records in the Mayo Clinic linkage system were reviewed to determine the incidence of head trauma in Olmsted County, Minnesota, from 1935-1974. Minimum criteria for inclusion--loss of consciousness, posttraumatic amnesia, or skull fracture--were met by 3587 cases. During the decade from 1965-1974, the age-adjusted incidence rates per 100,000 population were 270 in males and 116 in females. The rate was highest--658--in males aged 15 to 24, but it was at least 50 in all age and sex groups. Major causes of head injury were automobile accidents (37%) and falls (29%). The incidence of head injuries related to automobiles and recreation has been increasing, whereas most other categories have remained stable or have declined. Of all cases, 446 were fatal, the average annual incidence being 32 per 100,000 in males and 9 per 100,000 in females. Among the groups at high risk of head trauma are those who have had head trauma previously.
Craig Hospital and the Colorado Department of Public Health and Environment began designing a population-based follow-up system for persons with traumatic brain injury (TBI) in 1994. With funding from the Centers for Disease Control and Prevention, the Colorado TBI Follow-up System addresses the issue, "What happens to persons with TBI after they are discharged from the hospital?" Two methods of data collection are used, medical record review and annual telephone surveys to gather long-term outcomes. The design calls for following all persons hospitalized with severe TBI (defined as any person with inpatient rehabilitation and/or with an Abbreviated Injury Scale [AIS] score for the head of 3 or greater) and a 20% random sample of persons hospitalized with less severe TBI. An expert panel was used to select variables for retrospective abstracting and prospective interviewing. Information obtained from medical records includes data verifying eligibility, diagnoses, radiological results, circumstances of injury, and severity of injury, as well as demographic data. The interview instrument includes questions and scales related to health status, disability, handicap, quality of life, and service utilization. Both methods of data collection have been pilot-tested and are now used routinely in the Colorado TBI Follow-up System.