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BACKGROUND: Historically, researchers have been apt at conducting research on, rather than with, the people who are the focus of their efforts. Such approaches often fail to effectively support and benefit the populations they are intended to. This study aimed to explore the preferences of people with lived experience for engagement with research either as research participants within studies, or through active involvement in mental health research. METHODS: Data for this paper were collected in three separate lived experience agenda-setting studies conducted over a 9-year period from 2013 to 2022; two group discussions and an open-ended online survey. Data were combined and thematic analysis undertaken. RESULTS: Participants described the inclusion of lived experience as a critical ingredient and the highest level of knowledge and expertise in mental health research that should lead to knowledge generation and research agendas. Participants discussed the importance and value of research that enables sharing experiences and stories, expressed a need for flexibility in research methods for choice and agency, and support for greater active involvement of people with lived experience across all stages of research. Participants also spoke to the need for perspective and knowledge generated from people with lived experience to have equal power in research, making space for lived experience voices across multiple aspects of research, and greater respect and recognition of the value of lived experience. CONCLUSION: Lived experience in mental health research is coming of age, but dedicated, cocreated development is needed to get it right. People with lived experience increasingly understand the value their experiential knowledge brings to the mental health research effort, and describe a wide range of ways that researchers can support them to be research participants, and to get actively involved. Power-sharing, respect and recognition of lived experience as central to effective mental health research are the keys to 'keeping it real'. PATIENT OR PUBLIC CONTRIBUTION: People with lived experience of mental health problems or distress either personally, and/or as carers, family and kinship group members, were involved in the coideation and codesign of this research. All authors identify as people with lived experience.
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Salud Mental , Investigación Cualitativa , Humanos , Australia , Femenino , Masculino , Adulto , Persona de Mediana Edad , Encuestas y Cuestionarios , Participación del Paciente/psicología , Prioridad del Paciente/psicología , Sujetos de Investigación/psicologíaRESUMEN
INTRODUCTION AND AIMS: Stroke survivors with aphasia (impaired language/communication) have poor outcomes and gaps in the clinical implementation of best practice contribute to this. Little is known, however, about speech pathologist perspectives on the touchpoints (key moments shaping experiences) in the clinical care pathway that have the greatest impact on service delivery nor how this varies by geographical location. We explored the experiences of speech pathologists who provide aphasia services to establish priorities for improvement and design. METHODS AND ANALYSIS: This is the initial experience gathering and priority identification stage of an experience-based co-design (EBCD) project. Speech pathologists were recruited from 21 geographically diverse Hospital and Health Services in Queensland, Australia. Speech pathologists working in acute, rehabilitation and community services shared positive and negative experiences of delivering aphasia care in interviews and focus groups. Experiential data were analysed using qualitative thematic analysis to determine touchpoints. Priorities for service design were identified using an adapted nominal group technique. RESULTS: Speech pathologists (n = 62) participated in 16 focus groups and nine interviews and shared 132 experiences of delivering aphasia care. Providing care in teams with poor awareness of the impacts of aphasia was identified as a key challenge, as poor patient-provider communication was perceived to increase risk of adverse outcomes for patients. Speech pathologists identified areas for improvement related to their own professional needs (e.g., greater access to clinical supervision); collaborative health care (e.g., better coordination and interdisciplinary care to increase therapy time); and the service context and environment (e.g., psychological services able to support diverse communication needs). CONCLUSIONS: Speech pathologist delivery of aphasia services could be improved through increased access to clinical supervision, opportunities for peer debriefing and interdisciplinary care. Priorities for service design varied by geographical location and included: education to support care transitions (remote areas), improved referral pathways and service linkage (regional areas) and dedicated aphasia staffing (metropolitan areas). PATIENT OR PUBLIC CONTRIBUTION: A consumer advisory committee comprising people with aphasia (n = 3, authors K.M., K.D. and B.A.), their significant others (n = 2, authors J.D. and P.M.), and a Cultural Capability Officer (author G.B.) guided this research. The team: (1) reviewed participant information; (2) co-designed surveys and workshop resources; (3) copresented research outcomes and contributed to publications. Research questions and study design (e.g., analysis methods and assessment measures) were developed by the research team (authors L.A., V.J.P., D.A.C. and S.J.W.).
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Afasia , Grupos Focales , Investigación Cualitativa , Patología del Habla y Lenguaje , Humanos , Afasia/terapia , Queensland , Entrevistas como Asunto , Femenino , Masculino , Accidente Cerebrovascular/terapia , Accidente Cerebrovascular/complicacionesRESUMEN
OBJECTIVE: People with post-stroke aphasia (language/communication impairment) and their supporters report mixed satisfaction with stroke and aphasia care. To date, however, their journey of care and the key service interactions that shape their experience have not been comprehensively explored. We aimed to investigate the lived experience of post-stroke aphasia care, across the continuum of care and by geographical location, to establish priorities for service design. DESIGN: This is the first stage of an experience-based co-design study. We purposively sampled people with aphasia (PWA) and significant others (SOs) across 21 hospital and health service sites, community groups and by self-referral. Participants shared experiences of care in online interviews and focus groups. Touchpoints (key moments that shape experience) and unmet needs were identified using qualitative thematic analysis. Priorities for service design were established using an adapted nominal group technique. SETTING: Sites spanned remote, regional and metropolitan areas in Queensland, Australia. PARTICIPANTS: PWA (n=32; mild=56%; moderate=31%; severe=13%) and SOs (n=30) shared 124 experiences of acute, rehabilitation and community-based care in 23 focus groups and 13 interviews. RESULTS: Both positive and negative healthcare experiences occurred most frequently in hospital settings. Negative experiences regularly related to communication with health professionals, while positive experiences related to the interpersonal qualities of healthcare providers (eg, providing hope) for PWA, or witnessing good rapport between a PWA and their health professional for SOs. To improve services, PWA prioritised communicatively accessible education and information and SOs prioritised access to psychological and peer support. CONCLUSIONS: We identified key aspects of post-stroke aphasia care that shape experience. The needs of PWA and SOs may be better met through health professional training in supported communication, increased service availability in regional and remote areas, communication-accessible hospital environments, increased access to psychological and peer support, and meaningful involvement of SOs in rehabilitation.
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Afasia , Grupos Focales , Rehabilitación de Accidente Cerebrovascular , Accidente Cerebrovascular , Humanos , Afasia/etiología , Afasia/rehabilitación , Afasia/terapia , Femenino , Masculino , Persona de Mediana Edad , Anciano , Accidente Cerebrovascular/complicaciones , Rehabilitación de Accidente Cerebrovascular/métodos , Queensland , Adulto , Investigación Cualitativa , Necesidades y Demandas de Servicios de Salud , Anciano de 80 o más Años , Satisfacción del PacienteRESUMEN
BACKGROUND: Priority setting in mental health research is arguably lost in translation. Decades of effort has led to persistent repetition in what the research priorities of people with lived-experience of mental ill-health are. AIM: This was a narrative review and synthesis of published literature reporting mental health research priorities (2011-2023). METHODS: A narrative framework was established with the questions: (1) who has been involved in priority setting? With whom have priorities been set? Which priorities have been established and for whom? What progress has been made? And, whose priorities are being progressed? RESULTS: Seven papers were identified. Two were Australian, one Welsh, one English, one was from Chile and another Brazilian and one reported on a European exercise across 28 countries (ROAMER). Hundreds of priorities were listed in all exercises. Prioritisation mostly occured from survey rankings and/or workshops (using dots, or post-it note voting). Most were dominated by clinicians, academics and government rather than people with lived-experience of mental ill-health and carer, family and kinship group members. CONCLUSION: One lived-experience research led survey was identified. Few studies reported lived-experience design and development involvement. Five of the seven papers reported responses, but no further progress on priorities being met was reported.
This review followed PRISMA guidance for search strategy development and systematic review and reporting. This was not a systematic review with or without meta-analysis and the method did not fit for registration with PROSPERO.
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There is increased recognition that people with lived-experience of mental ill-health ought to be centred in research design, implementation and translation, and quality improvement and program evaluation of services. There is also an increased focus on ways to ensure that co-design processes can be led by people with lived-experience of mental ill-health. Despite this, there remains limited explanation of the physical, social, human, and economic infrastructure needed to create and sustain such models in research and service settings. This is particularly pertinent for all health service sectors (across mental and physical health and social services) but more so across tertiary education settings where research generation occurs for implementation and translation activities with policy and services. The Co-Design Living Labs program was established in 2017 as an example of a community-based embedded approach to bring people living with trauma and mental ill-health and carers/family and kinship group members together with university-based researchers to drive end-to-end research design to translation in mental healthcare and research sectors. The program's current membership is near to 2000 people. This study traces the evolution of the program in the context of the living labs tradition of open innovation. It overviews the philosophy of practice for working with people with lived-experience and carer/family and kinship group members-togetherness by design. Togetherness by design centres on an ethical relation of being-for that moves beyond unethical and transactional approaches of being-aside and being-with, as articulated by sociologist Zygmunt Bauman. The retrospective outlines how an initial researcher-driven model can evolve and transform to become one where people with lived-experience of mental ill-health and carer/family kinship group members hold clear decision-making roles, share in power to enact change, and move into co-researcher roles within research teams. Eight mechanisms are presented in the context of an explanatory theoretical model of change for co-design and coproduction, which are used to frame research co-design activities and provide space for continuous learning and evolution of the Co-Design Living Labs program.
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Cuidadores , Proyectos de Investigación , Humanos , Estudios Retrospectivos , Salud Mental , Atención a la SaludRESUMEN
Objective: To evaluate a facilitated, 90-min session, delivered for four weeks, Online Carer Wellbeing and Connection Program in Victoria, Australia. Methods: One hundred and three carers took part in the evaluation. Eighty-six completed both pre- and post-program surveys evaluating program impacts on psychological distress, perceived loneliness, and social support. Qualitative interviews were conducted (n = 76) post-program for experiential data. Findings: Paired samples t-tests showed significant decreases between pre- and post-program for psychological distress (M = 25.10, SD = 7.08; M = 22.00, SD = 6.57; t(85) = 4.88, p = 0.000), perceived loneliness (M = 6.69, SD = 1.89; M = 6.14, SD = 1.76; t(85) = 3.45, p = 0.000) and perceived social support (M = 8.31, SD = 2.48; M = 8.83, SD = 2.21; t(85) = -2.54, p = 0.013). Thematic analysis identified positive experiences and the mechanisms of action (or the ingredients for program success) as: 1. Delivery by a trained facilitator; 2. Provision of respite for person being cared for during meetings; 3. Technical assistance; 4. Online modality; 5. Inclusivity; 6. Diversity of experience; 7. Shared understanding; 8. Safety; 9. Emotional release; 10. Reflection, and; 11. Self-care practices. Innovation: A model illustrating the mechanisms of action based on the findings of the mixed-methods evaluation is presented to support wider implementation and translation. Conclusion: The online program effectively reduced psychological distress and loneliness and improved carer wellbeing.
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BACKGROUND: Primary care is essential to address the unmet physical health needs of people with severe mental ill-health. Continued poor cardiovascular health demands improved screening and preventive care. No previous reviews have examined primary care cardiovascular screening rates for people living with severe mental ill-health; termed in the literature "severe mental illness". METHODS: A scoping review following Joanna Briggs Institute methodology was conducted. Cardiovascular risk factor screening rates in adults with severe mental ill-health were examined in general or family practices (as the main delivery sites of primary care). Literature published between 2001 and 2023 was searched using electronic databases including Medline, Embase, Web of Science, PsychINFO and CINAHL. Two reviewers independently screened titles and abstracts and conducted a full-text review. The term "severe mental illness" was applied as the term applied in the literature over the past decades. Study information, participant details and cardiovascular risk factor screening rates for people with 'severe mental illness' were extracted and synthesised. RESULTS: Thirteen studies were included. Nine studies were from the United Kingdom and one each from Canada, Spain, New Zealand and the Netherlands. The general and/or family practice cardiovascular disease screening rates varied considerably across studies, ranging from 0 % to 75 % for people grouped within the term "severe mental illness". Lipids and blood pressure were the most screened risk factors. CONCLUSIONS: Cardiovascular disease screening rates in primary care settings for adults living with severe mental ill-health varied considerably. Tailored and targeted cardiovascular risk screening will enable more comprehensive preventive care to improve heart health outcomes and address this urgent health inequity.
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Enfermedades Cardiovasculares , Medicina Familiar y Comunitaria , Adulto , Humanos , Enfermedades Cardiovasculares/diagnóstico , Enfermedades Cardiovasculares/epidemiología , Factores de Riesgo , Salud Mental , Factores de Riesgo de Enfermedad CardiacaRESUMEN
BACKGROUND: People experiencing cognitive concerns and symptoms of depression or anxiety are at risk for Alzheimer's disease and dementia. We know physical activity can benefit cognition but understanding how to best support engagement is an ongoing challenge. Evidence-based conceptual models of factors underpinning physical activity engagement in target populations can inform intervention tailoring to address this challenge. OBJECTIVE: This study (part of a pragmatic physical activity implementation trial) aimed to develop a specified model of physical activity engagement in people experiencing depressive or anxiety symptoms and cognitive concerns, to enable optimized dementia risk reduction intervention tailoring. METHODS: We employed a qualitative design, triangulating data from three sources: semi-structured individual interviews with people experiencing cognitive concerns and mild to moderate depressive or anxiety symptoms; review of published evidence; and the Capability, Opportunity and Motivation system of behavior, an existing behavioral science model. Findings were integrated to develop a contextualized model of mechanisms of action for optimizing engagement. RESULTS: Twenty-one participants were interviewed, and 24 relevant papers included. Convergent and complementary themes extended understanding of intervention needs. Findings highlighted emotional regulation, capacities to enact intentions despite barriers, and confidence in existing skills as areas of population-specific need that have not previously been emphasized. The final model provides specificity, directionality, and linked approaches for intervention tailoring. CONCLUSION: This study demonstrated that people experiencing cognitive concerns and symptoms of depression or anxiety require different interventions to improve physical activity engagement. This novel model can enable more precise intervention tailoring, and, ultimately, benefits for a key at-risk population.
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Demencia , Depresión , Humanos , Ansiedad , Ejercicio Físico , Cognición , Demencia/psicologíaRESUMEN
BACKGROUND: Globally, cardiovascular diseases (CVD, that is, coronary heart (CHD) and circulatory diseases combined) contribute to 31% of all deaths, more than any other cause. In line with guidance in the UK and globally, cardiac rehabilitation programmes are widely offered to people with heart disease, and include psychosocial, educational, health behaviour change, and risk management components. Social support and social network interventions have potential to improve outcomes of these programmes, but whether and how these interventions work is poorly understood. OBJECTIVES: To assess the effectiveness of social network and social support interventions to support cardiac rehabilitation and secondary prevention in the management of people with heart disease. The comparator was usual care with no element of social support (i.e. secondary prevention alone or with cardiac rehabilitation). SEARCH METHODS: We undertook a systematic search of the following databases on 9 August 2022: CENTRAL, MEDLINE, Embase, and the Web of Science. We also searched ClinicalTrials.gov and the WHO ICTRP. We reviewed the reference lists of relevant systematic reviews and included primary studies, and we contacted experts to identify additional studies. SELECTION CRITERIA: We included randomised controlled trials (RCTs) of social network or social support interventions for people with heart disease. We included studies regardless of their duration of follow-up, and included those reported as full text, published as abstract only, and unpublished data. DATA COLLECTION AND ANALYSIS: Using Covidence, two review authors independently screened all identified titles. We retrieved full-text study reports and publications marked 'included', and two review authors independently screened these, and conducted data extraction. Two authors independently assessed risk of bias, and assessed the certainty of the evidence using GRADE. Primary outcomes were all-cause mortality, cardiovascular-related mortality, all-cause hospital admission, cardiovascular-related hospital admission, and health-related quality of life (HRQoL) measured at > 12 months follow-up. MAIN RESULTS: We included 54 RCTs (126 publications) reporting data for a total of 11,445 people with heart disease. The median follow-up was seven months and median sample size was 96 participants. Of included study participants, 6414 (56%) were male, and the mean age ranged from 48.6 to 76.3 years. Studies included heart failure (41%), mixed cardiac disease (31%), post-myocardial infarction (13%), post-revascularisation (7%), CHD (7%), and cardiac X syndrome (1%) patients. The median intervention duration was 12 weeks. We identified notable diversity in social network and social support interventions, across what was delivered, how, and by whom. We assessed risk of bias (RoB) in primary outcomes at > 12 months follow-up as either 'low' (2/15 studies), 'some concerns' (11/15), or 'high' (2/15). 'Some concerns' or 'high' RoB resulted from insufficient detail on blinding of outcome assessors, data missingness, and absence of pre-agreed statistical analysis plans. In particular, HRQoL outcomes were at high RoB. Using the GRADE method, we assessed the certainty of evidence as low or very low across outcomes. Social network or social support interventions had no clear effect on all-cause mortality (risk ratio (RR) 0.75, 95% confidence interval (CI) 0.49 to 1.13, I2 = 40%) or cardiovascular-related mortality (RR 0.85, 95% CI 0.66 to 1.10, I2 = 0%) at > 12 months follow-up. The evidence suggests that social network or social support interventions for heart disease may result in little to no difference in all-cause hospital admission (RR 1.03, 95% CI 0.86 to 1.22, I2 = 0%), or cardiovascular-related hospital admission (RR 0.92, 95% CI 0.77 to 1.10, I2 = 16%), with a low level of certainty. The evidence was very uncertain regarding the impact of social network interventions on HRQoL at > 12 months follow-up (SF-36 physical component score: mean difference (MD) 31.53, 95% CI -28.65 to 91.71, I2 = 100%, 2 trials/comparisons, 166 participants; mental component score MD 30.62, 95% CI -33.88 to 95.13, I2 = 100%, 2 trials/comparisons, 166 participants). Regarding secondary outcomes, there may be a decrease in both systolic and diastolic blood pressure with social network or social support interventions. There was no evidence of impact found on psychological well-being, smoking, cholesterol, myocardial infarction, revascularisation, return to work/education, social isolation or connectedness, patient satisfaction, or adverse events. Results of meta-regression did not suggest that the intervention effect was related to risk of bias, intervention type, duration, setting, and delivery mode, population type, study location, participant age, or percentage of male participants. AUTHORS' CONCLUSIONS: We found no strong evidence for the effectiveness of such interventions, although modest effects were identified in relation to blood pressure. While the data presented in this review are indicative of potential for positive effects, the review also highlights the lack of sufficient evidence to conclusively support such interventions for people with heart disease. Further high-quality, well-reported RCTs are required to fully explore the potential of social support interventions in this context. Future reporting of social network and social support interventions for people with heart disease needs to be significantly clearer, and more effectively theorised, in order to ascertain causal pathways and effect on outcomes.
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Rehabilitación Cardiaca , Infarto del Miocardio , Masculino , Humanos , Persona de Mediana Edad , Anciano , Femenino , Rehabilitación Cardiaca/métodos , Prevención Secundaria , Infarto del Miocardio/epidemiología , Calidad de Vida , Red SocialRESUMEN
OBJECTIVE: Pandemics negatively impact healthcare workers' (HCW's) mental health and well-being causing additional feelings of anxiety, depression, moral distress and post-traumatic stress. A comprehensive review and evidence synthesis of HCW's mental health and well-being interventions through pandemics reporting mental health outcomes was conducted addressing two questions: (1) What mental health support interventions have been reported in recent pandemics, and have they been effective in improving the mental health and well-being of HCWs? (2) Have any mobile apps been designed and implemented to support HCWs' mental health and well-being during pandemics? DESIGN: A narrative evidence synthesis was conducted using Cochrane criteria for synthesising and presenting findings when systematic review and pooling data for statistical analysis are not suitable due to the heterogeneity of the studies. DATA SOURCES: Evidence summary resources, bibliographic databases, grey literature sources, clinical trial registries and protocol registries were searched. ELIGIBILITY CRITERIA: Subject heading terms and keywords covering three key concepts were searched: SARS-CoV-2 coronavirus (or similar infectious diseases) epidemics, health workforce and mental health support interventions. Searches were limited to English-language items published from 1 January 2000 to 14 June 2022. No publication-type limit was used. DATA EXTRACTION AND SYNTHESIS: Two authors determined eligibility and extracted data from identified manuscripts. Data was synthesised into tables and refined by coauthors. RESULTS: 2694 studies were identified and 27 papers were included. Interventions were directed at individuals and/or organisations and most were COVID-19 focused. Interventions had some positive impacts on HCW's mental health and well-being, but variable study quality, low sample sizes and lack of control conditions were limitations. Two mobile apps were identified with mixed outcomes. CONCLUSION: HCW interventions were rapidly designed and implemented with few comprehensively described or evaluated. Tailored interventions that respond to HCWs' needs using experience co-design for mental health and well-being are required with process and outcome evaluation.
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COVID-19 , Pandemias , Humanos , Salud Mental , SARS-CoV-2 , COVID-19/epidemiología , Personal de Salud/psicología , HospitalesRESUMEN
BACKGROUND: This paper reports on the cost-effectiveness evaluation of Link-me - a digitally supported, systematic approach to triaging care for depression and anxiety in primary care that uses a patient-completed Decision Support Tool (DST). METHODS: The economic evaluation was conducted alongside a parallel, stratified individually randomised controlled trial (RCT) comparing prognosis-matched care to usual care at six- and 12-month follow-up. Twenty-three general practices in three Australian Primary Health Networks recruited 1,671 adults (aged 18 - 75 years), predicted by the DST to have minimal/mild or severe depressive or anxiety symptoms in three months. The minimal/mild prognostic group was referred to low intensity services. Participants screened in the severe prognostic group were offered high intensity care navigation, a model of care coordination. The outcome measures included in this evaluation were health sector costs (including development and delivery of the DST, care navigation and other healthcare services used) and societal costs (health sector costs plus lost productivity), psychological distress [Kessler Psychological Distress Scale (K10)] and quality adjusted life years (QALYs) derived from the EuroQol 5-dimension quality of life questionnaire with Australian general population preference weights applied. Costs were valued in 2018-19 Australian dollars (A$). RESULTS: Across all participants, the health sector incremental cost-effectiveness ratio (ICER) of Link-me per point decrease in K10 at six months was estimated at $1,082 (95% CI $391 to $6,204) increasing to $2,371 (95% CI $191 to Dominated) at 12 months. From a societal perspective, the ICER was estimated at $1,257/K10 point decrease (95% CI Dominant to Dominated) at six months, decreasing to $1,217 (95% CI Dominant to Dominated) at 12 months. No significant differences in QALYs were detected between trial arms and the intervention was dominated (less effective, more costly) based on the cost/QALY ICER. CONCLUSIONS: The Link-me approach to stepped mental health care would not be considered cost-effective utilising a cost/QALY outcome metric commonly adopted by health technology assessment agencies. Rather, Link-me showed a trend toward cost-effectiveness by providing improvement in mental health symptoms, measured by the K10, at an additional cost. TRIAL REGISTRATION: Australian and New Zealand Clinical Trials Registry, ANZCTRN 12617001333303.
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Medicina General , Salud Mental , Adulto , Australia , Análisis Costo-Beneficio , Humanos , Años de Vida Ajustados por Calidad de VidaRESUMEN
BACKGROUND: Primary care practitioners are being called upon to work with their patients to reduce dementia risk. However, it is unclear who should do what with whom, when, and under what circumstances. OBJECTIVE: This scoping review aimed to identify clinical guidelines for dementia risk reduction (DRR) in primary care settings, synthesize the guidelines into actionable behaviors, and appraise the guidelines for specificity. METHODS: Terms related to "dementia", "guidelines", and "risk reduction" were entered into two academic databases and two web search engines. Guidelines were included if they referred specifically to clinical practices for healthcare professionals for primary prevention of dementia. Included guidelines were analyzed using a directed content analysis method, underpinned by the Action-Actor-Context-Target-Time framework for specifying behavior. RESULTS: Eighteen guidelines were included in the analysis. Together, the guidelines recommended six distinct clusters of actions for DRR. These were to 1) invite patients to discuss DRR, 2) identify patients with risk factors for dementia, 3) discuss DRR, 4) manage dementia risk factors, 5) signpost to additional support, and 6) follow up. Guidelines recommended various actors, contexts, targets, and times for performing these actions. Together, guidelines lacked specificity and were at times contradictory. CONCLUSION: Currently available guidelines allow various approaches to promoting DRR in primary care. Primary care teams are advised to draw on the results of the review to decide which actions to undertake and the locally appropriate actors, contexts, targets, and times for these actions. Documenting these decisions in more specific, local guidelines for promoting DRR should facilitate implementation.
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Demencia , Servicios de Salud , Atención Primaria de Salud , Conducta de Reducción del Riesgo , Personal de Salud , Humanos , Proyectos de InvestigaciónRESUMEN
BACKGROUND: Target-D, a new person-centred e-health platform matching depression care to symptom severity prognosis (minimal/mild, moderate or severe) has demonstrated greater improvement in depressive symptoms than usual care plus attention control. The aim of this study was to evaluate the cost-effectiveness of Target-D compared to usual care from a health sector and partial societal perspective across 3-month and 12-month follow-up. METHODS AND FINDINGS: A cost-utility analysis was conducted alongside the Target-D randomised controlled trial; which involved 1,868 participants attending 14 general practices in metropolitan Melbourne, Australia. Data on costs were collected using a resource use questionnaire administered concurrently with all other outcome measures at baseline, 3-month and 12-month follow-up. Intervention costs were assessed using financial records compiled during the trial. All costs were expressed in Australian dollars (A$) for the 2018-19 financial year. QALY outcomes were derived using the Assessment of Quality of Life-8D (AQoL-8D) questionnaire. On a per person basis, the Target-D intervention cost between $14 (minimal/mild prognostic group) and $676 (severe group). Health sector and societal costs were not significantly different between trial arms at both 3 and 12 months. Relative to a A$50,000 per QALY willingness-to-pay threshold, the probability of Target-D being cost-effective under a health sector perspective was 81% at 3 months and 96% at 12 months. From a societal perspective, the probability of cost-effectiveness was 30% at 3 months and 80% at 12 months. CONCLUSIONS: Target-D is likely to represent good value for money for health care decision makers. Further evaluation of QALY outcomes should accompany any routine roll-out to assess comparability of results to those observed in the trial. This trial is registered with the Australian New Zealand Clinical Trials Registry (ACTRN12616000537459).
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Depresión , Calidad de Vida , Australia , Análisis Costo-Beneficio , Depresión/terapia , Humanos , Atención Primaria de Salud , Pronóstico , Años de Vida Ajustados por Calidad de VidaRESUMEN
BACKGROUND: Subthreshold depression is common in primary care, but there is little information about the self-help strategies that patients use and the perceived benefits of these. AIM: This study sought to elicit the self-help strategies that primary care attendees identified as beneficial for the self-management of subthreshold depressive symptoms and the implications for general practitioners. METHOD: Semi-structured telephone interviews were conducted with 14 people (April-May 2017) from the Target-D randomised controlled trial (RCT). Target-D investigated whether using a patient-centred clinical prediction tool and an e-health platform to match mental health management options to prognosis was beneficial for improving depressive symptoms at 3 months compared to usual care. Interviews were thematically analysed to identify self-help strategies and their perceived benefits. RESULTS: Four overarching domains for the self-management strategies were identified: social, cognitive, behavioural and restorative. Interviewees reported using strategies across multiple domains, which included undertaking enjoyable, immersive activities, that provided relief from automatic negative thoughts and had a perceived cognitive benefit. Differences in the perceived sense of agency were noted around the self-regulation of mood, which indicated more explicit direction to patient-identified self-help management strategies by general practitioners for some may be of benefit in routine care. CONCLUSION: Some of the reported self-management strategies aligned with evidence-based approaches such as physical activity and mindfulness for mental health symptom management. These findings can inform low-intensity interventions within stepped care models for mental health in primary care, social prescribing models and, help to guide the management of patients by GPs for subthreshold depression.
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Depresión , Atención Primaria de Salud , Australia , Depresión/terapia , Humanos , Medición de Resultados Informados por el Paciente , Investigación Cualitativa , Ensayos Clínicos Controlados Aleatorios como AsuntoRESUMEN
Young women who experience intimate partner violence (IPV) are most likely to turn to their friends for help. Although friends can play a critical role in providing support, there is little research that examines friends' experiences. In this qualitative study, we explored how friends of young women experiencing IPV perceived their role in responding to IPV in the context of friendship. We held in-depth interviews with 15 friends of young women who had experienced IPV and used reflexive thematic analysis to develop key themes from the data. We developed two overarching themes that reflected participants' perceptions of the roles they had played or considered as a friend in responding to IPV: "taking action" (which included "providing an outsider's view," "being an advisor or coach," "being a protector," and "taking a stand"); and "being there" (which included "being a listener," "being a companion" and "being an ally"). Their perceptions were shaped by friendship expectations, as well as by understandings of IPV. However, deciding what role to play in supporting their friend was constructed as challenging due to conflicting expectations that arose in the context of friendship. It involved balancing a perceived responsibility to do what they thought was best for their friend's well-being, a need to promote honesty and mutuality in the friendship, along with a competing obligation to respect their friend's choices, maintain her trust and ensure equality in the friendship. Being friends with the abuser as well as with the victim created additional complexities. Based on our findings, we identify key areas to address in developing interventions to assist friends to respond to young women experiencing IPV. These could guide friends on how to play an effective support role while also maintaining the friendship and managing the significant emotional impacts of providing help.
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Amigos , Violencia de Pareja , Animales , Cáscara de Huevo , Emociones , Femenino , Humanos , Violencia de Pareja/psicología , Investigación CualitativaRESUMEN
Amidst public health campaigns urging people to sit less as well as being more physically active, this paper investigates how older adults make sense of their sedentary behaviour. Using an accounts framework focusing on how people rationalise their sitting practices, we analysed data from 44 qualitative interviews with older adults. All interviewees had received information about sedentary behaviour and health, visual feedback on their own objectively measured sitting over a week and guidance on sitting less. Participants used accounts to position sitting as a moral practice, distinguishing between 'good' (active/'busy') and 'bad' (passive/'not busy') sitting. This allowed them to align themselves with acceptable (worthwhile) forms of sitting and distance themselves from other people whose sitting they viewed as less worthwhile. However, some participants also described needing to sit more as they got older. The findings suggest that some public health messaging may lead to stigmatisation around sitting. Future sedentary behaviour guidelines and public health campaigns should consider more relatable guidelines that consider the lived realities of ageing, and the individual and social factors that shape them. They should advocate finding a balance between sitting and moving that is appropriate for each person.
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Promoción de la Salud , Conducta Sedentaria , Anciano , Humanos , Principios MoralesRESUMEN
INTRODUCTION: Aphasia is an impairment of language that occurs in 30%-40% of stroke survivors. This often chronic condition results in poor outcomes for the individual with aphasia and their family. Long-term aphasia management is limited, with few people receiving sufficient services by 6-12 months postonset. We present a protocol for the development of coproduced aphasia service elements. We will use experience-based codesign (EBCD), an approach that enables service users and providers to collaboratively develop services and care pathways. Drawing on the experiences of people with aphasia, their families and clinicians we will establish priorities for the development of new services and later work together to codesign them. METHODS AND ANALYSIS: This research will be coproduced with people with aphasia (n=30-60), their families (n=30-60) and speech pathologists (n=30-60) in Queensland, Australia, using EBCD. A consumer advisory committee will provide oversight and advice throughout the research. In phase 1, we will use semistructured interviews and the nominal group technique to explore experiences and unmet needs in aphasia rehabilitation. Data will be analysed using thematic analysis and the resulting themes will be prioritised in multistakeholder focus groups. Outcomes of phase 1 will inform future research (phase 2) to codesign services. Financial costs and participant experiences of EBCD will be measured. ETHICS AND DISSEMINATION: Human Research Ethics Committee approval for phase 1 has been obtained (HREC/2020/QRBW/61368). Results will be reported in peer-reviewed journal articles, presented at relevant conferences and, following EBCD suggested best practice, fed back to participants and community members at a celebratory event at completion of the project. The inclusion of service users in all stages of research will facilitate an integrated approach to knowledge translation. A summary of research findings will be made available to participating sites.
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Afasia , Accidente Cerebrovascular , Técnicos Medios en Salud , Afasia/etiología , Enfermedad Crónica , Humanos , Ciencia Traslacional BiomédicaRESUMEN
BACKGROUND: Evidence for the potential prevention of dementia through lifestyle risk factor modification is growing and has prompted examination of implementation approaches. Understanding the general population's perspectives regarding dementia risk reduction is key to implementation. This may provide useful insights into more effective and efficient ways to help people change relevant beliefs, motivations and behaviour patterns. We conducted a systematic review and thematic synthesis of qualitative evidence to develop an integrated model of general population dementia risk reduction perspectives and the implications for intervention in research and implementation contexts. METHODS AND FINDINGS: We searched electronic databases, supplemented by lateral search techniques, to identify studies published since 1995 reporting qualitative dementia risk reduction perspectives of the non-expert general population who do not have dementia. Thematic synthesis, incorporating an expert panel discussion, was used to identify overarching themes and develop an integrated model to guide intervention to support individuals to adopt and maintain dementia risk reduction behaviour patterns. Quality of included studies and confidence in review findings were systematically appraised. We included 50 papers, reflecting the views of more than 4,500 individuals. Main themes were: 1) The need for effective education about a complex topic to prevent confusion and facilitate understanding and empowerment; 2) Personally relevant short- and long-term benefits of dementia risk reduction behaviour patterns can generate value and facilitate action; 3) Individuals benefit from trusted, reliable and sensitive support to convert understanding to personal commitment to relevant behaviour change; 4) Choice, control and relevant self-regulatory supports help individuals take-action and direct their own progress; 5) Collaborative and empowering social opportunities can facilitate and propagate dementia risk reduction behaviour change; 6) Individual behaviour patterns occur in social contexts that influence beliefs through heuristic processes and need to be understood. Findings indicate that, for intervention: 1) education is key, but both content and delivery need to be tailored; 2) complementary interventions to support self-regulation mechanisms and social processes will increase education effectiveness; 3) co-design principles should guide intervention design and delivery processes; 4) all interventions need to be supported by context-specific data. CONCLUSIONS: This systematic review and thematic synthesis provides a comprehensive, integrated model of the dementia risk reduction perspectives of the general population and intervention approaches to support behaviour change that can be applied in clinical trial and real-world implementation settings. Findings extend existing knowledge and may assist more effective intervention design and delivery.
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Demencia/patología , Conducta de Reducción del Riesgo , Bases de Datos Factuales , Empoderamiento , Humanos , Estilo de Vida , Apoyo SocialRESUMEN
BACKGROUND: Mental health policies outline the need for codesign of services and quality improvement in partnership with service users and staff (and sometimes carers), and yet, evidence of systematic implementation and the impacts on healthcare outcomes is limited. OBJECTIVE: The aim of this study was to test whether an adapted mental health experience codesign intervention to improve recovery-orientation of services led to greater psychosocial recovery outcomes for service users. DESIGN: A stepped wedge cluster randomized-controlled trial was conducted. SETTING AND PARTICIPANTS: Four Mental Health Community Support Services providers, 287 people living with severe mental illnesses, 61 carers and 120 staff were recruited across Victoria, Australia. MAIN OUTCOME MEASURES: The 24-item Revised Recovery Assessment Scale (RAS-R) measured individual psychosocial recovery. RESULTS: A total of 841 observations were completed with 287 service users. The intention-to-treat analysis found RAS-R scores to be similar between the intervention (mean = 84.7, SD= 15.6) and control (mean = 86.5, SD= 15.3) phases; the adjusted estimated difference in the mean RAS-R score was -1.70 (95% confidence interval: -3.81 to 0.40; p = .11). DISCUSSION: This first trial of an adapted mental health experience codesign intervention for psychosocial recovery outcomes found no difference between the intervention and control arms. CONCLUSIONS: More attention to the conditions that are required for eight essential mechanisms of change to support codesign processes and implementation is needed. PATIENT AND PUBLIC INVOLVEMENT: The State consumer (Victorian Mental Illness Awareness Council) and carer peak bodies (Tandem representing mental health carers) codeveloped the intervention. The adapted intervention was facilitated by coinvestigators with lived-experiences who were coauthors for the trial and process evaluation protocols, the engagement model and explanatory model of change for the trial.