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.
In spite of the rhetoric of partnership and collaboration in the Australian community sectors, economic values of competition have superseded social and co-operative values of self-help, empowerment, mutual benefit and solidarity. Reconfiguration of how co-operative practices can be understood in terms of social capital theory and civil society has been of limited success in countering this slide to economic rationalism. Ironically, many community practices, including co-operatives, explicitly emerged from moral protest against prevailing oppressive policies; that is co-operative and community development practices exist to embody an alternative set of values to oppressive features of dominant political and social institutions of the day.
This thesis identifies and analyses the features of co-operative practices which resist economic capture by the dominant ideology of neo-liberalism. It examines how co-operative practices can be analysed as forms of moral protest that offer and embody counterstories to master narratives that shape dominant institutions. Importantly, it is understood that not all forms of moral protest are socially transformative. While fostering social change, co-operatives must also resist ossification of their own principles and practices into homogenised traditions that exclude rather than include others.
To conduct this analysis, interviews were conducted with subjects engaged in co-operative activities. H. L. Nelson's (2001) narrative approach to ethics was used to identify how co-operatives can be positioned as counterstories to dominant narratives. T. Cooper's (1997) distinction between moral and ethical communities was then deployed to account for the features of co-operative practice that might lead to exclusion and non-co-operative identities. Finally, A.W. Frank's (1995) body-self type continuum was applied to co-operative practices to further evaluate the degree to which those who participated in these saw themselves contributing to practices of social transformation or defensive strategies of personal survival.
Abstract Background Physical inactivity significantly increases dementia risk (DR). For middle‐aged and older adults with co‐occurring cognitive concerns/impairment and mental health symptoms, DR increases further. Clinical trials indicate lower adherence to PA interventions for dementia risk reduction in such high risk‐group, and interventions tailored to support unique behaviour change needs are required. In EXCEL Phase 1 we developed a model to understand Physical Activity (PA) behavior change needs in this population and identify tailoring requirements to enhance engagement (see Curran et al. AAIC‐23, submitted). Here we report findings of our trial of a pragmatic online intervention to support middle‐aged and older adults with Subjective Cognitive Decline (SCD) or Mild Cognitive Impairment (MCI) and mild‐moderate symptoms of depression, anxiety or stress to adopt and maintain PA. Method An online individual 12‐week home‐based PA intervention. Participants aged 45‐80 years, experiencing both cognitive (SCD or MCI) and mild‐moderate mental health symptoms (measured by the Depression Anxiety and Stress Scale ‐ DASS‐21) were prescribed individually tailored PA programs combining aerobic and strength PA; plus balance training as indicated, with fortnightly online coaching from researchers. Acceptability, feasibility, safety, and effectiveness (including pre‐post change in PA and mental health scores) were measured. Result 55 participants were enrolled (46 females/9 males; mean age = 62.2 years). Retention was high (95%) and the intervention was well received; 98% finding it useful, 100% stating they would recommend to others. The intervention was safe, utilizing a system of email alerts/queries to the study medical team (44 alerts), PA team (35 queries/requests), individual exercise specialist (3 zoom sessions) and case conferences. Mental health improved across all DASS‐21 dimensions. Community Healthy Activities Model Program for Seniors (CHAMPS) scores improved post‐intervention, with higher frequency of all moderate/high intensity exercise (from 8.1 to 12.4 times/week), more strength training frequency (0.8 to 2.5 times/week) and longer time spent strength training (25 to 65 mins/week). Balance activity (older adults only) frequency increased from 0.5 ‐ 4 times/week. Conclusion This home‐based online intervention, using the Capability, Opportunity, and Motivation model of behavior change, successfully helped an at‐risk cohort adopt and maintain PA in line with Australian PA guidelines.
Identity and decision-making are interrelated concepts, but the relationship between them is complex particularly when an unwell person’s ability to make decisions is compromised. In this article we discuss how moral self-definition (Nelson, 2001;Walker, 1987) can be used within a Listening Guide (LG) analysis to extend analysis of the temporal relationship between identity and decisions. In this project, the LG was used to analyze interviews exploring older people’s understanding of medical decision-making when the unwell person’s capacity is diminished. The second step of the LG drew attention to the participants’ expression of decision-making voices and health-related identities, but the iterative and temporal relationship between identity and decisions was less well illuminated. Therefore, we applied the theoretical framework of moral self-definition within the third listening. The focus of this article is on how moral self-definition can be integrated as a theoretical framework within the contrapuntal listening to extend the LG analysis.
Codesign has the potential to transform health and other public services. To avoid unintentionally reinforcing existing inequities, better understanding is needed of how to facilitate involvement of vulnerable populations in acceptable, ethical and effective codesign.To explore citizens' involvement in codesigning public services for vulnerable groups, identify challenges and suggest improvements.A modified case study approach. Pattern matching was used to compare reported challenges with a priori theoretical propositions.A two-day international symposium involved 28 practitioners, academics and service users from seven countries to reflect on challenges and to codesign improved processes for involving vulnerable populations.Eight case studies working with vulnerable and disadvantaged populations in three countries.We identified five shared challenges to meaningful, sustained participation of vulnerable populations: engagement; power differentials; health concerns; funding; and other economic/social circumstances. In response, a focus on relationships and flexibility is essential. We encourage codesign projects to enact a set of principles or heuristics rather than following pre-specified steps. We identify a set of principles and tactics, relating to challenges outlined in our case studies, which may help in codesigning public services with vulnerable populations.Codesign facilitators must consider how meaningful engagement will be achieved and how power differentials will be managed when working with services for vulnerable populations. The need for flexibility and responsiveness to service user needs may challenge expectations about timelines and outcomes. User-centred evaluations of codesigned public services are needed.
Engagement is essential in trials research but is rarely embedded across all stages of the research continuum. The development, use, effectiveness and value of engagement in trials research is poorly researched and understood, and models of engagement are rarely informed by theory. This article describes an innovative methodological approach for the development and application of a relational model of engagement in a stepped wedge designed cluster randomised controlled trial (RCT), the CORE study. The purpose of the model is to embed engagement across the continuum of the trial which will test if an experience-based co-design intervention improves psychosocial recovery for people affected by severe mental illness. The model was developed in three stages and used a structured iterative approach. A context mapping assessment of trial sites was followed by a literature review on recruitment and retention of hard-to-reach groups in complex interventions and RCTs. Relevant theoretical and philosophical underpinnings were identified by an additional review of literature to inform model development and enactment of engagement activities. Policy, organisational and service user data combined with evidence from the literature on barriers to recruitment provided contextual information. Four perspectives support the theoretical framework of the relational model of engagement and this is organised around two facets: the relational and continuous. The relational facet is underpinned by relational ethical theories and participatory action research principles. The continuous facet is supported by systems thinking and translation theories. These combine to enact an ethics of engagement and evoke knowledge mobilisation to reach the higher order goals of the model. Engagement models are invaluable for trials research, but there are opportunities to advance their theoretical development and application, particularly within stepped wedge designed studies where there may be a significant waiting period between enrolment in a study and receipt of an intervention.
Many researchers within the social sciences, medicine, and humanities have examined the ways people talk and think about depression. In their research and published literature they have attempted to determine the theoretical frameworks and appropriate language for categorizing such concepts and understandings. Drawing from mental health and broader social science scholarship, in this article we examine three approaches to developing an inclusive understanding of depression experiences: explanatory models, exploratory maps, and illness narratives. Utilizing these terms in the analysis of a single dataset, we identified multiple conceptual terms with potential analytical validity. Furthermore, we argue that variable usage and meanings of these concepts among lay people might contribute to a shared understanding of depression between lay people and experts, and ultimately have positive consequences for clinical practice.
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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