Social connectedness and dementia prevention: Pilot of the APPLE-Tree video-call intervention during the Covid-19 pandemic

BACKGROUND AND OBJECTIVES: The Covid-19 pandemic reduced access to social activities and routine health care that are central to dementia prevention. We developed a group-based, video-call, cognitive well-being intervention; and investigated its acceptability and feasibility; exploring through participants’ accounts how the intervention was experienced and used in the pandemic context. RESEARCH DESIGN AND METHOD: We recruited adults aged 60+ years with memory concerns (without dementia). Participants completed baseline assessments and qualitative interviews/focus groups before and after the 10-week intervention. Qualitative interview data and facilitator notes were integrated in a thematic analysis. RESULTS: 12/17 participants approached completed baseline assessments, attended 100/120 (83.3%) intervention sessions and met 140/170 (82.4%) of goals set. Most had not used video calling before. In the thematic analysis, our overarching theme was social connectedness. Three sub-themes were as follows: Retaining independence and social connectedness: social connectedness could not be at the expense of independence; Adapting social connectedness in the pandemic: participants strived to compensate for previous social connectedness as the pandemic reduced support networks; Managing social connections within and through the intervention: although there were tensions, for example, between sharing of achievements feeling supportive and competitive, participants engaged with various lifestyle changes; social connections supported group attendance and implementation of lifestyle changes. DISCUSSION AND IMPLICATIONS: Our intervention was acceptable and feasible to deliver by group video-call. We argue that dementia prevention is both an individual and societal concern. For more vulnerable populations, messages that lifestyle change can help memory should be communicated alongside supportive, relational approaches to enabling lifestyle changes

Social connectedness and dementia prevention: Pilot of the APPLE-Tree video-call intervention during the Covid-19 pandemic.

BACKGROUND AND OBJECTIVES: The Covid-19 pandemic reduced access to social activities and routine health care that are central to dementia prevention. We developed a group-based, video-call, cognitive well-being intervention; and investigated its acceptability and feasibility; exploring through participants' accounts how the intervention was experienced and used in the pandemic context. RESEARCH DESIGN AND METHOD: We recruited adults aged 60+ years with memory concerns (without dementia). Participants completed baseline assessments and qualitative interviews/focus groups before and after the 10-week intervention. Qualitative interview data and facilitator notes were integrated in a thematic analysis. RESULTS: 12/17 participants approached completed baseline assessments, attended 100/120 (83.3%) intervention sessions and met 140/170 (82.4%) of goals set. Most had not used video calling before. In the thematic analysis, our overarching theme was social connectedness. Three sub-themes were as follows: Retaining independence and social connectedness: social connectedness could not be at the expense of independence; Adapting social connectedness in the pandemic: participants strived to compensate for previous social connectedness as the pandemic reduced support networks; Managing social connections within and through the intervention: although there were tensions, for example, between sharing of achievements feeling supportive and competitive, participants engaged with various lifestyle changes; social connections supported group attendance and implementation of lifestyle changes. DISCUSSION AND IMPLICATIONS: Our intervention was acceptable and feasible to deliver by group video-call. We argue that dementia prevention is both an individual and societal concern. For more vulnerable populations, messages that lifestyle change can help memory should be communicated alongside supportive, relational approaches to enabling lifestyle changes

Coproduction of a theory-based digital resource for unpaid carers (the care companion) : mixed-methods study

Background: Family and other unpaid carers are crucial to supporting the growing population of older people that are living outside residential care with frailty and comorbidities. The burden associated with caring affects carers’ well-being, thus limiting the sustainability of such care. There is a need for accessible, flexible, and responsive interventions that promote carers’ coping and resilience, and hence support maintenance of the health, well-being, and independence of the cared-for person. Objective: This study aimed to coproduce a digital program for carers to promote resilience and coping through supporting effective use of information and other Web-based resources. Its overlapping stages comprised the following: understanding the ways in which Web-based interventions may address challenges faced by carers, identifying target behaviors for the intervention, identifying intervention components, and developing the intervention prototype. Methods: The study was informed by person-based theories of coproduction and involved substantial patient and public involvement. It drew on the Behavior Change Wheel framework to support a systematic focus on behavioral issues relevant to caring. It comprised scoping literature reviews, interviews, and focus groups with carers and organizational stakeholders, and an agile, lean approach to information technology development. Qualitative data were analyzed using a thematic approach. Results: Four behavioral challenges were identified: burden of care, lack of knowledge, self-efficacy, and lack of time. Local health and social care services for carers were only being accessed by a minority of carers. Carers appreciated the potential value of Web-based resources but described difficulty identifying reliable information at times of need. Key aspects of behavior change relevant to addressing these challenges were education (increasing knowledge and understanding), enablement (increasing means and reducing barriers for undertaking caring roles), and persuasion (changing beliefs and encouraging action toward active use of the intervention). In collaboration with carers, this was used to define requirements for the program. A resources library was created to link to websites, Web-based guidance, videos, and other material that addressed condition-specific and generic information. Each resource was classified according to a taxonomy itemizing over 30 different subcategories of need under the headings Care Needs (of the cared-for person), General Information and Advice, and Sustaining the Carer. In addition, features such as a journal and mood monitor were incorporated to address other enablement challenges. The need for proactive, personalized prompts emerged; the program regularly prompts the carer to revisit and update their profile, which, together with their previous use of the intervention, drives notifications about resources and actions that may be of value. Conclusions: The person-based approach allowed an in-depth understanding of the biopsychosocial context of caring to inform the production of an engaging, relevant, applicable, and feasible Web-based intervention. User acceptance and feasibility testing is currently underway

Healthy ageing in a deprived northern UK city: A co-creation study

With ageing comes an increased risk of poor health and social isolation, particularly in poorer populations. Older people are under-represented in research and as a result interventions may not take account of their context or barriers to participation. In co-creative work future service users work with professionals on an equal basis to design, develop and produce a service or intervention. Our objectives were to undertake a co-creation study with older people living in a northern city in the United Kingdom, ii)explore maintenance of health and wellbeing in older age)explore the application of co-creation with an older community population and) evaluate the process and inform future work. The study was conducted during2016bya project team of ten lay community dwelling older people and four university researchers. Findings demonstrate that state of mind and of health were key to wellbeing in older age. Feeling safe, comfortable and pain free were important along with being able to adapt to change, have choice and a sense of personal freedom. Social connectedness was seen as the keystone to supporting healthy behaviours. Rather than developing new interventions, there was a perceived need to connect people with existing resources and provide a human “bridge” to address barriers to accessing these. In conclusion, the co-creation process proved productive, even when undertaken on a small scale. The scope of the project needs to be realistic, to use diverse methods of recruitment and skilled facilitators, and to prepare well in terms of accessibility, simple systems and appropriate information provision

Exploring the experiences of loneliness in adults with mental health problems: a participatory qualitative interview study

Background Loneliness is associated with many mental health conditions, as both a potential causal and an exacerbating factor. Richer evidence about how people with mental health problems experience loneliness, and about what makes it more or less severe, is needed to underpin research on strategies to help address loneliness. Methods Our aim was to explore experiences of loneliness, as well as what helps address it, among a diverse sample of adults living with mental health problems in the UK. We recruited purposively via online networks and community organisations, with most interviews conducted during the COVID-19 pandemic. Qualitative semi-structured interviews were conducted with 59 consenting participants face-to-face, by video call or telephone. Researchers with relevant lived experience were involved at all stages, including design, data collection, analysis and writing up of results. Findings Analysis led to identification of four overarching themes: 1. What the word “lonely” meant to participants, 2. Connections between loneliness and mental health, 3. Contributory factors to continuing loneliness, 4. Ways of reducing loneliness. Central aspects of loneliness were lack of meaningful connections with others and lack of a sense of belonging to valued groups and communities. Some drivers of loneliness, such as losses and transitions, were universal, but specific links were also made between living with mental health problems and being lonely. These included direct effects of mental health symptoms, the need to withdraw to cope with mental health problems, and impacts of stigma and poverty. Conclusions The multiplicity of contributors to loneliness that we identified, and of potential strategies for reducing it, suggest that a variety of approaches are relevant to reducing loneliness among people with mental health problems, including peer support and supported self-help, psychological and social interventions, and strategies to facilitate change at community and societal levels. The views and experiences of adults living with mental health problems are a rich source for understanding why loneliness is frequent in this context and what may address it. Co-produced approaches to developing and testing approaches to loneliness interventions can draw on this experiential knowledge

Coproducing universal primary education in a context of social exclusion : households, community organisations and state administration in a district of Karnataka, India

This thesis focuses on the challenge of achieving the goal of universal primary education in a context that is characterised by wide-ranging disparities in the education prospects of different social groups. An overall history of state failure to provide for universal education, and the patterns of exclusion and deprivation that constrain the participation of large sections of Indian rural populations provide the background to recent policy efforts to address the problem of low education participation. The thesis argues that concerted effort is required on the part of households and of the state if future efforts to achieve Universal Primary Education (UPE) are to be more successful than the past. It analyses new approaches which recognise the importance of challenging inequality in access to education, the role of community organisations in the process of stimulating participation in education, and the need for the reform of the administrative apparatus of the state into a more responsive, flexible institution. The coproduction framework facilitates the analysis of the means through which different institutional actors can co-operate in the production of goods and services. Recognition of the importance of social norms and networks that aid co-operation between different actors, and of the importance of effective governance on the part of the state in constructing positive relations between different actors are the strengths of the framework. However, the framework also has limitations. The thesis principally identifies the following: the assumption of shared orientations between users about the value of the good or service concerned, and the implicit assumption of homogeneity among service users and lack of attention paid to inequality and exclusion. Further, the thesis argues that there is insufficient empirical attention to the informal relations within which processes of implementation are embedded. Evidence of limitations is provided through application to a rural district, where the interface between state, community organisations and households in relation to primary education services is studied. Centrally, the thesis argues that the analysis of norms that perpetuate the reproduction of patterns of education exclusion is essential to identify the types of production processes and relationships that are necessary for inclusive and universal education

Understanding the inclusion and participation of adults from Black African Diaspora Communities (BAFDC) in health and care research in the UK:a realist review protocol

Introduction: People from Black African Diaspora Communities (BAFDC) experience poorer health outcomes, have many long-term conditions and are persistently under-represented in health and care research. There is limited focus on programmes, or interventions that support inclusion and participation of people from BAFDC in research. Through coproduction, this realist review seeks to provide a programme theory explaining what context and mechanisms may be required, to produce outcomes that facilitate inclusion and participation for people from BAFDC in health and care research, in the UK.Methods and analysis: A group of people from BAFDC with lived and professional experience, representing all levels of the health and care research system, will coproduce a realist review with a team of African-Caribbean, white British and white British of Polish origin health and care researchers. They will follow Pawson’s five steps: (1) shaping the scope of the review; (2) searching for evidence; (3) document selection and appraisal; (4) data extraction and (5) data synthesis. The coproduction group will help to map the current landscape, identifying key issues that may inhibit or facilitate inclusion. Data will be extracted, analysed and synthesised following realist logic analysis, identifying and explaining how context and mechanisms are conceptualised in the literature and the types of contextual factors that exist and impact on inclusion and participation. Findings will be reported in accordance with Realist and Meta-narrative Evidence Synthesis Evolving Standards .Ethics and dissemination: The coproduction group will agree an ethical approach considering accountability, responsibility and power dynamics, by establishing a terms of reference, taking a reflexive approach and coproducing an ethical framework. Findings will be disseminated to BAFDC and the research community through arts-based methods, peer-reviewed publications and conference presentations, agreeing a coproduced strategy for dissemination. Ethical review is not required.PROSPERO registration number: CRD42024517124