Participatory Research Into Inclusive Practice: Improving Services for People With Long Term Neurological Conditions.

People with long-term conditions are intensive users of health services as well as being long term users of social care and community services. In the UK, the Department of Health has suggested that the development of a more inclusive approach to services could furnish benefits to people with long-term conditions and financial savings for service providers. Researchers with a varied set of expertise and experience (users of neuro-rehabilitation services, staff working in services, people working with third sector agencies and university academics) adopted a participatory research approach to work together to explore what inclusion might look and feel like for people who are long term users of health services. The element of critique and mutual challenge, developed within the research process, disturbed current presentations of inclusion and inclusive practice. It revealed that the more usually expected components of inclusion (trust, respect and shared responsibility) whilst necessary for inclusive practice, are not necessarily sufficient. Inclusion is revealed as a complex and challenging process that requires the active construction of a critical communicative space for dialectical and democratic learning for service development

Do parents and carers experiencing violent and challenging behaviour from their children fit with a safeguarding model of support? Messages from a Facebook study

Purpose This paper reports research findings on the experiences of parents/carers of children with special education needs and disabilities who present violent and challenging behaviour. More specifically, the purpose of this paper is to explore how parents/carers report how their support needs are met by social care services. Design/methodology/approach The research is an empirical study which considers the challenging side of parenting children with additional needs. Data were gathered through a national online social media focus group and thematically analysed to identify emerging themes from an overlooked community. The study applied a participatory approach, with researchers and participants collaborating in designing and producing the research. Findings Participants reported a multitude of adversities and they experience difficulties in accessing support from professionals. The parents and carers expressed a continued desire to care for their children, often during much adversity and in receipt of little recognition or support from external agencies. An emerging theme was that they are often not assessed in their own right by agencies who focus on safeguarding. Research limitations/implications In this online participatory study, participants were self-selecting and the research relied on self-report during online discussions. Originality/value This study is original in applying an innovative research methodology using online focus groups with an under researched community. This online focus group generated real time data and offered participants the opportunity to share information in their own environments. The themes emerging from this research have implications for policy and practice for an under reported adult community who experience increasing vulnerabilities. The study sought to explore how parents of SEND children displaying VCB experienced their world. Through an online, focus group. The research is an empirical study, which considers the challenging side of parenting children with additional needs. This is a phenomenon, which has largely gone unnoticed in research. Phenomenology is concerned with the exploration of experiences from the first person perspective, in order to uncover and unearth previously unnoticed issues. The study applied a participatory approach, with researchers and participants collaborating in designing and producing the research. Data from the study were thematically analysed

Relational care and co-operative endeavour:Reshaping dementia care through participatory secondary data analysis

Dementia is emerging from the shadows of societal exclusion and stigma. The engagement within society for people who are marginalised is coconstructed through the everyday practices that take place between them and those around them. However, this is inherently political, positioning people as active and activist in the relationship of their lives with their communities. The research aimed to interrogate an existing qualitative dataset in partnership with people living with dementia to inform the development of a way of working with people with dementia that is empowering. In this qualitative secondary data analysis project, we (1) analysed data through two theoretical lenses: Douglas’ cultural theory of risk and Tronto’s Ethic of Care, and (2) co-analysed the data together with people living with dementia during 14 workshops. The design involved cycles of presenting, interpreting, representing and reinterpreting the data and findings between multiple stakeholders. We identified a granular understanding of the way relationships change for people with dementia and how subtle factors and nuanced behaviour contribute to social exclusion, or support social inclusion. The results support relational care through the co-operative endeavour (of co-operative communication, cooperative action and co-operative care) in promoting the inclusion of people living with dementia

Enacting mentorship which empowers: a realist exploration of relationships between trained mentor activity and doctors

Doctors' wellbeing is overlooked, although stress and burnout is high. Evidence suggests links between mentoring and health and wellbeing, but little is known. This mixed methods, Realistic Evaluation investigated relationships between mentoring by ‘trained’ mentors, and doctors experiences of health and well-being. Data included a questionnaire (n=57) and multiple interviews (n=43) with 13 mentors over 20 months. Findings identified many threats to doctors’ health and wellbeing. However, an ‘empowerer’ model of mentorship enacted via formal and informal interactions enabled constructive responses which go beyond individuals to groups, and appear to increase social capital, individual and group agency, resourcefulness and resilience

‘I feel more part of the world’: Participatory action research to develop post-diagnostic dementia support

Many people living with dementia are ‘on the margins’, not accessing services and support, despite policy and care advancements. The COVID-19 pandemic exacerbated this, with the closure of face-to-face support during lockdowns in the UK and globally. The aim of the ‘Beyond the Margins’ project was to develop, implement, and evaluate a face-face programme of support with, by and for people with direct experience of dementia who are on the margins of existing services and support. In March 2020 the project was interrupted by the outbreak of the COVID-19 pandemic and it changed to an online format. The three-phase participatory action research project included 40 people living with dementia, 26 care partners and 31 health and social care practitioners. A seven-week online personal development programme called Getting On with Life (GO) was developed, delivered, and evaluated. This paper focuses on the participatory approaches used to develop and implement the GO programme, and the resulting aspects of its approach to facilitation and content. Key features include the GO Programme’s principles of providing a safe and a respectful space, and the programme’s values of: Everyone who comes already knows things, can learn things and can teach things; Doing things ‘with’ each other, rather than ‘for’ or ‘to’ each other; Personalised goals—led by the needs of participants rather than an imposed agenda. A key finding was the importance of developing post-diagnostic programmes as a ‘sandwich’, providing a safe space for learning that is preceded by understanding pathways to access the programme and followed by explicit consideration of the next steps in increasing social engagement

Whose Research Is This? - Participatory Secondary Data Analysis with People Living with Dementia

Drawing on our approach and findings from a secondary interrogation of an existing qualitative dataset, this work set out to challenge assumptions of practice through using participatory methods. Our approach brought two key aspects together: applying the theories of Douglas’s Cultural Theory of Risk and Tronto’s Ethic of Care, and a collaboration with people living with dementia as co-analysts in the co-production (interpretation) of knowledge and representing the experiences within the qualitative dataset. The research generated an understanding of relational care and the subtle ways in which relationships change for someone with dementia. In this case, we describe the processes we followed and reflect on the demands and challenges, experienced as researchers, in focusing on reflexivity, multiple voicing, literary styling, and performance. In our description of how we had to relinquish any sense of a concluding authoritative voice, we highlight the innovation in this participatory secondary data analysis and encourage others to engage with this dialogue

‘I just want to get on with my life’:A mixed methods study of active management of quality of life in living with dementia

The active management of the experience of living with dementia appears to improve quality of life despite the lack of disease modification (Alzheimer’s Association 2015). However, research to date has been largely of modest scale and explanatory factors for improvements under-conceptualised. Thus, although promulgated through national strategies, the evidence base is relatively weak. This paper reports on a nation-wide study of the influence of the National Dementia Strategy for England (Department of Health 2009) in relation to Dementia Adviser and Peer Support Network services in 40 demonstration sites. The research aimed to identify ways in which the services contribute to the wellbeing and resilience of people with dementia and care partners. A mixed methods research design collected data through: activity and outcome monitoring; organisational surveys; in-depth case studies, including qualitative interviews with people with dementia (n=47) and care partners (n=54), wellbeing and quality of life measures, and interviews with staff and other stakeholders (n=82). Three themes are explored: Addressing individual and community needs, Promoting independence, control and choice, Getting a life back. Services promoted independence, control and choice and consequently enabled people to re-narrate their lives as purposeful within their communities. Ways in which these are achieved resemble the public health model of lay health advisor and this research adds to the imperative to approach dementia as a key public health concern