A Seat Around the Table: Participatory Data Analysis With People Living With Dementia.

The involvement of "people with experience" in research has developed considerably in the last decade. However, involvement as co-analysts at the point of data analysis and synthesis has received very little attention-in particular, there is very little work that involves people living with dementia as co-analysts. In this qualitative secondary data analysis project, we (a) analyzed data through two theoretical lenses: Douglas's cultural theory of risk and Tronto's Ethic of Care, and (b) analyzed data in workshops with people living with dementia. The design involved cycles of presenting, interpreting, representing and reinterpreting the data, and findings between multiple stakeholders. We explore ways of involving people with experience as co-analysts and explore the role of reflexivity, multiple voicing, literary styling, and performance in participatory data analysis.

'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.

Transferring palliative care knowledge: evaluating the use of a telephone advice line.

Accessing specialist palliative expertise, particularly out of hours, is an important, but often problematic aspect of meeting directives to provide comprehensive around-the-clock care. A telephone advice line can be a successful route to transferring palliative care knowledge between specialists and generalists. In contrast to telephone expert systems, which demand standardization, this type of expert system emphasises the use of professional judgement. Based on a three-year evaluation, this article highlights that assessing and advising professionals about the use of a telephone as a communication mechanism demands specific communication skills and processes which need to be developed and nurtured. Another important feature to acknowledge is that the predominate aim of a telephone advice line may most appropriately be to transfer knowledge on a case-by-case basis to contribute to the resolution of a clinical need.

Roles, relationships, perils and values: development of a pathway between practice development and evaluation research.

BACKGROUND: Recent changes in primary care are encapsulated in a drive for enhanced quality, efficiency and effectiveness of care. A key element of the quality agenda is innovation and evaluation. This paper presents a case study of the processes involved in evaluating practice development in primary care, where commissioned research is concomitant to a service development that also integrated its own evaluation. There was an assumption that an 'outside' evaluation would be complementary to the concurrent 'inside' evaluation. However, there is a paucity of literature that overtly discusses or analyses the specific challenges. AIMS: To surface the tensions involved in combining internal and external evaluation, to allow development of a better understanding of the roles, relationships, perils and value of this approach to maintaining and enhancing quality in primary care. DESIGN: A case study presentation of reflexive analysis of inside and outside evaluator experiences of the evaluation of a practice development. RESULTS: We argue that despite recent methodological developments in practice, methodological, methodical, interpretive and political tensions persist between practice development and evaluation. The key problems fuelling the dissonance experienced by both practitioners and researchers appears to be around the co-existence of differing understandings of the evaluation scope and process among stakeholders. This has the potential to jeopardise the coherence of the concurrent external evaluation of a practice development initiative. A pathway enabling the explicit integration of the views of researchers, service developers, commissioners and ethics and research governance boards is presented. CONCLUSION: This article exposes often underlying and unrecognised areas of consonance and dissonance between the views of researchers and practice developers in a context of concurrent practical and academic evaluations. In some cases there is potential to progress from dissonance to consonance. In others, the differing worlds and agendas mean that dissonance will remain, but its existence needs to be acknowledged and worked with, rather than ignored.

The evaluation of an end-of-life integrated care pathway.

AIM: this evaluation set out to examine the needs of staff as they adopted an end-of-life integrated Care Pathway (ICP), and its impact on both service users and providers. METHOD: semi-structured interviews were conducted with palliative care specialists, other health care professionals and bereaved carers. RESULTS: the challenges encountered revolved around the multitude of settings, and professionals involved; around the diagnosing of dying; communication with patients and the provision of emotional or spiritual support. Ongoing challenges at the end of the evaluation were those of addressing spirituality and some of the established practices. However, there was general consensus that the ICP facilitated greater consistency of care, improved continuity, and ensured a proactive rather than a reactive approach to care. All these were recognised and appreciated by bereaved carers. CONCLUSION: end of life is now every health care professional's business and this may have the potential to raise the place of palliative care in general on the professional agenda.

Creative writing and dementia care: 'making it real'.

BACKGROUND: Health professionals continue to seek ways to promote positive communication and self-worth when supporting people living with dementia. The value of creative writing techniques as part of reflective practice in nursing and caring for older people with dementia needs further exploration. AIM: To introduce creative writing techniques to health professionals as part of dementia-related reflective practice. METHOD: A local experienced author facilitated creative writing workshops with nine preregistration nursing students (general and mental health), one family carer and five care professionals working with people with dementia. FINDINGS: The student nurses reported that the creative writing exercises felt more 'real' than the reflective practice models they had used in their academic and practical studies. Workshop participants also reported they had learnt some creative writing techniques to reduce work-related stress and anxiety. They also saw the impact of writing activities with people living with dementia, which can enable creativity and 'alleviate the common symptoms of depression and anxiety'. CONCLUSION: Creative writing techniques can support insightful, reflective dementia focused practice. IMPLICATIONS FOR PRACTICE: Creative writing, as a tool in reflective practice, may enable health professionals and family carers to become confident and creative partners in older people's care. The added value, time and investment needed to introduce creative writing need to be articulated and acknowledged from within supervision and staffing teams.

"We're all thrown in the same boat ": A qualitative analysis of peer support in dementia care.

Peer support is well established in fields such as the disability movement and mental health and is increasingly recognised as one way of enabling support by and for people with a diagnosis of dementia and their immediate carers. It was central to the implementation of the National Dementia Strategy (NDS) for England, when 40 demonstration sites were established. This mixed-methods study included in-depth qualitative interviews with people living with dementia (n = 101) and staff/stakeholders (n = 82) at 8 of the 40 sites. Data analysis was a five-stage process: coding framework developed (using 25 transcripts); further development of the framework (using a further 70 transcripts); development of emerging themes; modelling of themes and verification of models based on the entire data set. Peer support had positive emotional and social impact that was rooted in identification with others, a commonality of experience and reciprocity of support. There was also a contrast between the quality of peer support and support from professionals. This emphasises the significance of lived experience and promoting a strength-based approach to interpersonal support that is enabling and challenges a deficit approach to understanding dementia.

Seeing need and developing care: exploring knowledge for and from practice.

The use and creation of knowledge by practitioners is complex. There is a contemporary emphasis on the implementation of knowledge, or evidence, derived from outside the immediate practice environment. However, there is also an appreciation of the context-specific nature of practitioner knowledge that they use to inform patient care, and that is derived from their intimate contact with patients. This paper described one study that sought to analyse the impact of developments in practice on the wider professional and organisational community. Three case study sites were identified through a multidimensional sampling matrix, and interviews conducted with 41 practitioners of various organisational positions and professions. The primacy of context-specific, or proximal knowledge was highlighted, together with a manipulation of evidence and policy to fit understandings of local patient need.

Organisational space for partnership and sustainability: lessons from the implementation of the National Dementia Strategy for England.

National policy initiatives are faced with challenges in their partnership development and sustainability. The National Dementia Strategy for England recommended Dementia Adviser (DA) and Peer Support Network (PSN) services and 40 demonstration sites were established. In this paper, we report on the national evaluation of these demonstration sites, with specific reference to aspects of organisational development. The research used a mixed-methods design with three main strands: (i) activity and outcome monitoring; (ii) organisational surveys and collaborative discussion; (iii) in-depth case studies in eight of the 40 sites. This paper focuses primarily on three rounds of organisational surveys distributed to all 40 demonstration sites over a period of 21 months and interviews in the case studies. Data identify the significance of infrastructure within immediate services as well as the position of services within the external infrastructure of the wider health and social care landscape. Partnership - both internally and externally - was key to establishing and sustaining services that flourished. When working well, DAs and PSNs acted as a link between services and people with dementia at the same time as filling gaps in existing support, providing information, advice and interpersonal support that was tailored to individual needs and circumstances. In conclusion, to achieve the full potential and sustainability of services requires them to be in an organisational space that allows them to work in partnership and collaboration with other services, and that values their distinct knowledge of their communities.

Reframing risk management in dementia care through collaborative learning.

Risk management is a complex aspect of practice which can lead to an emphasis on maintaining physical safety, which impacts on the well-being of people with dementia. Education for practitioners in risk management is particularly challenging because of its conceptual nature and diverse perceptions of risk between and within professional groups. The practice development research reported here formed one part of a multisite study and contributed to developing a risk assessment and management framework for use by practitioners in partnership with people with dementia and their families. Practice development research uses learning theories in the process of the research, and in so doing its intent is to not only create new knowledge but to view the research process as also a process of learning for those involved. Twenty practitioners from varying professions participated in five Collaborative Learning Groups, each of at least 2 hours duration, which were held over a 7-month period. Data analysis highlighted contradictions in the care system and in the professional's intention to practice in a person-centred way. These were expressed through the themes of: Seeking Certainty; Making Judgements; Team Working; Managing Complexity; Gathering and Using Information.

The process of hospital discharge for medical patients: a model.

BACKGROUND: The 1990 NHS Community Care Act established a requirement for hospital discharge policies and procedures in the United Kingdom to be developed in collaboration with local government authorities in order to ensure supported discharge for those in need. AIMS: The aim of the study reported in this paper was to track decisions about hospital discharge in relation to outcomes for a sample of medical patients and their carers, identified as at risk of experiencing unsuccessful discharge processes. METHODS: Themed unstructured interviews were conducted in three different hospitals with 30 patients identified as at risk of unsuccessful discharge and their carers pre- and postdischarge. Hospital, community and social care staff involved in the care of the patient were also interviewed. FINDINGS: Patients and carers were constantly negotiating their social roles, seeking to juggle appropriate identities and limited resources to maintain their own and each others' dignity and quality of life. When the negotiation process was destabilized (for example, by exacerbation of chronic disease, withdrawal of some resource, or the experience of additional stressors - not necessarily health-related), then either or both parties sought a way out. In all the cases examined the result was admission to hospital - usually, but not always, mediated by community professionals. CONCLUSIONS: The effective discharge of patients from hospital needs to move from a functional focus on symptom management to a negotiation of quality of life that seeks to promote health for all parties involved.