Experiences of a communication-skills course for care partners of people living with dementia, empowered conversations: A qualitative framework analysis.

OBJECTIVES: Our aims were to examine whether an experiential course for care partners of people living with dementia, Empowered Conversations (EC), was acceptable to participants and to explore participants' perceptions of the impact of the course upon their communicative interactions. EC is based on an integrative model derived from psychological and linguistic theory and empirical evidence. EC is based on mentalisation theory, perceptual control theory and linguistic theory (The Communicative Impact Model). METHODS: Qualitative data were collected via 28 semistructured interviews. Framework analysis was used to analyse data. RESULTS: Three superordinate themes, 'improved communication', 'improved well-being' and 'support through others' were identified. Twenty-seven out of the 28 participants described feeling that they were able to better connect with the person living with dementia that they were supporting through attending EC. CONCLUSIONS: The findings indicated that EC was acceptable and beneficial to care partners. Care partners developed a range of strategies and understandings that enabled them to communicate better with the person they were supporting, enhanced well-being and relationships, as well as developing social networks. This is the first qualitative study to examine a psychosocial intervention for care partners of people living with dementia using a non-CBT framework and indicates that perceived control could influence how care partners respond to stress and difficulties.

'A lot of people think it's just a Mickey Mouse role': Role ambiguity among dementia support workers within secondary care and community hospital settings.

Purpose: Dementia support workers (DSWs) are employed to improve the hospital care for patients living with dementia. An evaluation sought to understand the perspectives and experiences of DSWs and related healthcare practitioners within one health board, to identify any role ambiguity and inform future role development.Design/methodology/approach: Framework analysis was used to synthesise data from semi-structured interviews and focus groups with dementia support workers, and a wider group of related healthcare practitioners.Findings: Thirteen semi-structured interviews were conducted with DSWs. Two focus groups were held with DSWs (n = 2 and 4) and two with associated healthcare practitioners (n = 3 and 5). Participants described inconsistencies in the understanding and delivery of the DSW role. Role ambiguity was identified as a key theme.Originality/value: This paper offers insight into challenges experienced by DSWs and addresses factors that could help improve and support the DSW role, and potentially the experience of other staff, and patients/people living with dementia. Overall, this evaluation highlights both the value of the DSW role in supporting the needs of patients/people living with dementia and the potential for person-centred activities to be used as therapeutic interventions.

'You're in a new game and you don't know the rules: Preparing carers to care'.

AIM: Being an informal carer for a person living with dementia can be a demanding role which can have detrimental effects on personal well-being and affect a person's ability to provide care for their loved one. This evaluation of support courses, offered by a leading UK charity dedicated to dementia family carers, highlights the impact of training to support the caring role. SETTING: Participants completed booklets at the training venue and subsequently online or by post. Interviews with participants took place by telephone. Participants: 84 participants completed booklets containing measures which generated quantitative data whilst 19 family carers participated in qualitative telephone interviews. DESIGN: A mixed methods approach was taken using booklets of validated measures to capture quantitative data, including capture of demographic information, together with semi-structured interviews conducted by telephone which were recorded, transcribed and subsequently analysed using thematic analysis. RESULTS: Overall, both the quantitative and qualitative analysis demonstrate that attending the carers support courses had a positive impact on carers with improvements being maintained over time. Outcomes indicated that carers generally remained in a better physical, mental and emotional situation than that experienced before the course. CONCLUSION: Being prepared for the trajectory of the caring role when providing care for a person living with dementia can help informal carers to be better prepared, better supported and better informed. Evidence gained from this evaluation demonstrates the impact of the courses and adds to the current weak evidence base relating to dementia courses aimed at preparing carers to care.

Sustainability of locally driven centres for those affected by dementia: a protocol for the get real with meeting centres realist evaluation.

INTRODUCTION: Improving support for people with early to moderate dementia to live at home in their communities is a global public health goal. Community adult social care is not robust in many parts of the UK, however, with the pandemic increasing pressure on services for this population. Community-led interventions can play a key role in supporting people postdiagnosis, helping delay decline, but many interventions struggle to sustain beyond 1-2 years. Meeting Centres (MCs) are one such intervention, which many UK community groups find attractive and achievable. However, it is not understood how these communities can ensure they are putting in place strategies that will help them sustain in the longer term, beyond start-up phase. METHODS AND ANALYSIS: This realist evaluation aims to understand the factors affecting sustainability of MCs in rural areas and learn lessons from MCs that have sustained beyond 3 years. Data will be collected using mixed methods: interviews and group discussions with stakeholders involved at every level in three case study locations in England and Wales, analysed with Soft Systems modelling; a Discrete Choice Experiment exploring what people across the UK value and are willing to pay for MCs, analysed with regression modelling. All data will be synthesised using a Realist logic of analysis to build a theoretical model of how, why, for whom, in what contexts and to what extent MCs can be successfully implemented for the long term. ETHICS AND DISSEMINATION: As participants may lack capacity for informed consent, favourable ethical opinion was received from a Health Research Authority research ethics committee. Resulting recommendations will be of interest to stakeholders including those commissioning, planning, running, supporting or attending MCs, as well as policy-makers and healthcare professionals. Knowledge will be shared with emerging MCs to help accelerate scale up of this intervention.

A feasibility study of the impact of a communication-skills course, 'Empowered Conversations', for care partners of people living with dementia.

OBJECTIVES: To examine the feasibility, acceptability and impact of an experiential course for family care partners of people living with dementia, Empowered Conversations (EC). This study aimed to assess the impact of participation in an EC course on care partner stress levels, communication and mentalization (a form of relational-based empathy). METHOD: This study uses an uncontrolled pre-post-follow-up design. Follow-up was at 4-months after the initial EC session where baseline data were collected. One hundred and fifty-nine care partners were recruited. EC is a training course that has been designed to improve care partner communication, well-being and relationships. It is based on an integrative framework that targets the specific psychological, relationship and communication needs of carers. This framework informs targeted strategies and interactive exercises that facilitate carers to consider the goals and emotions of those they are caring for, alongside their own goals and emotions, and to use this to maximize good communication. RESULTS: Stress was significantly reduced across the three time points. Communication significantly improved across time. There were no significant changes in reflective functioning (mentalization). DISCUSSION: This study provides preliminary evidence that a communication-skills training course for care partners of people living with dementia is an acceptable and feasible intervention and has an impact both post-intervention and at follow-up. These findings require validation in a rigorous, randomized study.

Comfortably numb? Experiences of people with stroke and lower limb sensation deficits: impact and solutions.

PURPOSE: To explore personal experiences of loss of foot sensation following stroke in order to inform the focus of clinical assessments and development of a vibrotactile insole. METHODS: Qualitative design with an interpretive phenomenological approach to data collection and analysis. Eight community dwelling adults with stroke (>6 months) and sensory impairment in the feet participated. Data was collected via conversational style interviews which were transcribed and analyzed using a thematic framework. Themes were verified with co-researchers and a lay advisory group. RESULTS: Data formed four themes: Sensory deficits are prevalent and constant, but individual and variable; Sensory deficits have a direct impact on balance, gait, mobility and falls; Sensory deficits have consequences for peoples' lives; Footwear is the link between function, the environment and identity. They embraced the concept of discrete vibrotactile insoles, their potential benefits and demonstrated a willingness to try it. CONCLUSIONS: Sensory deficit contributes to effects upon physical function, mobility and activity. Clinical outcome measures need to capture the emotional, psychological and social impacts of sensory deficit. Participants demonstrated a resilience and resourcefulness through adaption in daily living and self-management of footwear. The participants focus on footwear provides the opportunity to develop discrete and non-burdensome vibrotactile insoles for this patient group.IMPLICATIONS FOR REHABILITATIONSensory deficits are wide ranging and varied and are not distinct from motor deficits though contribute to the overall effect on physical function, mobility and activity.The physical effects impact on participants' lives emotionally, psychologically and socially. Measurement of outcomes need to capture specific activities that are valued by patients.The participants have revealed resilience and resourcefulness to create a "new normal" for their lives through adaption and self-management with a focus being on footwear as a solution.The participants have revealed the need for insole interventions to be discreet and non-burdensome, welcoming insole technology and contributing to the design and features of such insoles.

Communication Empowerment Framework: An integrative framework to support effective communication and interaction between carers and people living with dementia.

OBJECTIVES: To demonstrate the power of integrating three theoretical perspectives (Mentalization Theory, Perceptual Control Theory and the Communicative Impact model), which jointly illuminate the communication challenges and opportunities faced by family carers of people with dementia. To point the way to how this framework informs the design and delivery of carer communication and interaction training. METHOD: Conceptual synthesis based on a narrative review of relevant literature, supported by examples of family carers. RESULTS: We use the conceptual models to show how the capacity to mentalize ("holding mind in mind") offers a greater sense of control over internal and external conflicts, with the result that they can be deescalated in pursuit of mutual goals. CONCLUSIONS: The integrative conceptual framework presented here highlights specific psychological and relational mechanisms that can be targeted through carer training to enhance communication with a person living with dementia.

Understanding the needs and experiences of people with young onset dementia: a qualitative study.

AIM: Despite an estimated 40 000 people diagnosed with young onset dementia (YOD) in the UK, there is a general lack of awareness of the condition when compared with late onset dementia. The aim of this study was to explore the experiences and needs of people living with YOD (younger than 65 years) and gain an understanding of the issues that impact on them. SETTING: Participants' homes, support group premises or university rooms. PARTICIPANTS: 14 people with a diagnosis of YOD from a northern UK city. DESIGN: Semistructured, in-depth interviews were audio recorded, transcribed and analysed cross-sectionally following principles of interpretative phenomenological analysis. RESULTS: Four superordinate themes are reported on 'process of diagnosis', 'the impact of living YOD', 'needs of people with YOD' and 'living well with YOD'. Nine subordinate themes captured participant experiences of developing cognitive difficulties, after being diagnosed with YOD, and subsequently living with the condition. Key issues that emerging included a lack of general awareness of YOD; how this can delay help seeking; commonalities in prediagnosis trajectories; retrospective understanding of prediagnosis symptom patterns; the difficulties of obtaining a firm diagnosis; the importance of face-to-face support and difficulties associated with daily living. Participants also described the emotional and psychological impact of the condition and the importance of formal and informal support networks. CONCLUSIONS: People who have a diagnosis of YOD regard themselves as distinct from older people with dementia. Despite similar symptoms, the context in which they experience the condition creates a range of distinct psychosocial concerns not commonly well addressed by health and social care services. As awareness of YOD continues to grow, the development (or adaptation) of services that take into account the idiosyncratic needs of people with YOD should be addressed.

Improving access to mental health care in an Orthodox Jewish community: a critical reflection upon the accommodation of otherness.

BACKGROUND: The English National Health Service (NHS) has significantly extended the supply of evidence based psychological interventions in primary care for people experiencing common mental health problems. Yet despite the extra resources, the accessibility of services for 'under-served' ethnic and religious minority groups, is considerably short of the levels of access that may be necessary to offset the health inequalities created by their different exposure to services, resulting in negative health outcomes. This paper offers a critical reflection upon an initiative that sought to improve access to an NHS funded primary care mental health service to one 'under-served' population, an Orthodox Jewish community in the North West of England. METHODS: A combination of qualitative and quantitative data were drawn upon including naturally occurring data, observational notes, e-mail correspondence, routinely collected demographic data and clinical outcomes measures, as well as written feedback and recorded discussions with 12 key informants. RESULTS: Improvements in access to mental health care for some people from the Orthodox Jewish community were achieved through the collaborative efforts of a distributed leadership team. The members of this leadership team were a self-selecting group of stakeholders which had a combination of local knowledge, cultural understanding, power to negotiate on behalf of their respective constituencies and expertise in mental health care. Through a process of dialogic engagement the team was able to work with the community to develop a bespoke service that accommodated its wish to maintain a distinct sense of cultural otherness. CONCLUSIONS: This critical reflection illustrates how dialogic engagement can further the mechanisms of candidacy, concordance and recursivity that are associated with improvements in access to care in under-served sections of the population, whilst simultaneously recognising the limits of constructive dialogue. Dialogue can change the dynamic of community engagement. However, the full alignment of the goals of differing constituencies may not always be possible, due the complex interaction between the multiple positions and understandings of stakeholders that are involved and the need to respect the other'-s' autonomy.

Comprehensive geriatric assessment on an acute medical unit: a qualitative study of older people's and informal carer's perspectives of the care and treatment received.

OBJECTIVE: This qualitative study was imbedded in a randomized controlled trial evaluating the addition of geriatricians to usual care to enable the comprehensive geriatric assessment process with older patients on acute medical units. The qualitative study explored the perspectives of intervention participants on their care and treatment. DESIGN: A constructivist study incorporating semi-structured interviews that were conducted in patients' homes within six weeks of discharge from the acute medical unit. These interviews were recorded, transcribed, and analysed using thematic analysis. SETTING: An acute medical unit in the United Kingdom. PARTICIPANTS: Older patients ( n = 18) and their informal carers ( n = 6) discharged directly home from an acute medical unit, who had been in the intervention group of the randomized controlled trial. RESULTS: Three core themes were constructed: (1) perceived lack of treatment on the acute medical unit; (2) nebulous grasp of the role of the geriatrician; and (3) on-going health and activities of daily living needs postdischarge. These needs impacted upon the informal carers, who either took over, or helped the patients to complete their activities of daily living. Despite the help received with activities of daily living, a lot of the patients voiced a desire to complete these activities themselves. CONCLUSIONS: The participants perceived they were just monitored and observed on the acute medical unit, rather than receiving active treatment, and spoke of on-going unresolved health and activity of daily living needs following discharge, despite receiving the additional intervention of a geriatrician.

Enhancing public involvement in assistive technology design research.

PURPOSE: To appraise the application of accepted good practice guidance on public involvement in assistive technology research and to identify its impact on the research team, the public, device and trial design. METHODS: Critical reflection and within-project evaluation were undertaken in a case study of the development of a functional electrical stimulation device. Individual and group interviews were undertaken with lay members of a 10 strong study user advisory group and also research team members. RESULTS: Public involvement was seen positively by research team members, who reported a positive impact on device and study designs. The public identified positive impact on confidence, skills, self-esteem, enjoyment, contribution to improving the care of others and opportunities for further involvement in research. A negative impact concerned the challenge of engaging the public in dissemination after the study end. CONCLUSIONS: The public were able to impact significantly on the design of an assistive technology device which was made more fit for purpose. Research team attitudes to public involvement were more positive after having witnessed its potential first hand. Within-project evaluation underpins this case study which presents a much needed detailed account of public involvement in assistive technology design research to add to the existing weak evidence base. IMPLICATIONS FOR REHABILITATION: The evidence base for impact of public involvement in rehabilitation technology design is in need of development. Public involvement in co-design of rehabilitation devices can lead to technologies that are fit for purpose. Rehabilitation researchers need to consider the merits of active public involvement in research.

Feasibility study of a take-home array-based functional electrical stimulation system with automated setup for current functional electrical stimulation users with foot-drop.

OBJECTIVE: To investigate the feasibility of unsupervised community use of an array-based automated setup functional electrical stimulator for current foot-drop functional electrical stimulation (FES) users. DESIGN: Feasibility study. SETTING: Gait laboratory and community use. PARTICIPANTS: Participants (N=7) with diagnosis of unilateral foot-drop of central neurologic origin (>6mo) who were regular users of a foot-drop FES system (>3mo). INTERVENTION: Array-based automated setup FES system for foot-drop (ShefStim). MAIN OUTCOME MEASURES: Logged usage, logged automated setup times for the array-based automated setup FES system and diary recording of problems experienced, all collected in the community environment. Walking speed, ankle angles at initial contact, foot clearance during swing, and the Quebec User Evaluation of Satisfaction with Assistive Technology version 2.0 (QUEST version 2.0) questionnaire, all collected in the gait laboratory. RESULTS: All participants were able to use the array-based automated setup FES system. Total setup time took longer than participants' own FES systems, and automated setup time was longer than in a previous study of a similar system. Some problems were experienced, but overall, participants were as satisfied with this system as their own FES system. The increase in walking speed (N=7) relative to no stimulation was comparable between both systems, and appropriate ankle angles at initial contact (N=7) and foot clearance during swing (n=5) were greater with the array-based automated setup FES system. CONCLUSIONS: This study demonstrates that an array-based automated setup FES system for foot-drop can be successfully used unsupervised. Despite setup's taking longer and some problems, users are satisfied with the system and it would appear as effective, if not better, at addressing the foot-drop impairment. Further product development of this unique system, followed by a larger-scale and longer-term study, is required before firm conclusions about its efficacy can be reached.