Torn between dual roles: the experiences of nurse-family members when a loved one is hospitalised in a critical condition

This is the peer reviewed version of the following article: [Giles, T. M. and Williamson, V. (2015), Torn between dual roles: the experiences of nurse-family members when a loved one is hospitalised in a critical condition. Journal of Clinical Nursing, 24: 3095–3106.], which has been published in final form at DOI:10.1111/jocn.12900. This article may be used for non-commercial purposes in accordance with Wiley Terms and Conditions for Self-Archiving (http://olabout.wiley.com/WileyCDA/Section/id-820227.html#terms). Author version made available in accordance with the publisher's policy - an embargo period of 12 months from publication applies.Aims and objectives. To understand and interpret the experiences of Nurse-Family Members when a family member or loved one is hospitalised in a critical condition. Background. Having a family member hospitalised with a critical illness is a traumatic stressor, often with long term sequelae. Providing holistic care for family members who are also nurses makes the provision of care more complex because of their professional expertise; yet few studies have explored this issue. Design. In this descriptive study, qualitative data were collected using a questionnaire and analysed using Van Manen’s (1990) six step approach. Methods. Twenty Nurse-Family Members completed an online questionnaire in June 2013. Qualitative findings from 19 participants were included in the analysis. The phenomenological analysis approach described by van Manen (1990) was used to describe and interpret Nurse-Family Member experiences. Results. Nurse-Family Members experience significant dual role conflicts between their personal and professional personas due to their specialised knowledge, need for watchfulness, and competing expectations. Our findings describe how dual role conflicts developed and were managed, and reveal the resultant emotional toll and psychological distress as Nurse-Family Members struggled to resolve these conflicts. Conclusions. Nurse-Family Members require a different type of care than general public family members, yet their unique needs are often unmet, leading to increased anxiety and distress that could potentially be minimised. An increased awareness and emphasis on the Nurse-Family Member experience can ensure health-care professionals are better placed to provide appropriate and targeted care to minimise distressing dual role conflicts. Relevance to clinical practice. There is a need for targeted and specialised communication appropriate to each nurse-family members’ needs and level of understanding, and to clarify expectations in order to ensure nurse-family members’ professional knowledge and skills are recognised and respected without being exploited

Stakeholder Perspectives of an Approach to Healthcare Leadership Development Through Use of a Multidimensional Leadership Development Conceptual Model

Leadership is often the driver used to transform healthcare services. Healthcare leadership development is often situated around conceptual frameworks or leadership development models. The aim of the study reported here was to evaluate multistakeholder perspectives on leadership development when applying a Multidimensional Leadership Development Conceptual Model to post-graduate healthcare leadership programmes at a university in England. This exploratory qualitative study of healthcare leadership development comprised face-to-face interviews. Six interviews were undertaken with academics from a post-graduate leadership programme team, a family carer and service-user of health care services, and current United Kingdom students and former United Kingdom and international students who had undertaken the leadership development programme. Transcripts were thematically analysed. Three themes emerged: Expectations of the contemporary healthcare leader; Experiences of the Multidimensional Leadership Development Conceptual Model on leadership development; and Improvements to the model. We conclude that framing post-graduate leadership programmes around a conceptual model can aid identification of the key components required for effective leadership development. Evidence-informed recommendations are provided which seek to optimise healthcare leadership development using a leadership development conceptual model which (1) represents the values and beliefs of all stakeholders involved; (2) is reviewed annually to critically explore the internal and external evidence base for leadership development; gain stakeholder consensus of expectations of the healthcare leader; and provide the reality check to ensure a ?fit for purpose? programme; and (3) is constructively aligned to leadership programme curricula with sufficient flexibility to tailor an effective teaching and learning platform for preparing the individual leader, noting unique circumstances and contexts

Dementia-friendly Design of Television News Broadcasts

Purpose - To understand factors that affect viewing of television news programmes by people living with dementia; to identify dementia-friendly design principles for television news programmes and factors for personalising object-based media broadcast. Design - Public involvement comprising two discussion groups with people with dementia and family carers informed the study design and provided supplementary secondary data. Primary data collection comprised a focus group interview with people with dementia (n=4) and family carers (n=4). Past viewing experiences and perceived barriers and facilitators to viewing television were explored. Participants commented on an array of video clips comprising varying segments of fictional news programmes, plus control versions of each segment. Findings - Four themes were identified: Content (general comments, context, type of media and pace); Presenter (body language, clothing and accent); Background (location and studio appearance); Technical aspects (graphics, sound, colours, camera, transitions, general issues). Research limitations - Limitations included modest sample size Practical implications - Measures ensured research involvement and participation was made accessible to people living with dementia. Social implications - Participants benefited from sharing views with peers and expressed enhanced wellbeing from knowing their participation could lead to improved television viewing, an important social occupation, for people with dementia in the future. Originality/value - This study is the first to be published which focuses on dementia-friendly television news programmes. Paper type - Research stud

A systematic review and meta-analysis of cognitive processing deficits associated with body dysmorphic disorder

© 2018 Elsevier. This manuscript version is made available under the CC-BY-NC-ND 4.0 license: http://creativecommons.org/licenses/by-nc-nd/4.0/ This author accepted manuscript is made available following 24 month embargo from date of publication (May 2018) in accordance with the publisher’s archiving policyThis systematic review and meta-analysis examined the evidence supporting the association between body dysmorphic disorder (BDD) symptomology and four types of cognitive processing abnormalities: local processing, selective attention, interpretive biases, and memory deficits. Twenty-three studies met inclusion requirements that examined differences in performance on cognitive tasks between BDD and control groups across the four categories. Multilevel modelling was used to calculate an overall effect size for each cognitive category. BDD and control groups differed significantly on measures of selective attention (g=.60, 95% CI=.26: .93), interpretive biases (g=.30, 95% CI=. 07: .54), and memory deficits (g=.56, 95% CI=.26: .87). Differences between the BDD and control groups on measures of local processing did not reach significance. These findings support the hypothesis that people with BDD may selectively attend to perceived threats or to disorder-related stimuli, misinterpret ambiguous stimuli as threatening, overvalue the importance of attractiveness, and have inaccurate coding and recall for facial or bodily stimuli. Recommendations for future research of these specific cognitive deficits in BDD include introducing the use of Modified Dot Probe Paradigms and new treatment targets that can be used as adjuncts to current treatment modalities

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

Communication Empowerment Framework: an Integrative Framework to Support Effective Communication and Interaction Between Carers and People Living with Dementia

ObjectivesTo 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.MethodConceptual synthesis based on a narrative review of relevant literature, supported by examples of family carers.ResultsWe 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.ConclusionsThe 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

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

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

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 REHABILITATION Sensory 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