Conceptualising dementia crisis and preferences for resolution: A public perspective

Background: Crisis intervention services for people with dementia in the United Kingdom are poorly defined with no standardized model of working. This may be due to the lack of a clear conceptualization of dementia crisis, resulting in variation in national service delivery. Methods: This study employed a novel public engagement questionnaire data collection technique with 57 participants to gain an updated perspective on the concept of health-related crisis from the point of view of the public. Results: Analysis revealed crisis as a transformational moment that may arrive unexpectedly but could also be the culmination of a sequence of events. Crisis resolution requires external and expert help, and associated feelings of panic and despair can engender the task of resolution by oneself insurmountable. Conclusions: Participants had clear expectations of crisis intervention services, with initial practical and emotional support to reduce risks, and a person-centered approach with family involvement

Making adult safeguarding personal

Purpose To ascertain what efforts Adult Safeguarding Leads (ASLs), generic advocates, and Independent Mental Capacity Advocates (IMCAs) are making to involve service users in decisions about protective measures, and to investigate whether the Adult Safeguarding Service is delivering outcomes, which are valued by its users. Design/methodology/approach semi-structured interviews with a sample of key stakeholders. Findings Findings: ASLs are making efforts to involve service users in the complex and demanding process of safeguarding. These efforts, however, are shaped by their understandings of the difference between ‘residential’ and ‘community’ settings. Research limitations/implications The study is based in a single county council, albeit in a large county, and involves a limited number of service users Practical implications Clarification is needed of what it may mean to adopt a person-centred approach to adult safeguarding, and the responsibilities of ASLs when individuals with capacity to make decisions about this aspect of their lives are unwilling to engage with the safeguarding process. Originality/value The findings improve our understanding of how ASLs understand their responsibilities towards the users of their services and endeavour to involve them in the adult safeguarding process. Based on this understanding, those with responsibility for managing Adult Safeguarding services should be better able to support improvements in professional practice.SJ’s contribution was funded by The Health Foundation. Support for MR, AJH and ICHC was provided initially by the NIHR CLAHRC for Cambridgeshire & Peterborough), and subsequently by The Health Foundation (MR) and the NIHR CLAHRC East of England (AJH and ICHC). The views expressed are those of the authors and not necessarily those of the NHS, the NIHR or the Department of Health.This is the accepted manuscript. The final version is available at http://www.emeraldinsight.com/doi/abs/10.1108/JAP-11-2014-0031

Interprofessional interactions influence nurses\u27 adoption of handover improvement

Aim: The purpose of this study was to explore clinician experiences of adopting quality improvement tools to standardise interprofessional (anaesthetist-to-nurse) handover communication when patients arrive in the post-anaesthetic care unit (PACU). Method: In this study, factors that impacted PACU nurses\u27 adoption of the quality improvement tools were explored using pre- and postimplementation, semi-structured focus group interviews. Interview data was analysed using the PARiHS1 (context, evidence and facilitation) framework as a deductive analysis tool. Results: PACU nurses recognised that PACU handover from anaesthetists to PACU nurses was suboptimal and described the tools as useful for their practice. However, PACU nurses frequently cited fear of anaesthetists\u27 reactions as reasons not to insist on the use of the handover improvement tools. PACU nurses at Hospital 2 identified lacking "authority" (Hospital 2 FG 2) in the OR as hindering their willingness to use the tools against these behaviours. In comparison, visible support from leadership at Hospital 1 was described as encouraging nurses to be "assertive" (Hospital 1 FG 2) and take charge of their patients\u27 care. Conclusion: PACU nurses perceived the handover tools were useful and helped them identify gaps in handover practice; however, PACU nurses described difficult relationships as hindering communication effectiveness and discouraging their adoption of the tools. However, strong leadership and organisational support of change emerged as essential to mitigate the effects of these difficult relationships

Is there a broader role for independent mental capacity advocates in critical care? An exploratory study.

BACKGROUND: This research explores the current and potential future role of independent mental capacity advocates (IMCAs) in critical care. The Mental Capacity Act (MCA) of 2005 introduced IMCAs as advocates for patients without anyone to represent their best interests, but research suggests that this role is not well understood or implemented. No existing research explores the role of IMCAs in critical care or their potential use when families are judged 'appropriate to act' on the patient's behalf. It is suggested that families may not be best placed to advocate for their sick family member when they themselves are in a state of shock. AIM: To investigate existing levels of knowledge and awareness of the MCA and understanding of the role of IMCAs in critical care as a prelude to considering whether the role of IMCAs might usefully be extended. The concept of 'IMCA clinics' is introduced and explored. DESIGN AND METHODS: A small-scale qualitative study using thematic analysis of 15 interviews across two NHS sites and a survey of IMCA services were undertaken. RESULTS: Some knowledge of the MCA was evident across both study sites, but training on MCA remains unsatisfactory, with confusion about the role of IMCAs and when they should become involved. Overall, participants felt that the broader involvement of IMCAs on a regular basis within critical care could be useful. CONCLUSIONS: There was evidence of good practice when instructing IMCAs, but further work needs to be conducted to ensure that critical care staff are informed about the referral process. It was clear that expanding the role of an advocate warrants further investigation. RELEVANCE TO CLINICAL PRACTICE: Further training on the role of IMCAs within critical care is required, and good practice examples should be shared with other units to improve referral rates to the IMCA service and ensure that vulnerable patients are properly represented

Tensions between policy and practice: A qualitative analysis of decisions regarding compulsory admission to psychiatric hospital.

The use of detention for psychiatric treatment is widespread and sometimes necessary. International human rights law requires a legal framework to safeguard the rights to liberty and personal integrity by preventing arbitrary detention. However, research suggests that extra-legal factors may influence decisions to detain. This article presents observational and interview data to describe how decisions to detain are made in practice in one jurisdiction (England and Wales) where a tension between policy and practice has been described. The analysis shows that practitioners mould the law into 'practical criteria' that appear to form a set of operational criteria for identifying cases to which the principle of soft paternalism may be applied. Most practitioners also appear willing, albeit often reluctantly, to depart from their usual reliance on the principle of soft paternalism and authorise detention of people with the capacity to refuse treatment, in order to prevent serious harm. We propose a potential resolution for the tension between policy and practice: two separate legal frameworks to authorise detention, one with a suitable test of capacity, used to enact soft paternalism, and the other to provide legal justification for detention for psychiatric treatment of the small number of people who retain decision-making capacity but nonetheless choose to place others at risk by refusing treatment. This separation of detention powers into two systems, according to the principle that justifies the use of detention would be intellectually coherent, consistent with human rights instruments and, being consistent with the apparent moral sentiments of practitioners, less prone to idiosyncratic interpretations in practice.This study was conducted by EF as a PhD student in the Cambridge Intellectual and Developmental Disabilities Research Group, Department of Psychiatry, University of Cambridge, funded by a Wellcome Trust PhD Studentship in Biomedical Ethics. AJH and ICHC supervised the work, and MR contributed social science expertise to the working group. Cambridgeshire and Peterborough NHS Foundation Trust sponsored the project as a service evaluation study and we thank the participations for their co-operation. The findings, and suggestions for practice, have been fed back to the Trust through internal clinical governance processes. During the preparation of this paper, ICHC and AJH were supported by the NIHR's Collaboration for Leadership in Applied Health Research and Care (CLAHRC) East of England at Cambridgeshire and Peterborough NHS Foundation Trust. The views expressed are those of the authors and not necessarily those of the NHS, the NIHR or the Department of Health.This is the author accepted manuscript. It is currently under an indefinite embargo pending publication by Elsevier

The incidence of healthcare use, ill health and mortality in adults with intellectual disabilities and mealtime support needs

This is the final published version. It first appeared at http://onlinelibrary.wiley.com/doi/10.1111/jir.12167/full.Background\ud Adults with intellectual disabilities (ID) experience a wide range of eating, drinking and/or swallowing (EDS) problems, for which they receive diverse mealtime support interventions. Previous research has estimated that dysphagia (difficulty swallowing) affects 8% of all adults with ID and that 15% require some form of mealtime support. People with ID (whether they require mealtime support or not) also experience a greater burden of ill-health and die younger than their peers in the general population with no ID.\ud \ud Methods\ud Using an exploratory, population-based cohort study design, we set out to explore health-related outcomes in adults with ID who receive mealtime support for any eating, drinking or swallowing problem, by establishing the annual incidence of healthcare use, EDS-related ill-health, and all-cause mortality. This study was conducted in two counties in the East of England.\ud \ud Results\ud In 2009, 142 adults with mild to profound ID and a need for any type of mealtime support were recruited for a baseline survey. At follow-up one year later, 127 individuals were alive; eight had died; and seven could not be contacted. Almost all participants had one or more GP consultations each year (85-95%) and, in the first year, 20% reportedly had one or more emergency hospitalisations. Although their annual number of GP visits was broadly comparable to that of the general population, one-fifth of this population?s primary healthcare use was directly attributable to EDS-related ill-health. Respiratory infections were the most common cause of morbidity, and the immediate cause of all eight deaths, while concerns about nutrition and dehydration were surprisingly minor. Our participants had a high annual incidence of death (5%) and, with a standardised mortality ratio of 267, their observed mortality was more than twice that expected in the general population of adults with ID (not selected because of mealtime support for EDS problems).\ud \ud Conclusions\ud All Annual Health Checks now offered to adults with ID should include questions about respiratory infections and EDS functioning, in order to focus attention on EDS problems in this population. This has the potential to reduce life-threatening illness

An exploration of patients’ experience of nurses’ use of point-of-care information technology in acute care

The rapid introduction of technology into acute healthcare settings, specifically the presence of point-of-care health information technology at patients’ bedsides, is expected to impact patients’ healthcare experience by altering nurse-patient interactions. This research was a multi-method naturalistic pilot study designed to explore patients’ perception of their interactions with nurses using bedside point-of-care health information technology in acute care. Data were collected using observation, interviews and surveys. Twenty-four participants were purposefully recruited from medical and surgical wards, to capture variability in their self-reported confidence with information technology; 29% were not confident, 38% were somewhat confident and 33% were completely confident with information technology. Participants’ mean age was 68.6 years (SD 11.1) and 63% were male. Qualitative observation, interview and survey data showed some nurses directly involved patients and explained or demonstrated how the point-of-care health information technology was being used to complement and enhance their care; while others used the point-of-care health information technology as an electronic documentation tool without engaging their patients. Patients’ experiences of point-of-care health information technology differed with their self-reported confidence with information technology; those with complete information technology confidence were better at recognising the potential and opportunities for point-of-care health information technology to support self-directed care than those with less confidence using information technology. Some participants reported that the use of point-of-care health information technology impeded interpersonal communication with nurses. Participants recognised the benefits of point-of-care health information technology to support clinical practice but generally desired greater engagement with the nurses when they used the system

Improving the Health and Well-Being of Adults With Conditions of a Genetic Origin: Views from Professionals, Syndrome Support Groups and Parents.

BACKGROUND: Advances in medical genetics herald the possibility that health and social care services could be more responsive to the needs arising from a person's genotype. This development may be particularly important for those men and women whose learning disability (known internationally as intellectual disability) is linked to a neurodevelopmental condition of genetic origin. METHOD: This possibility is tested through interviews with samples of (i) professional 'opinion former' with nationally recognised clinical and/or academic interests in learning disabilities and genetics; (ii) representatives of syndrome organisations prompting the interests of families where someone has a neurodevelopmental condition, and parent-members of these same organisations. RESULTS: The reporting and discussion of the interview data considers the possibility that notwithstanding the successes of the social model of disability, the health and wellbeing of people whose learning disability is associated with a neurodevelopmental condition could be better served by a more medicalised approach to their interests. CONCLUSION: While a more medicalised approach to this populations' disabilities would appear to be beneficial, so long as it is focused on interventions to improve their lives rather than catalogues their deficiencies.This work was supported by a grant from the Medical Research Council under its Life-Long Health and Wellbeing initiative, project reference no. G0900035. Additional support for the preparation of this article came from the Health Foundation. The research was also supported by the National Institute for Health Research (NIHR) Collaboration for Leadership in Applied Health Research and Care (CLAHRC) East of England at Cambridgeshire and Peterborough NHS Foundation Trust.This is the final version of the article. It first appeared from Wiley via https://doi.org/10.1111/jar.1229

MyStay – Development of nurse-facilitated condition-specific multimedia resources to facilitate patient participation in postoperative care

Improved postoperative outcomes and the global drive toward the provision of patient-centred care underpins efforts to enhance the nature and capacity of patient participation in acute postoperative hospital care. In this paper, we describe the design, framework and processes used to develop a modular, procedure-specific, digital health intervention platform aimed at improving the patient experience and patient participation in care following surgery. The intervention, a multimedia application MyStay, uses bedside delivery of audio-visual and text-based information to engage postoperative patients to better participate in their care. MyStay modules are developed using an iterative, multi-method approach intended to balance procedure-specific best evidence, current clinical practice, and patient preferences. Development involves six key elements: (1) Empathise with target users, (2) Ground in evidence and behavioural theory, (3) Specify target behaviours, (4) Integration of health service standards and clinical care pathways/guidelines, (5) Build and refine the multimedia product and, (6) Pilot implementation to assess potential effectiveness and usability. To-date, we have developed four procedure-specific MyStay modules and an additional three are under development. Initial patient usage data for the Total Knee Replacement (TKR) and cardiac surgery applications indicated that users accessed a wide range of text-based and audio-visual information, most frequently recovery goals and exercises following TKR, and postoperative recovery information for the intensive care unit following cardiac surgery. As previous research that tested MyStay indicated its efficacy in optimising clinical postoperative outcomes, this framework may be useful in the development of other digital health innovations. Further research is required to assess patient and clinician engagement and determine whether MyStay is associated with improved patient outcomes across varied clinical contexts. Experience Framework This article is associated with the Innovation & Technology lens of The Beryl Institute Experience Framework (https://www.theberylinstitute.org/ExperienceFramework). Access other PXJ articles related to this lens. Access other resources related to this len