'You can't start a car when there's no petrol left': a qualitative study of patient, family and clinician perspectives on implantable cardioverter defibrillator deactivation.

OBJECTIVE: To explore the attitudes towards implantable cardioverter defibrillator (ICD) deactivation and initiation of deactivation discussions among patients, relatives and clinicians. DESIGN: A multiphase qualitative study consisting of in situ hospital ICD clinic observations, and semistructured interviews of clinicians, patients and relatives. Data were analysed using a constant comparative approach. SETTING: One tertiary and two district general hospitals in England. PARTICIPANTS: We completed 38 observations of hospital consultations prior to ICD implantation, and 80 interviews with patients, family members and clinicians between 2013 and 2015. Patients were recruited from preimplantation to postdeactivation. Clinicians included cardiologists, cardiac physiologists, heart failure nurses and palliative care professionals. RESULTS: Four key themes were identified from the data: the current status of deactivation discussions; patients' perceptions of deactivation; who should take responsibility for deactivation discussions and decisions; and timing of deactivation discussions. We found that although patients and doctors recognised the importance of advance care planning, including ICD deactivation at an early stage in the patient journey, this was often not reflected in practice. The most appropriate clinician to take the lead was thought to be dependent on the context, but could include any appropriately trained member of the healthcare team. It was suggested that deactivation should be raised preimplantation and regularly reviewed. Identification of trigger points postimplantation for deactivation discussions may help ensure that these are timely and inappropriate shocks are avoided. CONCLUSIONS: There is a need for early, ongoing and evolving discussion between ICD recipients and clinicians regarding the eventual need for ICD deactivation. The most appropriate clinician to instigate deactivation discussions is likely to vary between patients and models of care. Reminders at key trigger points, and routine discussion of deactivation at implantation and during advance care planning could prevent distressing experiences for both the patient and their family at the end of life.

Information sharing challenges in end-of-life care: a qualitative study of patient, family and professional perspectives on the potential of an Electronic Palliative Care Co-ordination System.

OBJECTIVES: To explore current challenges in interdisciplinary management of end-of-life care in the community and the potential of an Electronic Palliative Care Co-ordination System (EPaCCS) to facilitate the delivery of care that meets patient preferences. DESIGN: Qualitative study using interviews and focus groups. SETTING: Health and Social Care Services in the North of England. PARTICIPANTS: 71 participants, 62 health and social care professionals, 9 patients and family members. RESULTS: Four key themes were identified: information sharing challenges; information sharing systems; perceived benefits of an EPaCCS and barriers to use and requirements for an EPaCCS. Challenges in sharing information were a source of frustration for health and social care professionals as well as patients, and were suggested to result in inappropriate hospital admissions. Current systems were perceived by participants to not work well-paper advance care planning (ACP) documentation was often unavailable or inaccessible, meaning it could not be used to inform decision-making at the point of care. Participants acknowledged the benefits of an EPaCCS to facilitate information sharing; however, they also raised concerns about confidentiality, and availability of the increased time and resources required to access and maintain such a system. CONCLUSIONS: EPaCCS offer a potential solution to information sharing challenges in end-of-life care. However, our findings suggest that there are issues in the initiation and documentation of end-of-life discussions that must be addressed through investment in training in order to ensure that there is sufficient information regarding ACP to populate the system. There is a need for further qualitative research evaluating use of an EPaCCS, which explores benefits and challenges, uptake and reasons for disparities in use to better understand the potential utility and implications of such systems.

A critical exploration of professional jurisdictions and role boundaries in inter-professional end-of-life care in the community.

This article critically examines how professional boundaries and hierarchies influence how end-of-life care is managed and negotiated between health and social care professionals. Our findings suggest there is uncertainty and lack of clarity amongst health and social care professionals regarding whose responsibility it is to engage, and document, the wishes of patients who are dying, which can lead to ambiguity in treatment decisions. We go on to explore the potential role of a new electronic system, designed to facilitate information sharing across professional boundaries, in shaping and bridging professional boundaries in the delivery of end-of-life care. We highlight potential negative impacts that may arise when health and social care groups are permitted varying levels of access to the system, and how this may be seen to reflect the value placed on their role in end-of-life care.

Connecting at Local Level: Exploring Opportunities for Future Design of Technology to Support Social Connections in Age-Friendly Communities.

Social connectedness in later life is an important dimension of an age-friendly community, with associated implications for individual health and wellbeing. In contrast with prior efforts focusing on connections at a distance or online communities where the digital technology is the interface, we explore the design opportunities and role of technology for connectedness within a geographically local community context. We present findings from interviews with 22 older adults and a linked ideation workshop. Our analysis identified shared concerns and negative perceptions around local relationships, connections and characteristics of the geographical area. However, local connectedness through technology was largely absent from day-to-day life and even perceived as contributing to disconnection. By uncovering how older adults use and perceive technology in their social lives and combining these findings with their ideas for improving local connections, we highlight the need for thoughtful consideration of the role of technology in optimising social connections within communities. Our research highlights a need for design work to understand the specifics of the local context and reduce emphasis on technology as the interface between people. We introduce an amended definition-'underpinned by a commitment to respect and social inclusion, an age-friendly community is engaged in a strategic and ongoing process to facilitate active ageing by optimising the community's physical, social and digital environments and its supporting infrastructure'-to conceptualise our approach. We conclude by suggesting areas for future work in developing digitally connected age-friendly communities.

Paramedic information needs in end-of-life care: a qualitative interview study exploring access to a shared electronic record as a potential solution.

BACKGROUND: Limited access to, understanding of, and trust in paper-based patient information is a key factor influencing paramedic decisions to transfer patients nearing end-of-life to hospital. Practical solutions to this problem are rarely examined in research. This paper explores the extent to which access to, and quality of, patient information affects the care paramedics provide to patients nearing end-of-life, and their views on a shared electronic record as a means of accessing up-to-date patient information. METHOD: Semi-structured interviews with paramedics (n = 10) based in the north of England, drawn from a group of health and social care professionals (n = 61) participating in a study exploring data recording and sharing practices in end-of-life care. Data were analysed using thematic analysis. RESULTS: Two key themes were identified regarding paramedic views of patient information: 1) access to information on patients nearing end-of-life, and 2) views on the proposed EPaCCS. Paramedics reported they are typically unable to access up-to-date patient information, particularly advance care planning documents, and consequently often feel they have little option but to actively treat and transport patients to hospital - a decision not always appropriate for, or desired by, the patient. While paramedics acknowledged a shared electronic record (such as EPaCCs) could support them to provide community-based care where desired and appropriate, numerous practical and technical issues must be overcome to ensure the successful implementation of such a record. CONCLUSIONS: Access to up-to-date patient information is a barrier to paramedics delivering appropriate end-of-life care. Current approaches to information recording are often inconsistent, inaccurate, and inaccessible to paramedics. Whilst a shared electronic record may provide paramedics with greater and timelier access to patient information, meaning they are better able to facilitate community-based care, this is only one of a series of improvements required to enable this to become routine practice.

GPs' experiences and perceptions of early detection of liver disease: a qualitative study in primary care.

BACKGROUND: The incidence of liver disease is increasing in the UK and primary care is a key setting where improvement in the detection and management of liver disease is required. Little is known about GPs' understanding and confidence in detecting liver disease. AIM: To explore GPs' experiences of liver disease with a focus on early detection and interpretation of liver function tests (LFTs). DESIGN AND SETTING: A qualitative study employing semi-structured interviews of a purposive sample of GPs from five UK primary care study sites. METHOD: Telephone and face-to-face interviews of GPs were undertaken. Data were analysed thematically, using a constant comparative approach. RESULTS: From a total of 25 GP interviews (N = 25), four themes were identified from the data: test-requesting behaviour, confidence and challenges in diagnosing disease, access to specialist tests, and guidance and education. Participants' descriptions of how they request and interpret LFTs varied widely. Concern over missing diagnoses was a common reason for requesting blood tests; patients with mildly abnormal LFTs and those at risk of non-alcoholic fatty liver disease (NAFLD) were a particular cause of concern. GPs saw themselves as generalists, with a reluctance to take on specialist investigations. Guidelines promoted confidence for some clinicians, but others felt that liver disease was too complex to be amenable to simple instructions. Most felt that they did not have access to relevant, focused education on liver disease. CONCLUSION: Liver disease is not perceived as a priority in primary care. If GPs are to take on a greater role in identification and management of liver disease, support is needed to promote awareness, knowledge, and confidence.

'We're like a gang, we stick together': experiences of ventricular assist device communities.

BACKGROUND: Ventricular assist devices (VADs) are a relatively new development in the management of advanced heart failure. In the UK, VAD recipients comprise a unique group of less than 200 patients. This is the first paper to explore the experience of VAD communities, the extent to which communities are developed around the device, and how these influence the experience of living with the VAD. METHODS: Qualitative interviews were conducted with 20 VAD recipients (implanted as a bridge to transplantation), 11 interviews also included the VAD recipients' partners. Interpretive phenomenology was employed as the theoretical basis guiding the analysis of the interviews. RESULTS: Four key themes emerged from the data: the existence of VAD communities; experiential knowledge and understanding; social comparisons; and the impacts of deaths within the VAD community. Many of the interviewees valued the VAD communities and the relationships they had formed with fellow recipients. The beneficial impacts of the VAD communities included offering recently implanted patients a realistic view of what to expect from life with a VAD; this could aid them in accepting and adapting to the changes imparted by the device. However, negative impacts of the VAD communities were also reported, in particular following deaths within the group, which were a source of distress for many of the interviewees. CONCLUSIONS: In general, the VAD communities appeared to be a beneficial source of support for the majority of interviewees. Consideration should be given to how these communities could be supported by clinicians.

'Being' a ventricular assist device recipient: A liminal existence.

Ventricular assist devices (VADs) are playing an increasing role in the management of heart failure. VADs are mechanical circulatory devices that support or replace the function of a failing heart. Currently, VADs are only offered in theUnited Kingdom (UK) to patients waiting for a heart transplant; however, the use of these devices is likely to increase in the near future. Presently, there is a dearth of literature exploring the day-to-day realities of living with a VAD, which will become increasingly important as the role of VADs is increased. This paper adopts an interpretive phenomenological approach to uncover the experience of 'Being' a VAD recipient. Semi-structured interviews were conducted with 20 VAD recipients. The overarching theme is that life with a VAD is a liminal existence. This comprised four subthemes: the first examines how the VAD imposes limitations on recipients' lives that can precipitate a loss of identity; the second focuses on temporal disruptions, recipients' sense of time changes from authentic to inauthentic; the third explores how the VAD itself is liminal, it is positioned as temporary rather than as the 'answer' to the condition; and finally, we discuss VAD recipients' projections to the future and the possibility of an end to the experience of liminality.

How can primary care enhance end-of-life care for liver disease? Qualitative study of general practitioners' perceptions and experiences.

BACKGROUND: Liver disease is the third most common cause of premature death in the UK. The symptoms of terminal liver disease are often difficult to treat, but very few patients see a palliative care specialist and a high proportion die in hospital. Primary care has been identified as a setting where knowledge and awareness of liver disease is poor. Little is known about general practitioners' (GPs) perceptions of their role in managing end-stage liver disease. OBJECTIVE: To explore GPs' experiences and perceptions of how primary care can enhance end-of-life care for patients with liver disease. DESIGN: Qualitative interview study, thematic analysis. PARTICIPANTS: Purposive sample of 25 GPs from five regions of England. RESULTS: GPs expressed a desire to be more closely involved in end-of-life care for patients with liver disease but identified a number of factors that constrained their ability to contribute. These fell into three main areas; those relating directly to the condition, (symptom management and the need to combine a palliative care approach with ongoing medical interventions); issues arising from patients' social circumstances (stigma, social isolation and the social consequences of liver disease) and deficiencies in the organisation and delivery of services. Collaborative working with support from specialist hospital clinicians was regarded as essential, with GPs acknowledging their lack of experience and expertise in this area. CONCLUSIONS: End-of-life care for patients with liver disease merits attention from both primary and secondary care services. Development of care pathways and equitable access to symptom relief should be a priority.

Barriers to access to education for young people with epilepsy in Northern Tanzania: A qualitative interview and focus group study involving teachers, parents and young people with epilepsy.

OBJECTIVE: Educational outcomes for young people with epilepsy (YPE) in Hai District, Tanzania, are poor, as is commonly observed elsewhere in Sub-Saharan Africa. The reasons for this finding are not well understood, though stigma arising from supernatural concepts of epilepsy is frequently cited as a barrier to YPE accessing education. In this study, we aimed to explore the reasons why many YPE in Tanzania experience poor access to education, and elicit ways in which education could be improved for YPE according to teachers, parents and YPE. METHODS: Ten focus group discussions with teachers were organized in Hai schools between March and May 2016. The themes arising from these discussions were identified, coded, analyzed and tested in semi-structured interviews with 19 YPE and 17 parents identified from a prevalent cohort of YPE identified in 2009. RESULTS: Behavioral problems and learning difficulties were cited as the main barriers to education for YPE. Other barriers included parental stigmatization, teachers' inadequate seizure management, and limited access to specialist schools. Teachers perceived that parents and YPE believe in spiritual etiology and traditional management for epilepsy. However, the majority of teachers, parents, and YPE cited biological etiology and management options, although understanding of epilepsy etiology and management could be improved amongst all groups. SIGNIFICANCE: A multidimensional approach is needed to improve educational access, and hence outcomes, for YPE. Widespread community education is needed to improve knowledge of epilepsy etiology and management. Teachers require seizure management training, and parents need help to recognize YPE's right to education. Educational needs assessments would help to identify YPE requiring specialist schooling, and access to this could be improved. These interventions will likely reduce stigma, ensure appropriate academic and pastoral care at school, and thus enable YPE to attend, and succeed, in education.

Reliance on habits at the expense of goal-directed control following dopamine precursor depletion.

RATIONALE: Dopamine is well known to play an important role in learning and motivation. Recent animal studies have implicated dopamine in the reinforcement of stimulus-response habits, as well as in flexible, goal-directed action. However, the role of dopamine in human action control is still not well understood. OBJECTIVES: We present the first investigation of the effect of reducing dopamine function in healthy volunteers on the balance between habitual and goal-directed action control. METHODS: The dietary intervention of acute dietary phenylalanine and tyrosine depletion (APTD) was adopted to study the effects of reduced global dopamine function on action control. Participants were randomly assigned to either the APTD or placebo group (ns = 14) to allow for a between-subjects comparison of performance on a novel three-stage experimental paradigm. In the initial learning phase, participants learned to respond to different stimuli in order to gain rewarding outcomes. Subsequently, an outcome-devaluation test and a slips-of-action test were conducted to assess whether participants were able to flexibly adjust their behaviour to changes in the desirability of the outcomes. RESULTS: APTD did not prevent stimulus-response learning, nor did we find evidence for impaired response-outcome learning in the subsequent outcome-devaluation test. However, when goal-directed and habitual systems competed for control in the slips-of-action test, APTD tipped the balance towards habitual control. These findings were restricted to female volunteers. CONCLUSIONS: We provide direct evidence that the balance between goal-directed and habitual control in humans is dopamine dependent. The results are discussed in light of gender differences in dopamine function and psychopathologies.

Dopamine precursor depletion improves punishment prediction during reversal learning in healthy females but not males.

INTRODUCTION: The neurotransmitter dopamine has frequently been implicated in reward processing but is also, increasingly, implicated in punishment processing. We have previously shown that both patients with Parkinson's disease and healthy individuals with low dopamine (DA) synthesis are better at reversal learning based on punishment than reward. Here, we extend these prior findings by examining the effects of artificially reducing DA synthesis in healthy individuals performing this previously employed task. METHODS: In a double-blind, placebo-controlled crossover design, we applied the acute tyrosine and phenylalanine depletion (ATPD) procedure to reduce global DA synthesis in 15 female and 14 male subjects. Each subject performed the reward- and punishment-based reversal-learning paradigm. RESULTS: There was a significant three-way interaction between ATPD, the valence of the outcome signalling reversal and the gender of the participants. Examination of punishment and reward-based reversals separately revealed that this was driven by a significant improvement in punishment processing in female but not male subjects following DA depletion. CONCLUSIONS: Reducing DA synthesis in healthy individuals shifted sensitivity of performance from reward to punishment processing. Gender differences in DA synthesis might underlie the selectivity of this effect to female subjects. Such gender biases may go some way towards explaining the gender biases in certain psychiatric disorders such as depression and Parkinson's disease.

Word, thought, and deed: the role of object categories in children's inductive inferences and exploratory play.

Previous research (e.g., S. A. Gelman & E. M. Markman, 1986; A. Gopnik & D. M. Sobel, 2000) suggests that children can use category labels to make inductive inferences about nonobvious causal properties of objects. However, such inductive generalizations can fail to predict objects' causal properties when (a) the property being projected varies within the category, (b) the category is arbitrary (e.g., things smaller than a bread box), or (c) the property being projected is due to an exogenous intervention rather than intrinsic to the object kind. In 4 studies, the authors showed that preschoolers (M = 48 months; range = 42-57 months) were sensitive to these constraints on induction and selectively engaged in exploration when evidence about objects' causal properties conflicted with inductive generalizations from the objects' kind to their causal powers. This suggests that the exploratory actions children generate in free play could support causal learning.