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

PhD ThesisThe purpose of this thesis is to illuminate the experience of living with a ventricular assist device (VAD) from the perspective of the recipients themselves, specific focus is given to the implications of the device on recipients’ day-to-day lives. VADs are mechanical circulatory devices that support or replace the function of a failing heart. In the UK, they are used to bridge patients to heart transplantation. This study adopts an interpretive phenomenological approach using the ‘lived experiences’ of VAD recipients as the basis of the investigation. The study comprised of twenty patients living with VADs, seventeen men and three women, aged 21 to 68, all of whom had been living on VAD support for varying amounts of time. A central tenet of this thesis is that the experience of ‘Being’ a VAD recipient is underpinned by a high degree of liminality (Turner, 1969). Life, for these individuals appears to be placed on hold whilst living with the device. Liminality creeps into the experience of ‘Being’ a VAD recipient at different time points, influencing how the individual views themselves and their future, the practices employed by VAD recipients to manage this uncertainty are considered. The impact of the materiality of the VAD is also discussed, with reference to literature from science and technology studies, exploring how recipients make sense of having a piece of technology implanted into the body and the resultant impacts on identity and surroundings following this merging of the ‘self’ and ‘not-self’. The impact of the VAD on recipients’ social roles and responsibilities are explored, along with the role of VAD communities in learning to live with the device. Ultimately, this thesis suggests that the essence of ‘Being’ a VAD recipient is a pervading sense of liminality as these individuals live under the lingering shadow of heart failure

'We're like a gang, we stick together': Experiences of Ventricular Assist Device (VAD) communities

Background: VADs are relatively new developments 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 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. 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

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

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

‘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

Corporate power over human rights: an analytical framework

This paper presents an original framework designed to systemize understandings of corporate power over human rights. The framework disaggregates four sites of this power: corporations have direct power over individuals’ human rights, power over the materialities of human rights, power over institutions governing human rights, and power over knowledge around human rights. This disaggregation is derived primarily from the work of Barnett and Duvall, and focuses on effects of corporate activity, rather than the Weberian understanding of power as the ability to achieve desired outcomes. The framework captures a broad set of corporate acts based on their (potential) harm to human rights. It is argued that understanding business and human rights through the lens of power can help to advance a more comprehensive account of business impacts on human rights

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

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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