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Since Cicely Saunders founded the first of the modern hospices in 1967 the body of literature on spirituality and spiritual care in healthcare has grown. At the same time the role of Christianity as the dominant culture has declined and the role of the chaplain has changed. Spirituality is no longer assumed to be Christian but has an independent existence which has resulted in questions as to where and to whom spiritual care belongs. Despite finding that they have to explain, if not justify, their role and their salary hospice chaplains have largely failed to engage in research and written but a few articles. Therefore my initial research question asked: how do hospice chaplains understand spirituality and spiritual care? However, as a retired hospice chaplain, reflection on my own experience of the patient-focus, which leaves little time for anything else, led me to recognize that the question is too focused. Furthermore ministerial integrity, which results in a reticence to speak about the work and which struggles to accommodate the production of evidence to justify the role suggests that a broader question on the nature of the hospice chaplain's role is necessary to elicit the understanding of spiritual care. Therefore this study empowers hospice chaplains to speak openly about their work. However, as there was no data available on hospice chaplains it was necessary to carry out the first ever Profile Survey of the 162 members of the Association of Hospice & Palliative Care Chaplains. The survey was carried out online and included a question on willingness to be interviewed. From the 108 chaplains who responded twenty-five chaplains were selected, reflecting the profile, and interviewed using a semi-structured format. The findings of both the Profile Survey and the interviews are presented. From the interview data two connected themes, prophet and presence, emerged and are examined in detail. Using the work of Walter Brueggemann the prophetic aspect of the chaplain's person and work is explored, finding common ground in the concept of presence. Henri Nouwen's work provides the basis for exploring the formation of presence, revealing the importance of listening and leading to further exploration, through the writing of Jean-Pierre de Caussade, of the relevance of kenosis. In the process of analysis a number of shifting boundaries, related to the chaplain and the future of hospice care, were revealed. These are examined before presenting my conclusions and recommendations, ending with a picture of the hospice chaplain of the future.

This thesis theorizes and investigates Reflexive Networking, an innovative conceptual model for online healthcare continuing professional development (CPD) to improve impact on practice and patient care. Recently, financial pressures and the rise of the Internet have triggered a massive growth in online CPD globally. This shift assumes that online CPD causes behavior change and improves practice and care. Normative research on the impact of online CPD has mostly been in the form of positivist or realistic experiments. The evidence shows, however, that current online CPD models are failing. Because they do not affect the agency of professionals constrained by existing and new online structures, these models do not improve impact on practice and patient care. This design failure impels this thesis. I conceptualise online CPD as a dynamic process from Bourdieu’s sociological perspective on practice. Changing practice is an emergent outcome of the actions of various agents interacting across structures. I propose using technologies and pedagogies to enhance professionals’ capacity for agency and improve impact. This thesis critically and realistically evaluates the hypothesised model through an exploratory single case study with a commercial CPD provider. To test the intervention, a tutor delivered an online CPD programme to a small group of 7 doctors distributed across the UK. They had 4 facilitated online discussions over 2 months using a virtual classroom. I interpret data sets from online observations, interviews, and a before/after agency questionnaire-scale into a scientific narrative, with a touch of irony, to enable readers to understand if, how and why the process improves impact. The analysis suggests that in this case, participants’ capacity for agency increased by 13.4%. Participants were more likely to consider changing practice by discussing cases, exploring treatment options, and sharing information, opinions and advice on a targeted topic. Interpreting these findings, the more the process - including the technology – builds symbolic capital and exchanges social and cultural capital that counts as learning, the more likely busy professionals are to spend time online meshing scientific knowledge from clinical guidelines with their judgement and prior experiences, to produce practical knowledge on improving practice and patient care. Effective online CPD programmes should employ technologies and pedagogies strategically to design Reflexive Networking processes across organizations, time and distance and redirect the fields of healthcare and online CPD to deliver on ideals of evidence-based medicine. As one-off one-size-fits-all online CPD approaches such as communities of practice and e-learning modules do not affect the relative allocation of power (capitals) between professionals, educators and managers, they are disempowering. Rebooting Bourdieu for the Internet era disrupts structural boundaries and makes visible the hitherto invisible dimensions of agency for changing behaviour and practice, contributing a theoretically informed practical model to solve an urgent problem in healthcare human resource management. At a time when universal access to healthcare remains a hopeless goal, the dominant biomedical culture that has perverted online CPD to transmit knowledge and skills must be fought. Valuing ethical social relations and moral interactions is critical to produce pleasurable conformity as practice. Future researchers will craft self-regulating Reflexive Networking experiences in various CPD contexts to liberate educators and empower all practitioners - particularly those denied access in remote locations – to learn collaboratively across structures and continuously evaluate improvements in impact on practice and patient care.

Introduction: This phenomenological study explores the interactions between patients, carers, and health and social care professionals from the perspective of bereaved family carers. The research presents models of care which attend to the current picture of care. These models are presented alongside experiential data from family caregivers. Methods: Fifty-one retrospective narrative interviews were conducted with bereaved family caregivers of people with a life-limiting illness. Interviews were predominantly conducted face to face, in the North West of England. Interviews were transcribed verbatim and analysed from using thematic structural analysis. NVivo version 9 was used to manage the data. Findings: The roles and interactions between patients, family carers and health and social work professionals differed significantly across place of care and across the illness trajectory. The findings examine the following areas of family caregivers’ experiences: roles and relationships; uncertainty and reassurance; communication; and kindness and compassion in care. Conclusions: Existing models of dyadic and triadic care fail to adequately address the complex dynamics of family caregiving. The models presented in this study demonstrate the direction of support and level of responsibility of care in home, hospice and hospital care environments. A partnership approach, where family caregivers feel supported and reassured by health and social care professionals is essential to improving carers’ confidence in their role and satisfaction with the support they receive. Key words: qualitative, life-limiting illness, end of life care, caregivers, interactions, triadic care.

Towards the end of life, silence seems to take increasing prominence in caregiving relationships. A complex phenomenon, silence has been less explored than verbal interventions, yet to be an effective element of care, silence requires skill and practice from professional caregivers. This research, undertaken in the United Kingdom between 2013 and 2016, sought a deeper understanding of a type of silence that contributes to palliative spiritual care. A two phase phenomenological methodology was adopted, using heuristic inquiry and hermeneutic phenomenology. Data were gathered through self-inquiry and unstructured interviews with 15 palliative care chaplains. A descriptive and hermeneutic analysis facilitated explication of the lived experience to produce an interpretation of the nature, meaning and value of spiritual caregiving silence in end-of-life care. Spiritual caregiving silence emerges as a way of being with another person, complementary to speech and non-verbal communication, in which the caregiver takes both an active and participative role. It evokes a sense of companionship and connection and creates accompanied space, allowing the other person to be with themselves in a way they may not be able to be alone; this demands a depth of engagement from the caregiver. Silence provides a means of, and medium for, communication beyond the capacity of words and has the potential to enable change, leading to expression and acknowledgment of truth. It offers patients, and their families, opportunities to find acceptance, restoration and peace. The thesis concludes that spiritual caregiving silence is a person-centred phenomenon that supports the wellbeing of patients at the end of life, and their family members, by drawing on cross-disciplinary knowledge and experience. The interpretive process, illuminated by examples of specialist lived experience, has produced a deeper understanding of the phenomenon that may find resonance with the experience of other caregivers, to stimulate further discussion and inform clinical practice.

This thesis explores the issue of mental capacity assessment for terminally ill adults requesting physician assisted suicide. A grounded theory approach was used to explore the perspectives of senior doctors on assessment of mental capacity for this group. Twenty four doctors (nine psychiatrists, eight general practitioners, two oncologists, two palliative physicians and three surgeons) were theoretically sampled and participated in individual in depth interviews. Constant comparative analysis of the data led to the emergence of the core category of knowing the patient. Knowing and the process of getting to know were individually interpreted and depended on the doctor, the patient and their intersubjective relationship. The process of getting to know comprised three elements: temporality, dimensionality and quality leading to a sense of knowing. Contextualised knowing, the sense of knowing informed by individualised contextual factors existed on a spectrum ranging from not knowing to knowing too well. The place of the specific doctor patient relationship on this spectrum related to the way assessment might be approached based upon valued objectivity whereby an ‘objective’ assessment was valued above a ‘subjective’ judgement. To preserve valued objectivity the approach to assessment varied according to how well the patient was known. If a patient was not known or not known well, a structured/procedural approach was favoured; for patients who were known there was a tendency toward a gut feeling based approach; but when a patient was known too well there was a perceived threat to valued objectivity, then a conscious return to a procedural, structured approach was favoured in order to return the sense of objectivity to the assessment process. Comparison of these findings with those from other studies extended the model by incorporating wider contextual and temporal conditions of variation from which parallels with extant theory on the development of expert practice were drawn.

Although the experiences of family caregivers have received significant attention, there is minimal research that specifically explores carers’ confidence. Evidence shows that caregivers of hospice patients do not feel confident or prepared to care for relatives or friends who die at home. This study aimed to elicit the experience of primary caregivers who provide unpaid care to dying family members in the home setting, in order to better understand what contributes to their confidence during end- of-life care. Sixteen bereaved caregivers (14 individuals and one brother/sister dyad) from the Midwest (USA) who received support from a local hospice participated in the study. The qualitative, exploratory, cross sectional research design involved semi- structured, in-depth interviews. A narrative analysis that focused on form and content was chosen to analyse the data. Four significant storylines running longitudinally through the interviews were identified as shaping caregivers’ confidence, giving meaning to it, and contextualizing it. They were: Doing What Needs to Be Done -Story of Values and Relationship, The Beginning of the End - Experiencing Terminal Illness Story, Being Able to Handle It - Story of Needs, and The Three Family - Story of Journeying Together and Support. This study showed that carers’ confidence is shaped by the terminal illness of the person for whom they care and caregivers’ values and relationships. It is also influenced by their needs and the sources and strength of support they receive. Understanding these carer perspectives could help professional hospice staff to better support caregivers to become more confident in their care for a dying relative.

Aim This study set out to evaluate the critical success factors for implementing a new groupware technology to improve communications and support group functioning within a group of GP practices working together commissioning healthcare. Method An iterative participatory action research methodology was adopted to evaluate the implementation of groupware within a group of Fundholding practices over a period of four years. A series of action research cycles were undertaken comprising initial observation, planning action, taking action, evaluating and then specifying learning using critical reflection. The researcher was a key participant within the Fundholders group and the narrative was based on records of group activities and analysis from a series of user interviews. Results The initial AR cycle demonstrated the need for improved communications and early implementation of groupware within the group . The groupware implementation and group structure was then further developed in a second cycle which demonstrated the interplay between the group and the technology. This second cycle saw the group self reflecting and defining its purpose and goals more overtly alongside adopting groupware as a supportive tool. The final iteration showed the group maturing and linking to more practices within a changing NHS. User interviews highlighted the perceived advantages and areas for improvement. Conclusions The study has helped to demonstrate that groupware can support group performance both by enhancing the gains inherent in effective group working and also by attempting to minimize losses from working in groups. The complex and emergent process where the provision of technology may itself influence group process and development is highlighted as well as the technology reflecting the aspirations and activities of group members. The iterative action research methodology used could be used in wider settings to help ensure the successful implementation of ICT projects.

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Admission to the intensive care unit with critical illness can result in significant and wide-ranging impairments for survivors, which often persist for many years following resolution of the index illness and are now recognised as ‘post intensive care syndrome’. One component of this syndrome, peripheral skeletal muscle wasting and dysfunction that develop during critical illness are described as intensive care unit-acquired weakness (ICU-AW) and account for residual deficits in physical functional ability in post ICU patients. This thesis comprised studies examining the clinical assessment and treatment of patients with ICU-AW investigating the Medical Research Council sum-score (MRC-SS) tool, the most commonly reported technique for diagnosing ICU-AW, use of ultrasound to measure peripheral skeletal muscle architecture during critical illness, and exercise-based rehabilitation for critical illness survivors with ICU-AW. Moderate levels of inter-observer agreement and limited clinical predictive value using the MRC-SS for ICU-AW diagnosis were demonstrated, highlighting the challenges of the volitional manual muscle testing approach. Investigation of ultrasound to assess peripheral skeletal muscle architecture provided data to support technical application of this tool as a potential surrogate marker for strength in ICU patients where direct measurement may be limited. Post hospital discharge exercise-based rehabilitation for critical illness survivors with ICU-AW was explored in a pilot feasibility randomised controlled trial. Whilst no improvement in outcome was evident, process evaluation revealed methodological factors for further investigation in the design and conduct of a larger-scale trial, including development of an intervention effective beyond the extent of natural recovery observed. Follow-up of patients without ICU-AW highlighted the limitations of adopting the MRC-SS threshold to categorise diagnosis and ongoing rehabilitation requirements. A national UK survey revealed failure to implement published guidance on rehabilitation following critical illness following hospital discharge due to lack of funding, resources and managerial prioritisation, and suggests the need for a robust evidence base to support service delivery to address the currently unmet clinical need in this patient population.