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Background The study's genesis is the author's district nursing role caring for increasing numbers of individuals at home with severe obesity (BMI ≥40 kg/m2 ). Such individuals often experience physical disability and functional limitations associated with severe obesity, needing help at home from community health and social care services. Care needs can pose previously unknown challenges for care providers. Little evidence exists to guide quality of care, service development or effective use of resources. Aim To better characterise the population with BMI ≥40 kg/m2 who require help at home from community health and social care services. Key questions are: 1. How many people known to health and social care services have a current BMI ≥40 kg/m2 ? 2. How many of these are known to be housebound or in care? 3. What health and social care services does the BMI ≥40 kg/m2 population use? 4. What are the costs of these health and social care services? 5. What are participants' experiences of using these services? Methods A scoping review of international measured prevalence data on adult BMI ≥40 kg/m2 applied a broad search strategy, utilising diverse sources. An instrumental case study approach was used to explore the approvals process for this mixed-methods, observational study, engaging routinely-collected data. In a representative United Kingdom local authority, consenting individuals with severe obesity were recruited via community health and social care professionals. Participants were visited at home by the investigator, where height and weight measures were taken using specialist weighing scales and alternative height measures where needed. An investigator-administered questionnaire recorded participants' self-reported need for help at home, including use of community health and social care services. Data were verified against routinely-collected data in health and social care records. Local and published sources informed a detailed micro-costing. Community services were also asked to identify eligible adults in a "census" of their caseloads. A nested qualitative element involved participants undertaking individual, audiorecorded, semi-structured interviews, which were transcribed and analysed using reflexive thematic analysis. Results Eighteen countries, across five continents, reported BMI ≥40 kg/m2 prevalence data in surveys since 2010: 11% of eligible national surveys examined. Prevalence of BMI ≥40 kg/m2 ranged from 1.3% (Spain) to 7.7% (USA) for all adults, 0.7% (Serbia) to 5.6% (USA) for men and 1.8% (Poland) to 9.7% (USA) for women. Limited trend data covering recent decades support significant growth of the population with BMI ≥40 kg/m2. Formal approvals by nine separate stakeholders from four different organisations took nearly three years, including fifteen initial or revised applications, assessments, or agreements. Fragmented data systems, multiple data controllers, and a changing data governance environment created challenges to using routine data, requiring study design modification. Twenty-five individuals (15 women) participated, aged 40-87 (mean=62) years, BMI 40-77 (mean=55) kg/m2 : 20 participants (80%) were housebound. Incomplete census data identified a further 261 eligible individuals. Weights ranged from 98.4 to 211.8 kg (mean=150 kg), with 16 participants requiring bariatric scales. For six people unable to stand, wheelchair scales(n=1), bed weighing scales (n=2), routine weights from care home records (n=2) or weight data from hospital records (n=1) were used. The standard portable stadiometer was usable for only one participant: Others required alternative measures from which to estimate height, which gave diverse heights. Twenty-two different cross-sector community health and social care services were used. Only five participants had contact with weight management services. Twenty-four (96%) participants used three or more services, with longest care episode lasting over 14 years. Total annual service costs incurred by participants varied from £2,053 to £82,792 base case estimate, mean £26,594 (lower estimate £2,053 to £80,064, mean £22,462; upper estimate £2,053 to £88,870, mean £30,726), with greatest costs being for social care. Nine women and three men (n=12) participated in qualitative interviews, aged 40-76 (mean 60) years, BMI ranged from 45-74 (mean 59) kg/m2 , eight were housebound. Three overarching themes were identified. Firstly, the hidden struggles of living with a larger body impacted all participants, including functional limitations affecting mobility and personal care. These contributed to a sense of being stuck physically, socially, and biographically, partially due to poor treatment options. A second theme found explicit weight bias was commonly, but not wholly, denied. However, most participants related implicit weight bias by a system structurally unprepared to care for people with severe obesity. The majority of participants showed strong internalised weight bias, linked to shame and self-blame for their poor function and larger bodies. Thirdly, a day-to-day coping theme highlighted strategies regularly used by participants: resigned acceptance, avoidance and denial, exercising choice, and support from informal carers. Conclusion Accurate prevalence data for the population with BMI ≥40 kg/m2 is under reported. International health surveys could improve data availability by publishing disaggregated data beyond BMI ≥30 kg/m2 . Current practice regarding anthropometric measures likely excludes people with severe obesity and functional limitations. Specialist scales and standardised methods for height estimation appropriate for people with severe obesity are needed. Lack of data impairs surveillance of population trends, understanding of causation, societal provision for individuals living with higher weights, and the effectiveness of future service planning. Practitioners face a complex approvals process to use data they routinely collect for research or evaluation purposes. Data sources for poorly documented community health and social care services exist and are navigable at an individual level. Population-level usage of such records needs developed. Adults with severe obesity, including those under 65 years, may need sustained care from multiple community care services, with potentially high annual costs. Economic evaluations of obesity and weight management need to include these wider care costs to ensure completeness. Participants experienced unmet physical and psychological care needs associated with their larger bodies, leading to poor quality of care and life. Given rising prevalence, changes to care services are required. Specific recommendations include staff training about needs of people with severe obesity, ensuring the physical infrastructure of care services can safely accommodate people with severe obesity, and improving access to effective, person-centred weight management treatments, with strategies to tackle internalised weight bias. Future research could explore how the duration and severity of obesity affects an individual's functional limitations, subsequent need for care, and quality of life.

The illness experience of Huntington's Disease (HD), a rare genetic progressive fatal neurological disorder, receives scant attention in qualitative research despite the historical stigma and shame associated with the movement disorder, serious mental illness, and the pervasive suffering it causes to the individual and their families. This in-depth narrative study aims to give voice to the person with HD and explore how they construct their illness narratives. It draws upon illness storylines and dialogic approaches to narrative analysis. A scoping literature review on HD illness experience and a Participatory Research Exercise (PRE) with HD stakeholders informed the creation of the narrative cases. A total of nineteen participants were involved at various stages of the study: ten participants in the PRE, and nine in the narrative cases. At the heart of the study were three stories of people with HD, supplemented by their family caregivers and health care professionals. Multiple sources and methods of data collection were used, including biographical interviewing, genograms, life story booklets and other personalised artefacts. The tailored narrative methods supported the narration and construction of the story of the person with HD sustained during 18 months of participation in the study. The HD stories revealed the unique illness experience of three people in different disease trajectories. The interviews were analysed using Arthur Frank's (1995) archetypal storylines and an additional storyline was added due to the unique nature of the HD experience. The study proposes the novel storyline of Resignation, for Restitution is no longer possible for this terminal illness, and has receded into the background of participants' stories. The study highlights how the narrative methodology can provide valuable insight into the HD illness experience and contributes to a limited HD qualitative literature on the use of multiple data sources through a longitudinal approach in studying illness experience. The study also begins to fill the gap in physiotherapy knowledge on the illness experience of HD. From a physiotherapy perspective, listening to storylines can provide a rich understanding of people's experiences by examining social, cultural and contextual factors which can help clinicians develop educational resources to inform better patient care and help support advocacy efforts.

Background: nurses play a crucial role in the early recognition and management of the deteriorating patient, as they are responsible for the care they provide to their patients (Hogan et al., 2019; Connor et al., 2020; Burdeu et al., 2021). A part of this care is the monitoring of the patient's vital signs, such as blood pressure, pulse, respiratory rate, and temperature, which are fundamental in the surveillance of health deterioration. The aim of this study was to understand the process of nurses' recognition and response to patient deterioration in more detail. Methods: a generic, qualitative approach was adopted (interpretive description), guided by the work of Thorne et al., (1997) and used as the methodological framework. The theoretical perspectives used to underpin this study were Benner's (1984) work from "novice to expert", which focuses on intuitive perception and clinical reasoning in nursing, and the Cognitive Continuum Theory, developed by Hamm (1988) and revised by Standing (2008) to enhance the understanding of how nurses formulate their decisions to escalate the patient's care. Data collection: data were collected using semi-structured interviews, a simulation exercise, and four focus groups. The total number of participants recruited was 46. Phase One in-depth interviews (n=10) Phase Two simulation exercise (n=20) Phase Three focus groups (n=16) The participants were nurses working within an acute NHS Trust and were equally represented from inpatient medical and surgical wards. They were recruited based on their experience of nursing the deteriorating patient. Results: numerous themes emerged in Phase One, which were as follows: main themes (1) Collegial relationships; (2) Intuition; and (3) Interpretation of the NEWS system (National Early Warning Score). Several subthemes included clinical credibility, confidence, competence, knowledge, decision-making and organisational culture. The main themes constructed within Phase One, also emerged within the two other phases, providing a consistent theoretical link between all three phases of the study. A simulation exercise, which replicated the five stages of an actual Medical Emergency call, was developed to aid data collection in Phase Two. This exercise identified the importance of experiential and theoretical knowledge when used in combination to recognise early warning cues of health deterioration. Barriers to this process were acknowledged, which included difficulties faced by the participants when attempting to escalate the patient's care. Finally, their deficiency of theoretical knowledge was emphasised by the participants, which exposed their own self confidence in their ability to challenge the requested medical review process of patients. Phase Three yielded some fresh insights and revealed a widespread acceptance in terms of the content and delivery of this unique simulation. Conclusion: This study provides a meaningful understanding of the process of nurses' recognition and response to patient deterioration, by facilitating an insight into the hidden narrative surrounding this practice. Unlike other studies within this field of inquiry, this study focuses on the importance of this narrative to explain why this practice prevails, in addition to highlighting the potential remodelling of some aspects of this care to improve patient outcomes. Moreover, this study questions the literature in terms of whether nurses are missing cues of patient deterioration as reported, suggesting their voice is simply lost within this convoluted process, offering a different focus to direct future research within this field of inquiry.

Background: Midwifery units (MUs) have been demonstrated to be safe for neonates, safer for mothers, cost effective and associated with staff and user satisfaction. In some EU countries MUs and midwife-led care are more established than others. Italy has one of the highest caesarean section rates in Europe and there are currently only few alongside midwifery units (AMUs). In Tuscany, a hospital is working towards the creation of its first AMU. The transition from the default obstetrically led maternity services to an integrated model with a MU represented an ideal opportunity to examine implementation of international guidelines in national and regional context. Methods: This PhD aimed to explore the organisational, cultural and workforce factors influencing the implementation of a new midwifery unit in a European context using Participatory Action Research (PAR). Qualitative and quantitative methods were used and professionals, managers and service users were included. Starting from a systematic review of international literature and a situational analysis of the local context, local stakeholders codesigned an implementation plan in a collaborative way using a Delphi approach. Service users were included via focus group initially and via online surveys once the Covid 19 pandemic hit. Findings: 86 professionals and managers and 522 service users took part in this study between 2019 and 2021. Barriers and facilitators were identified during systematic review and situational analysis. The local team identified ten themes to focus the implementation work on: team vision, creation of a multidisciplinary advisory group, creation of a dedicated group of midwives, implementation of the intrapartum guidelines for low-risk women, appropriate risk assessment, integration hospital-community, midwifery and multidisciplinary training, communication and information for service users, effective communication within the maternity team and reflective practice via audit and debriefing. Service users supported the initiatives proposed in the plan and expressed openness towards the MU implementation. Conclusion: This was the first study observing the pre-implementation process of a MU in a European context including maternity team, managers and service users. A multi-layered approach to change is required when implementing this model of care addressing structural, organisational, professional and cultural issues. This work showed value in a participatory codesign approach to facilitate change. While this work is unique for the Italian context, the findings could help similar international contexts approaching this change.

Background: Group antenatal care (GANC) is a midwife developed model of antenatal care wherein participants receive clinical care, education, and support in a group setting. It offers an opportunity to provide people with midwifery care and a positive pregnancy experience, in line with global health policy directives. This thesis foregrounds previously unexplored perspectives of midwives facilitating GANC, considering the effect of GANC on job satisfaction and changes to midwifery role and identity, with a view towards understanding the sustainability and feasibility of this model for midwives in diverse contexts.  Design and methods: The research used three-phased mixed methods design. The first phase was a systematic review of the existing global qualitative evidence (n=19) around healthcare providers' experiences of facilitating GANC. The results, analysed thematically, highlighted knowledge gaps and informed the next two phases. A cross sectional survey of midwives that facilitate GANC in the U.S. and the Netherlands (the first countries to integrate GANC as part of normal care) was followed by in-depth interviews. The findings were integrated at three points; gaps identified in the review informed survey development, qualitative interviews were used to dive deeper into survey findings and integrated again at analysis. Findings: The systematic review identified themes relating to provider role, workload and satisfaction. Most surveyed midwives (n=82/125: U.S.) and (n=66/101: Netherlands) found facilitating GANC more satisfying than standard care and stated they could take more time within the visit and deliver more quality care this way. Many also found it to be more work than facilitating standard care. In follow up interviews American (n=12) and Dutch (n=9) midwives described facilitating GANC as meaningful midwifery work, that allowed them to develop relational care by taking time, holding space, and using facilitation skills. Midwives facilitating GANC experienced a network of support with participants, fellow midwives and other professionals that enabled an enjoyable experience of antenatal care as transformative and empowering for the participant women and families. Midwives in both nations identified funding as a primary sustainability barrier, amongst other organisational pressures. Midwives also expressed concerns that the work midwives undertake in GANC is not sufficiently valued as work, by colleagues and the system.    Conclusions: Future policies should consider the positive potential of GANC implementation to offer job satisfaction to midwives as well as the ability to optimize their professional skillset. Furthermore, valuing and funding midwifery work in the antepartum period through support of models like GANC that align with midwifery philosophy could strengthen quality maternity care systems in multiple contexts.

Introduction The number of people living longer with life-limiting conditions continues to increase. However, this increase has not been matched with adequate growth to health and social care services. Consequently, there is an increasing reliance on family members and friends who offer their time and resources to act as a caregiver. Caring for people who are living with life limiting conditions is predominantly expected of female family members. The caring role has become increasingly enduring and complex and puts those undertaking it at an increased risk of experiencing negative consequences related to their physical and mental health. This thesis describes a three-year project that explored the population of people from Glasgow who care for individuals with at least one life-limiting condition and their experiences with support services. Methods The aim of the project was to begin the process of developing an intervention for caregivers, that could be implemented in NHS Greater Glasgow and Clyde. This project was underpinned by the transformative intervention paradigm and influenced by feminist theory. Three steps of data collection and analysis were undertaken to achieve the aim. The steps included a modified systematic review of outcome measures used in trials of interventions for caregivers. This was followed by a secondary analysis of needs assessments carried out by the Glasgow City Carers Team. Finally, focus groups and interviews were carried out with caregivers from Glasgow to describe their experiences in using interventions and working with professional groups to help identify what was missing from what was available. Findings This project identified that there is considerable heterogeneity in caregiver intervention description and evaluation, which makes drawing conclusions about efficacy difficult. This variation is mirrored in the demographics of people who require needs assessments for their caring responsibilities in Glasgow. Speaking directly to caregivers through focus groups and an interview identified that professionals who interact with caregivers often add to, rather than reduce caregiver burden and stress. Participants described that current support is not flexible enough for them and does not offer continuity and accessibility. What is missing from what is available is a single point of contact that supports caregivers to manage their own health and wellbeing alongside the health of the person for whom they care. Consequently, an array of interventions and approaches to care and support for caregivers may be useful to caregivers. However, as many people who support people with life-limiting conditions do not recognise themselves as caregivers, access and visibility must be considered for any future interventions. Conclusion Future research should consider place-based interventions that address the unmet needs of caregivers. However, changes to existing services and professional conduct that offers caregivers continuity, opportunities to work in collaboration and respectfully communicate might reduce or remove the need for some caregiver interventions altogether.

A decolonial and trauma aware approach centring Islamic epistemology in understanding British Muslims' experiences of the perinatal period. This thesis provided a review of the literature, an explorative decolonising methodological approach and empirical qualitative study and analysis in understanding what are British Muslims' experiences of pregnancy and birth. A systematic review and meta ethnography were conducted of international papers qualitatively looking at Muslims' experiences of pregnancy and birth. The sample were 223 Muslims; 190 Muslim women and, 33 Muslim men. A conceptual framework arising from the systematic review was produced based on the six emerging themes which were: the role of religion as a supportive factor, experiences of health care systems (including language barriers, communication and discrimination), influences of culture and patriarchy, the role of relationships and family (including level of support available), and transition to parenthood. This review laid out the paucity of research on the topic of British Muslims' experiences of pregnancy and birth. The decolonising methodologies approach highlighted issues of epistemicide and ongoing health and social injustices and inequities and set the context for a decolonial approach in carrying out empirical research and understanding, interpretation and analysis of data in relation to Muslims experiences of the perinatal period. Through the decolonising approach and centring of an Islamic ontology a 11-point model was created demonstrating the Islamic reflective ontological paradigm adopted for the research process. A Reflexive Thematic Analysis was applied to qualitative online surveys and Narrative inquiry composite case study method to interviews. The process of the RTA developed six key themes: the significant role of Islam during pregnancy and birth, experiences as impacting mental health and emotional states, the importance of social circumstances, NHS experiences: the good, the bad and the ugly, empowerment and recommendations. Consideration included health inequalities and the role of healthcare providers, medicalisation, power and control over women's, bodies, choice, birth trauma terminology. The need for faith sensitive (Islamically rooted) healthcare provision and research for Muslims during the perinatal period was posited.

The experience of moral distress has been studied extensively in developed economies where it was originally conceptualized, however, there is a paucity of studies on moral distress in nurses in developing economies. The goal of this study was to understand the perception and experience of moral distress in nurses working in Neonatal Intensive Care Unit (NICU) and paediatric wards in Northern Ghana. A qualitative descriptive approach was used to collect data from 40 nurses and 14 nurse managers about their experience of moral distress and support measures nurse managers render to nurses who experience moral distress. Thematic analysis showed 7 themes: 1. nurses experienced morally distressing situations, 2. causes of morally distressing situations among nurses, 3. the impact of morally distressing situations on nurses, 4. coping mechanisms of nurses who experienced morally distressing situations, 5. recommendations by nurses to reduce the incidence of morally distressing situations, 6. inadequate support measures offered by nurse managers to address morally distressing situations in nurses and 7. moral distress experienced by nurse managers. The findings of the study were that Ghanaian nurses perceive and experience moral distress, that the contributing factors to moral distress are mainly organizational in origin, and that there are few support measures available to nurse managers to help nurses navigate morally distressing situations on the wards. The effects of moral distress were also highlighted in this study. Lessening the experience of moral distress is critical because of its detrimental effects on nurses and the health care system. Nurses and nurse managers who have been affected by moral distress may leave the nursing profession and this will ultimately add to the problem of a shortage of nurses and nurse managers in Ghana. In the light of these findings more resources are needed by healthcare institutions. Stakeholders in the Ghanaian health care industry should explore coping strategies for moral distress to retain nurses and nurse managers to ensure quality patient care.

Background: Staffing shortages are affecting an increasing number of health services globally. Predictions suggest that the shortages will worsen in the future. There is a broad consensus that leaders at all levels must do more to support and develop current employees. In Oman, published data suggests there is an ~ 30% shortfall in the required number of nurses to meet the population health demand. More attention is being given, to explore the factors associated with intention to leave. There is a scarcity of research to inform why nurses decide to stay. Understanding the factors that predict nurses' intention to stay would help organisations plan retention strategies more effectively. Aim: This thesis reports a PhD study that aimed to; explore the concept of a healthy work environment, review the literature pertaining to intention to stay/leave and the healthy work environment and finally it investigated the relationship between intention to stay and the healthy work environment among nurses working in three public hospitals in Muscat, Oman. Methods: A multi-method, multi-phased, study consisting of a concept analysis using Walker and Avant's framework was used to define the concept of the healthy work environment (HWE) and identify its attributes (phase one); a systematic review to identify, select, quality assess, extract and synthesise the findings reported in published papers which examined the relationship between the work environment and nurses' intention to stay (ITS) in the acute healthcare setting (phase two), two steps of piloting including assessment of potential tools and evaluation of their clarity, suitability and acceptability to be used in the Omani healthcare setting. Finally, a cross-sectional survey to investigate the impact between the healthy work environment and other independent variables on the nurses' intention to stay using path analysis. Results: Five attributes of the healthy work environment were identified from the literature and were used to define the concept and build the study's conceptual framework relating to intention to stay. In the systematic review, four main categories were identified that related to intention to stay: individual indicators (personal and professional), organisation/profile, work environment, and patient related. Several work environment variables were identified in the review and were significantly associated with nurses' intention to stay, such as leadership practice, empowerment, nursing workload and team interaction. Based on the reviews' findings and the previous intention to stay's framework, a proposed framework was developed and tested. The final model explained 63% of the variance in regard to intention to stay and furthermore showed that organisation commitment, nurses' satisfaction, and healthy work environment' attributes have a substantial effect on nurses' intention to stay. Leadership and empowerment had the strongest impact on intention to stay among the HWE's subscales. Nurses' satisfaction and organisation commitment were indirectly associated to intention to stay through the nursing profession characteristics. Discussion: Based on the results from the PhD study, a number of issues were identified including the role of leadership, empowerment and team working, global nursing workforce initiatives to 'fill the gap' as well as public and professional perceptions of nursing. Several issues related to Oman and the International nursing workforce shortage were discussed. Recommendations include a need to share, customise and utilise International initiatives which embrace the retention of nurses' and enhance role empowerment, such as Magnet accreditation. Further recommendations were provided relating to future research. Conclusion: With current and projected nursing workforce shortages, there is a need to retain nurses in healthcare organisations. Although, improved salary payments are likely to assist organisations attract talented nurses, organisations need to do more than that, to retain them. The factors that attract nurses are not necessarily the factors that will retain them. Establishing and maintaining a healthy work environment, where nurses are allowed to practice independently and grow professionally, will enhance intention to stay and therefore are recommended as a worthwhile investment.

Background: Traumatic childbirth can cause ongoing distress, often called birth trauma. Such distress can affect women, their partners, and the couple relationship. Good quality couple relationships are important to the well-being of individuals and the wider family. Aims: This thesis aimed to investigate the impact of birth trauma on the couple relationship and associated requirements for birth trauma support. Methods & Results: The thesis aims were addressed through four pieces of research. Two systematic reviews and meta-syntheses to investigate: (1) the impact of childbirth related PTSD or PTSS on the couple relationship (n=7); and (2) the impact of becoming parents on the couple relationship (n=12). These reviews reported a range of impacts on the couple relationship with some similarity in themes across reviews. However, the impact of birth trauma was perceived more negatively. Two empirical studies were conducted: (1) a survey of UK healthcare practitioners (n= 202) investigated assessment and observation of birth trauma and related support; and (2) interviews with UK parents investigated their experiences of the impact of birth trauma on the couple relationship and associated support needs (n=18). Empirical studies reported that barriers exist to accessing birth trauma support for the couple relationship, that current support is limited in effectiveness, and enhancement of dyadic support is required. Thesis findings were synthesised into two proposed models: (1) the impact of birth trauma on the couple relationship; and (2) the birth trauma support required by the couple relationship. Discussion & Conclusions: Thesis findings suggest that birth trauma can have a negative impact on the couple relationship. However, some report that birth trauma can strengthened the relationship. Current support for birth trauma is limited with little evidence of effectiveness. Thesis findings indicate how birth trauma support for the couple relationship could be enhanced. Implications for research and practice are considered.

Background: Manual restraint is a 'hands on' type of physical restraint used by staff in inpatient mental health care and beyond to maintain patient and staff safety. However, its use has been linked to adverse physical and psychological patient and staff outcomes, and a recognised need to minimise manual restraint use globally has arisen. Despite the high reported rates of manual restraint use within inpatient child and/or adolescent mental health care, little research has been undertaken exploring the manual restraint experiences and perspectives of staff and young people in this setting. Objective: The purpose of this qualitative study was to explore nursing staff's experiences of using manual restraint within inpatient adolescent mental health care. Methods: Individual in-depth videoconference interviews were conducted with 12 nursing staff recruited from four inpatient adolescent mental health hospitals across three National Health Service Trusts in England. Interviews were transcribed verbatim and data analysis was undertaken through a descriptive phenomenological methodology using reflexive thematic analysis. Results: Four themes were generated from the analysis which captured the essences of participants' experiences: It needs to be done . . . sometimes; It's not a nice thing to do; It doesn't really damage the therapeutic relationship; and Importance of team support. Whilst reporting that it was sometimes necessary to manually restrain young people for substantial safety reasons, participants spoke with dislike about its use, and described consequential aversive experiences of emotional distress, patient aggression, pain and injury, and exhaustion. Participants reported relying on each other for emotional and practical support. Conclusion: The findings provide unique insights into the manual restraint experiences of nursing staff working within inpatient adolescent mental health care. Implications for practice and research are discussed in relation to the inclusion of temporary nursing staff and young people, and recommendations for manual restraint minimisation programmes are made.

Background: Patients who deteriorate without recognition and/or response are at risk of unplanned admission to intensive care, cardiac arrest, death (termed Serious Adverse Events (SAEs)). To mitigate SAEs, track-and-trigger tools are used internationally to prompt healthcare practitioners (typically nursing staff) to recognise physiological changes that signal deterioration, and to contact a practitioner with expertise in acute/critical illness. In the United Kingdom and parts of Europe, the National Early Warning Score (NEWS) (track-and-trigger tool) was developed and disseminated widely to standardise practice. Despite evidence track-and-trigger tools (like NEWS) improve patient outcomes, their translation into clinical practice is inconsistent. This is partly attributed to nursing staff failing to change their behaviour. Aim: To develop a theory-based, preliminary, behaviour change intervention, to enhance enablers and overcome barriers to Registered Nurses (RNs) and Healthcare Assistants (HCAs) enacting expected behaviours in recognising and responding to signs of patient deterioration. Method: A mixed methods design with three phases: 1. Focused ethnography on two clinical floors in an acute hospital to compare directly observed behaviours (of RNs and HCAs) with those specified in policy. From directed content analysis of field notes, target behaviours were identified, specified, and shortlisted; 2. Brief (not audio-recorded but recorded in field notes) interviews were conducted soon after direct observation of relevant behaviour. Some brief interview participants were recruited for an audio-recorded, semi-structured, interview informed by a Theoretical Domains Framework (TDF) topic guide. Interview data were analysed deductively (the 14 TDF domains were coding categories) and inductively to identify determinants (i.e. barriers and enablers) of target behaviours. TDF domains representing important determinants were identified using published criteria and linked to Behaviour Change Techniques (BCTs) from expert consensus literature; 3. BCTs were shortlisted by the research team and presented to clinical stakeholders alongside example applications (i.e. concrete strategies for operationalising BCTs). Using Nominal Group Technique, stakeholders ranked BCTs and their potential applications for acceptability and feasibility. Ranking data were used to inform the content of the preliminary intervention. Results: During 300 hours of fieldwork, 499 items of data (i.e. an episode of observation or a set of vital signs from chart review) were recorded; 289 (58%) associated with expected (i.e. policy-specified) behaviour; 210 (42%) associated with unexpected behaviour (i.e. alternative behaviour or no behaviour). Ten behaviours were identified as potential behaviours for change; shortlisted to seven target behaviours. Brief interviews were conducted with 39 RNs and 50 HCAs, and semi-structured interviews with 16 RNs and 16 HCAs. Quotes from interviews were linked to nine (for brief interviews) and 14 (for semi-structured interviews) TDF domains. Nine TDF domains were identified as being of high importance: Knowledge, Social Professional Role and Identity, Beliefs about Consequences, Reinforcement, Intentions, Goals, Memory, Attention and Decision Processes, Environmental Context and Resources, Social Influences. These domains were linked to 50 BCTs; shortlisted to 14. Ranking data from two nominal groups held with 19 stakeholders were used to shortlist further, resulting in a preliminary intervention that includes an educational package and 12 BCTs that will be delivered through workshops and on acute wards, using 18 applications. Conclusion: This research makes a unique contribution to the international body of evidence, as it is the first study where a theoretical framework of behaviour change has been used to model an intervention to improve responses to deteriorating patients by RNs and HCAs. The intervention is preliminary, as it is anticipated that it will be refined during a subsequent feasibility study (a programme of work planned for after this PhD).

Introduction: Most maternal deaths which occur in the world are recorded in Low and Middle-Income Countries (LMICs). Home visits offer opportunities to educate pregnant women on care practices and safer delivery options. Objective: To review and synthesise the evidence on the effects of home visits to pregnant women, and to investigate CHW/CHN partnerships for home visits, for improved skilled attendant at birth and other health outcomes for mother and baby. Methods: First a systematic review and meta-analysis was conducted. Medline, Embase, Cochrane databases were searched for published data on trials, which assessed the effects of home visits. Then a clusterrandomised controlled trial was conducted where, after an intensive community mobilization, CHWs provided three follow-up visits to pregnant women enrolled in ten intervention zones. Women in control zones had usual care. Independent assessors collected data on health outcomes after delivery, for the intention to treat analysis. Results: The systematic review did not find a study where CHWs partnered with other cadres to conduct home visits. The results showed that home visits to pregnant women led to improvement in SAB (OR1.5 (95% CI: 1.2, 2.0) and other care practices. However, the pooled data in a meta-analysis did not show a statistically significant difference in overall neonatal mortality among intervention and control arms (Pooled RR: 1.002 (95% CI 0.922, 1.089). The field trial had widespread acceptance among community members with 952 women participating. CHW-CHN partnerships led to high Skilled Attendant at Birth among intervention arm, 98 percent, and controls, 89 percent. There was a statistically significant difference on the effect of home visits on SAB among intervention arm, compared to the controls (Odds Ratio, OR: 5.24, 95% Confidence Interval, CI: 2.70 to 10.17), and with a statistically significant p-value of < 0.001. Regarding neonatal indicators, breastfeeding initiation was significantly affected by the home visits (OR 2.89 (95% CI 1.21, 6.90), p=0.001) as well as BCG vaccination statuses at month 1; OR 3.10 (95% CI 1.73, 5.56), P=0.001. Conclusion: CHW/CHN home visits to pregnant women led to improvements in some care practices for mothers and babies. Innovative approaches where trained health staff and clinically oriented cadres such as CHNs partner with CHWs during home visits, could lead to better health outcomes in LMICs. Community mobilization was identified as an essential contributor to the successful field work. Further research on cost effectiveness of these partnerships is needed.

The retention of nurses, particularly those in their first year of practice after qualification, is a global concern. The forecast deficit of nurses in the workforce over the forthcoming decade has the potential to impact on patient safety and patient experience. The aim of this explanatory sequential, mixed methods, two-phase study was to explore the feasibility and acceptability of co-producing and implementing an intervention to increase retention of early career nurses. The study was conducted across a university and a large inner London hospital NHS Trust. Initially two systematic reviews were conducted, to identify the components of interventions that have previously been shown to be successful at reducing turnover and increasing retention of early career nurses. Interventions implemented both prior to and after qualification were reviewed. Findings from these reviews indicated that beneficial interventions implemented during educational programmes included elements of preceptorship, exposed students to the reality of the clinical environment, and involved collaboration between the academic and clinical institutions. Consideration should be given to whether there is added value to implementing interventions during the undergraduate period if there are established and well-evaluated strategies already in place in the first few months following graduation. For interventions implemented in the post-graduation period, those incorporating internship/residency programmes and orientation/transition to practice programmes, lasting between 27- 52 weeks, with inclusion of a teaching and preceptor and mentor component had beneficial impacts on retention. Phase 1 involved co-production of an intervention with early career nurses and student nurses and evaluation of the acceptability of the process. The co-produced intervention consisted of four additional days of interactive content to be delivered during the final year of the nursing programmes. Acceptability of the process was evaluated from the perspectives of the group members and facilitators using questionnaires, analysis of reflective facilitator field notes, and semi-structured interviews. The process was perceived as generally acceptable and increasingly acceptable over time. Participants developed transferrable communication skills, felt an increased sense of wellbeing, and enjoyed using the group as a reflective space. Facilitators were aware of navigating tensions between individual benefit and study outputs but recognised that they gained personally from engaging with the process. Phase 2 aimed to implement the co-produced intervention and evaluate acceptability and feasibility to inform wider implementation. Seventy-four students participated, and academics were involved in the delivery of the intervention. Pre- and post- acceptability questionnaires, semi-structured interviews, focus groups and reflective field notes were analysed to explore acceptability and feasibility. The intervention was perceived as generally acceptable with significant positive increases in acceptability scores over time. Students perceived the intervention equipped them with skills and experience that offered enduring personal benefit. Pressures in the practice and academic environments presented challenges with attendance. The personal benefits that participants reported align with known protective factors against burnout and leaving the profession. The systematic reviews and findings from both phases of the study offer new knowledge in relation to co-production across clinical and academic settings, and the design and implementation of interventions to increase retention of early career nurses. Wider implementation of the intervention requires planning to take account of differences in higher education and healthcare organisational culture, and the processes that would empower student and early career nurses to make informed career decisions.

The health psychology doctorate is evidenced by this portfolio towards the fulfilment of the five competencies, consultancy, teaching and training, behaviour change intervention, research, and professional practice. During the doctorate the following placements were undertaken, a Trainee Health Psychologist at a charity to support victims of honour-based violence, Health and Wellbeing Adviser for a charity to help people who are long-term unemployed with their health conditions and a self-employed coaching psychologist at Mindbody Coaching helping people achieve their health and wellbeing goals. Consultancy: A professional report, presentation and case study was produced for the Associate Director, Clinical Lead and Health Coach of an employment charity based in the North of England with aims to improve their existing weight-management programme. The presentation included information on conducting empirical health behaviour change research and the report contained a literature review on psychological barriers to weight-management from a Health Psychology perspective. Teaching and Training: A ten-week telephone-based group mindfulness course, Wellbeing Wednesdays, was taught to staff at the employment charity placement with aims of providing experiential learning of mindfulness skills and improving resilience to stress. The author's progression and application of teaching and training skills to additional opportunities is demonstrated in the Teaching and Training Diary included in this section. Behaviour Change Interventions (BCI): A group ten-week mindfulness course, Wellbeing Wednesdays, was implemented for staff at an employment charity as an experiential BCI to facilitate mindfulness behaviours and resilience to stress. In addition, a six-session one-to-one Acceptance and Commitment Therapy (ACT) BCI was conducted with a private client of my coaching psychology services, Mindbody Coaching, with aims of removing psychological barriers to weight-management. Research: this portfolio contains three individual research projects. A systematic review was conducted with aims of exploring the breadth and quality ACT interventions used within coronary heart disease patient populations. Additionally, a qualitative and quantitative research project explored the experiences of the Mind your Heart online webinar intervention and psychological adjustment process in people with coronary heart disease. A reflective commentary on the process of all three research projects is included. Professional skills: As evidence of professional skills development as a health psychologist in training, such as meta-reflection, working in a therapeutic environment, adhering to ethical guidelines, codes of conduct and UK law, a reflective report is presented. Included is a reflective diary which was sustained throughout the whole professional doctorate course. Conclusions The consultancy highlighted the value of sharing expert knowledge in conducting health psychology empirical research to support multidisciplinary weight-management services. The teaching and training project, dovetailed as the group BCI, Wellbeing Wednesdays, was effective at providing experiential learning of mindfulness skills and behaviours, however, was not successful in increasing the participant's resilience to stress. Reasons for this are postulated in the report. The one-to-one BCI case study was effective in addressing psychological barriers to weight-management and facilitated behaviour change evidenced by increased psychological flexibility scored and a significant reduction in weight in lbs and waist circumference by the final session. The systematic review highlighted the gap in UK literature base for use of ACT interventions with people living with coronary heart disease for behavioural health outcomes known to reduce risk of second coronary events and premature deaths. The Mind your Heart research project showed a significant difference from baseline at two-weeks post measure against a control group for acceptance and rejection-based illness identity. This indicated that acceptance was improved, and rejection was reduced in people with CHD by taking part in the online psychological intervention which supports the literature. Future recommendations are highlighted through the limitations including conducting a live online webinar and exploring wider behavioural health outcomes such as sleep, physical activity and stress management. Finally, the qualitative research highlighted a gap in psychological care for those rehabilitating from a cardiac event and themes of healthcare experience, beliefs and perceptions of CHD, psychological adjustment and Mind your Heart webinar feedback are explored. Participants direct future recommendations for the Mind your Heart intervention.

Background: The management of end-of-life conversations in hospital settings has been discussed and debated for more than a decade, with commentary being raised by the government, national bodies, and regulators (DoH 2008, 2009, 2017; PHSO, 2015; CQC, 2016). Many studies have evidenced the way in which this can be improved in specialist settings; however, there is a dearth of empirical evidence in general wards where most hospitalised patients die (ONS, 2021). Aim: The aim of this study was to explore the impact managing end-of-life conversations has on nurses working in adult acute general (non-specialist) inpatient wards. Method: A constructivist grounded theory approach was used (Charmaz, 2014), with data collection occurring in four district general hospitals in the East of England. Purposeful and theoretical sampling recruited a total of eleven registered nurses. Data were collected using semi-structured interviews, which were audio recorded, transcribed verbatim and were analysed using the constant comparison method on the NVivo QSR system. Findings: Five theoretical categories were co-constructed from the data to explain the processes of managing end-of-life conversations and their subsequent impacts. The categories of walking the path with the dying, walking the path with the grieving, battling time, becoming lost and finding the way form the substantive theory of Navigating the Journey (Grieving Quietly), which evidences the cyclical and complex paths nurses take during each patient or familial interaction. Positive or negative impacts were predicated by the accessibility or lack of internal and external resources and time. Conclusion: The proposed substantive theory of Navigating the Journey (Grieving Quietly) offers an insight into multiple microprocesses that occur when nurses enter conversations with the dying and the grieving. Further work is required to ensure that nurses have ready access to practical resources, meaningful education and supervision that will enable them to best succeed such journeys.

Health education interventions aimed at preventing female genital mutilation/cutting (FGM/C) have been implemented in numerous communities globally; however, the practice continues. This doctoral research aimed to explore health education interventions intended to prevent FGM/C locally and globally, in order to identify factors affecting their effectiveness and guide professionals caring for communities and patients/service users affected by FGM/C. A mixed method research methodology was used, underpinned theoretically by intersectionality. The research was undertaken in three phases. First, a systematic review examined the effectiveness of health education interventions designed to prevent FGM/C in affected communities globally. Second, a survey investigated the experiences and views of health professionals in Birmingham regarding the discussion of FGM/C with their patients/service users. Third, a generic qualitative study explored the experiences and views of individuals from communities with a history of FGM/C in Birmingham regarding health and wellbeing programmes/sessions (HWPs). Findings from the three phases uncovered several interrelated factors affecting the effectiveness of FGM/C health education interventions: 1) social structures (including factors relating to inclusivity, privilege checking, gender disparities and generational differences); 2) culture (comprising beliefs, attitudes, cultural competence and active communication); and 3) media contributions (incorporating the platforming of inequalities while also acknowledging disparities within media, such as the use of illustrations and language, e.g. type and utterance). All of these factors play an important role in determining the effectiveness of FGM/C health education interventions, and a Theory of Change (ToC) approach is used to illustrate the steps of implementing these interventions successfully. A novel 'Six Aspects of FGM/C Education' (SAFE) model was developed, informed by the factors identified from this research which affect the effectiveness of health education interventions. The SAFE model offers guidance to the design and implementation of effective FGM/C interventions.

The aim of this research is to explore the effectiveness of peer-led simulation on students learning. Simulation is a common pedagogical approach within the education of health professions. Whilst there has been a wealth of literature supporting the use of simulation and peer-led learning, there has been little reviewing of the long term benefits on student behaviours. Viewed through the lens of Wenger's Community of Practice (1998) and Vygotsky's (1978) more capable peer and using an Action Research approach, the concept of enabling students to design and facilitate their own simulations has been explored. Through cycles of action and reflection, the process evolved from students facilitating pre-written simulations through to student centric peer-led simulations. Over a period of seven years, students from child pre-registration programme participated in developing simulations. Interviews, focus groups, module evaluation and self-reflective diaries were used to generate data. Developing and facilitating their own simulations meant that students were able to improve their theoretical and practical skills and gained increased confidence and awareness of their own learning needs. The data from each of the cycles demonstrated that students had also gained levels of understanding about their role as a nurse that they could apply to other situations and their role as a teacher had facilitated their own learning. As a result of undertaking this Action Research project it is has been possible to view this pedagogical approach as effective in supporting students to develop both practical and theoretical skills.

Augmented Reality (AR) is a new technology that creates virtual extra layers on a physical object. It allows bringing digital information into the real environment by blending those two worlds. Interacting with digital content is a unique AR feature that offers new learning opportunities integrated with mobile applications. Smartphone devices can be utilised as AR tools to support interactive learning. Previous research has reported multiple benefits of using mobile AR as a learning tool, including enhancing content understanding, improving long-term memory retention, and increasing student motivation. There are several potentials for utilising AR in the context of nursing education, such as promoting independent learning and facilitating a student-centred learning approach. Comparing to traditional education, the increased use of blended learning in healthcare and nursing education requires students to take more responsibility for their learning. Thus students' independent learning skills have become increasingly important. However, there is a lack of studies focusing on AR technology and independent learning. This research addresses this gap, aiming to investigate the feasibility of utilising AR technology to facilitate independent learning of nursing students while acquiring clinical skills. In this research, a design science research methodology was adopted, consisting of three phases. The first phase - problem identification - reviewed the literature and undertook an exploratory study. The literature revealed that the ability of AR to allow students to be immersed in a realistic experience has attracted educators to use this creative way of learning. Indicating the ability of AR to replace traditional teaching methods, it does this by encouraging self-directed learning between students and supporting student-centred learning (SCL). In SCL, the teacher's role is as a facilitator who will enable students to learn independently and individually, while the learners are more responsible for their education. AR helps students to control their learning at their own pace and location. Moreover, the exploratory study investigated the current learning approach in terms of supporting independent learning, and 108 nursing students from The University of Salford answered an online questionnaire about their current learning. The results showed that the current learning environment is less supportive of independent learning due to many environmental obstacles, such as lack of feedback, accessibility issues, and lack of realism of manikins in clinical labs. The second phase - solution design - proposed a novel learning AR platform called Nursing Mobile Augmented Reality (NMAR), and the learning activities were designed based on self-regulated learning theory to overcome the current approach limitations. Learning with NMAR introduces a new learning strategy, aiming to enhance students' independent learning by adding 16 interactive self-assessment. Utilising NMAR allows students the freedom to discover the solution independently and activate their learning. Lastly, the third phase - evaluation - included an experimental lab study, where the NMAR learning environment was deployed to create an overall positive user experience which might motivate the students to be independent learners. A novel NMAR platform to support nursing students was used individually by 34 students at The University of Salford, and both quantitative and qualitative data were collected from the students via questionnaires, screen recordings and semi-structured interviews. The quantitative data were looked at the NMAR aspects, while the qualitative data explored the users' thoughts and perceptions about their experiences with NMAR. Evaluating the platform, understanding the users' perception and comparing the current and proposed learning approaches together provide a deeper insight into the comprehensive user experience. The quantitative findings showed statistically significant differences in perceived usefulness scores between the current and NMAR approaches. The qualitative findings confirmed that the NMAR platform facilitates the self-regulated learning process greater extent than does the current approach. Accordingly, the findings of this research revealed that the proposed NMAR learning approach positively enhanced the students' learning experience while acquiring clinical skills. The results confirmed that AR has a positive role in facilitating independent learning. Thus the research findings are expected to help nursing educators and policymakers to understand the feasibility of adopting AR technology in facilitating independent learning to support nursing education inside and outside the classroom. Furthermore, academia can use the proposed NMAR learning approach as relevant groundwork to initiate other related studies, which might help to fill the gap in the AR learning area.

Aim: This thesis explores resilience in nurse education from the perspective of student nurses. It is the first study to do so in the United Kingdom. Essential to exploring the lived experience of becoming resilient was to find out why resilience was needed for nursing? What aided resilience development, identify useful educational strategies and explore how this phenomenon was understood? Design: A qualitative case study with seven final year adult nursing students, using Interpretative Phenomenological Analysis (IPA). Findings: Participants articulated an overall process for becoming resilient made up of the following three parts. Experiencing the tests of resilience, utilising a resilience toolbox and reflexivity for resilience. The tests essential for resilience work were cited as the emotional labour of nursing, practice learning, academic failure, attrition, life events. It was clear that resilience development was highly individual. Simulation and reflection were named as the educational interventions useful for resilience building. A Resilience Framework was used to explain aspects of resilience development within this group. Implications for theory, practice and policy in nurse education: This thesis contributes to a theoretical understanding of the cognitive and mental activities that enable recovery from adversity in a new context. It adds new knowledge to educational theory with respect to how simulation aids resilience. On a practical level the findings have informed the development of new curricula and may influence nurse educational policy at a local and national level. There is utility in considering IPA for future nurse and health care professional research.

Background: Immunisation is the most significant intervention to influence global health, and is a proven tool for controlling and eliminating life threatening infectious diseases. Parental immunisation decision-making is influenced by many factors: location and access to services; relationships with health professionals; sources of information; social class; ethnicity; and other health care issues. Practice nurses have substantial contact with parents of young children requiring vaccination, and are a key group of health professionals involved in the UK national immunisation programme. Despite this, there is a lack of understanding pertaining to how practice nurses can influence parents' immunisation decision-making concerning the MMR vaccine. This study is designed to fill that gap. Aims: The three aims of this study were to: 1) conduct an integrative review to ascertain the beliefs and perceptions of practice nurses' influence about the uptake of the MMR vaccine; 2) explore the perceptions of practice nurses concerning their role and strategies used to promote MMR vaccine uptake; 3) explore how practice nurses engaged with parents during their consultations about the MMR vaccine. Design: The design of this three phase study consisted of an integrative review (Phase 1) and two exploratory descriptive qualitative designs (Phases 2 and 3). Method In Phase 1, data were analysed using integrative review processes. Convergent qualitative synthesis was used to draw the data together. During Phases 2 and 3, thirty practice nurses (principally practising in London) took part in semi-structured interviews that were audio recorded and transcribed verbatim. Qualitative content analysis was used to systematically manage, analyse, and identify themes. Findings: Phase 1 findings identified four themes: parental immunisation influencing factors, practice nurse characteristics, information and communication, and personal views and concerns. The integrative review provided an excellent baseline to ascertain the beliefs and perceptions of practice nurses' influence on the uptake of the MMR vaccine. However, the majority of the 12 articles were at least 10 years old and may not have reflected current practice nurses' views and perceptions. This led to the need for further research as identified in the Phase 2 and 3 studies. The findings of the Phase 2 study provided an understanding of how practice nurses perceived the most important aspects of their role in immunisation, and the strategies they implemented to promote the MMR vaccine. These strategies were wide ranging to include the provision of contemporary immunisation information to parents, and to dispel myths and misconceptions concerning the MMR vaccine. Practice nurses sought to explore parental health beliefs, endeavoured to understand the parents' perspective, and alerted parents to local outbreaks of measles. By effecting these strategies, practice nurses sought to inform parents and assist their MMR immunisation decision-making. Practice nurses in the Phase 3 study explored how they engaged with parents during their MMR consultations. They sought to provide parents with tailored sources of information to supplement their immunisation decision-making. Practice nurses described the need for a robust evidence base concerning the MMR vaccine, which they believed enabled them to address parental questions relating to vaccine content and side effects. Furthermore, practice nurses reassured parents who had safety concerns about the MMR vaccine, in so doing promoting this vaccine. Conclusion: The key findings in this study illustrate the ways in which practice nurses engage with parents to promote the uptake of the MMR vaccine. This demonstrates the leading role that practice nurses play in advocating for and promoting the uptake of the MMR vaccine.

Risk Assessment (RA) and Risk Management (RM) are fundamental processes in the delivery of safe and effective mental health care, yet studies have shown that service users are often not directly involved or are unaware that an assessment has taken place. Shared Decision-Making (SDM) in mental health systems is supported by research and advocated in policy. The primary aim of this programme of research was to identify the barriers and enablers to SDM in RA and RM,from the perspective of mental health professionals and service users. Study 1 synthesised the best available evidence on mental health professionals' experiences of SDM in RA and RM. The findings of this review indicate that SDM is not a concept commonly used in mental health services when exploring processes of RA and RM. The key barriers identified were 'power and best interest' and 'my professional role and responsibility'. Key enablers were 'therapeutic relationship' and 'value collaboration'. An exploratory sequential mixed-methods design and psychological theory were applied in study 2 (a qualitative interview study) and study 3 (a cross-sectional survey), which explored mental health professionals and service users' perceived barriers and enablers to SDM in RA and RM. The findings show that stakeholders are motivated to work collaboratively but experience a complex range of social, cultural, and environmental factors that influence theiropportunity and capability to achieve SDM in RA and RM. The findings of this thesis can be used to develop targeted interventions aiming to increase SDM in RA and RM. However, further empirical work is needed to validate these findings and determine the acceptability and feasibility of an intervention with key stakeholders.

Young onset dementia (YOD) is a contemporary phenomenon and refers to people under the age of 65 with dementia. There are currently 44,000 people living with YOD in the UK and rates are projected to continue rising. Specialist age-appropriate services for people with YOD are scarce, although it is known that they have different needs due to their age and life stage. YOD affects the whole family unit and it is this aspect that the current research focuses on. The research question posed was: 'What is the impact of young onset dementia on the family?' The study applied a qualitative thematic analysis using Framework to systematically analysis the data collected from a convenience sample of families recruited from dementia cafes. Data were collected through semi-structured interviews with the family unit and individual participants. A total of six families, comprising of 16 participants in total, were recruited. The data generated were analysed to identify three main themes, namely: the Uncertain World; the Changing World; and the Shrinking World. These themes informed the development of a 'three stage model of the subjective experience of families living with young onset dementia'. The model highlights the optimum stage for families to change and adapt promoting and extending the time they live well with dementia.

Chapter one is a systematic literature review of qualitative studies investigating palliative care (PC) nurses' experiences of stress, anxiety and burnout. Literature searches identified 18 studies for inclusion and thematic synthesis identified three main themes: When work becomes personal, The burden on mind and body, and Finding meaning and connection. Nurses' experiences of stress, anxiety, and burnout are experienced on an emotional and physical level, influenced by organisational and individual factors. Clinical policy and practice implications, as well as future research recommendations, are discussed. Chapter two is an empirical study exploring the lived experience of clinical psychologists supporting medical staff treating Covid-19 patients. Ten clinical psychologists were interviewed, and interpretative phenomenological analysis resulted in three superordinate themes: Re-affirming professional identity, Navigating change and uncertainty, and "Can I go back to my day job?". Participants described how their professional identities were impacted, their experiences of navigating uncertainty at home and work, and their difficulties in balancing the demands of their personal and professional lives. Chapter three is a reflective paper describing the researchers' experience of undertaking doctoral research. This chapter explores the themes Learning to trust myself and Balancing the different parts of me, and uses concepts and related ideas from Acceptance and Commitment Therapy (ACT).

The nursing labour market in England is characterised by both skill and labour imbalances, which are attributable to a variety of factors. Overall, an increasing demand for service care is being confronted with labour shortages. These shortages and the associated difficulties with workforce planning are further magnified by reported high turnover and dissatisfaction among the nursing profession. This thesis focuses on the behaviour of individual actors in the labour market for nursing and explores the decision-making behaviour of these actors at different phases of career progression. A major concern is the nature of both supply and turnover of nurses within the NHS, and the extent to which this can be modelled, through econometric means, in sufficient detail with due regard for qualitative aspects of supply. Through mixed methods approaches, the research examines why individuals decide to study nursing at degree level; the factors that motivate an individual to register and practice as a nurse; and the factors that influence turnover and intent to leave a job role or the profession. In contrast to previous research, efforts were made to understand how this behaviour differs between single, co-habiting and married nursing-qualified individuals. It is concluded that the motivations behind the decision-making behaviour of actors are complex. New entrants into the market feel that there is a misalignment of expectations, which stem from training and placement programmes. Current nurse employees present a picture of unmanageable workloads due to increased administration, work-related stress, and poor working conditions resulting from staff and skill shortages. These have, in turn, exacerbated the initial shortages, though the situations vary greatly across time, space and speciality. Additional influencing factors are reductions in training budgets and international recruitment. It is shown that a tendency towards adopting a 'one size fits all' policy approach, where different nursing staff are treated more or less the same, is unsustainable. The implications for future policy are that it must be based on a much more differentiated approach and underpinned by a stronger research base.

In healthy individuals, coronary arteries dilate in response to sympathetic nervous system (SNS) stimulation, whereas in patients with increased cardiovascular disease (CVD) risk this produces a truncated dilation. Conversely, in patients with significant disease, these arteries constrict. Previous research has demonstrated a correlation between carotid and coronary artery function. In addition, a non-invasive measure of carotid artery response (CAR%) has been shown to predict adverse events in patients with peripheral arterial disease. In this thesis, these findings were extended to investigate the effect of blood pressure (BP) increase caused by the Cold Pressor Test (CPT) as a driver of CAR%. CAR% was then also investigated as a means to predict risk in patients with central arterial disease undergoing Coronary Artery Bypass Graft (CABG) surgery. Methods. The (CPT), a sympathetic nervous system stimulus (SNS) using cold water, was used to investigate carotid artery response to an SNS stimulus in two studies. The first investigated CPT alongside continuous blood pressure measurement. The second examined CAR% in patients with CVD undergoing CABG, with a 30-day follow-up period. Results. Study one: The timing of peak CAR% was significantly later than peak MAP. There was no significant difference in CAR% when participants are separated by MAP response. There was no significant difference in MAP in "dilation" vs "constriction" groups. Study two: There was a weak inverse correlation between CAR% and EuroSCORE II. Neither EuroSCORE II nor CAR% alone predicted risk. There may be a trend towards a marginal improvement in predictive capacity when CAR% is combined with EuroSCORE II. Although this did not predict risk. Discussion. Study one: This study provided evidence that CAR% is not significantly driven by increase in MAP throughout the CPT. In addition, it further supports the validity of CAR% as a surrogate of endothelial function. Study two: Alone, neither EuroSCORE II nor CAR% were predictors of risk. Combined, the two measures demonstrated marginal increased predictive capacity. This study suggests that CAR% may improve the predictive capacity of established prediction tools. This cannot be tested conclusively due to the low number of adverse events. Future Work: This thesis highlighted future areas for research including regulation of CAR%, areas for further technological and practical development and areas of potential clinical integration, namely in the identification and monitoring of endothelial function alongside interventions to improve function and reduce perioperative risk.

With an estimated worldwide cost over $1 trillion just for dementia, diseases of the central nervous system pose a major problem to health and healthcare systems, with significant socio-economic implications for sufferers and society at large. In the last two decades, numerous strategies and technologies have been developed and adapted to achieve drug penetration into the brain, evolving alongside our understanding of the physiological barriers between the brain and surrounding tissues. The blood brain barrier (BBB) has been described as the major barrier for drug delivery to the brain (1). In this project, novel enzyme-responsive self-assembled peptide nanoparticles were developed for drug delivery to the brain. An enzyme, matrix metalloproteinase (MMP)-9, is crucial in the pathogenesis of neurodegenerative diseases has been targeted for our studies due to it's overexpression in neurodegenerative diseases and also due to it's function as a protease, allowing selective release of drug cargo in the brain of ND patients. Firstly, state of the art statistical and molecular modelling was used to predict the best substrate for MMP 9 by assigning a Y-score. These predictions were tested by employing novel fluorine (19F) NMR spectroscopy. Novel MMP-9 sequences were identified, especially TY-26, that are better than those in previously reported studies. Secondly, novel enzyme-responsive self assembled peptide nanoparticles were successfully synthesized with different combinations of MMP-9 sensitive and brain-targeting ligands. Most of the formulations self-assembled without sonication to form nanoparticles of 41-200 nm diameter with a zeta potential/ surface charge of 2-48 mV. The critical micelle concentration for all the self- assembled peptide nanoparticles calculated were around 7-110 mg/L. The encapsulation capacity ranged from 40-80%. TY-28, TY-39 and TY-44 were among the highest encapsulation capacity nano formulations. Nanoparticles formulations were found to be MMP-9 sensitive and all formulations exhibited different release patterns of a model drug in the presence of external xvii stimuli. Novel enzyme-responsive self-assembled peptide nanoparticles were found to be least cytotoxic at lower concentration, however at higher concentration they were found to be cytotoxic, showing a range of cell viabilities. In vitro uptake of enzyme-responsive self-assembled peptide nanoparticles was confirmed by confocal microscopy and flow cytometry. Enzyme-responsive self-assembled peptide nanoparticles showed up to 40-70% permeability when investigated by in vitro hCMEC/D3 blood-brain barrier model in healthy (50 ng) and diseased (100 ng) conditions. In vivo studies suggested that the enzyme-responsive self-assembled peptide nanoparticles managed to get into the brain of mice. Although in full body scans, no significant signal was observed, ex vivo experiments showed that enzyme-responsive self-assembled nanoparticles managed to permeate into the brain. These enzyme-responsive self-assembled peptide nanoparticles can be used to deliver drug molecules such as siRNA into brain.

This thesis comprises a mixed-methods study aimed at exploring whether an Alexander Technique intervention would enable participants aged 60 years and over to improve their balance and movement, thereby increasing balance confidence and reducing fear of falling. Frequency of delivery was explored for effect on the outcomes, experience and learning of the participants. Participants' feedback on Alexander Technique learning and the intervention encompassed: group learning; course content; and views on the usefulness of Alexander Technique in daily life. Two groups of participants were recruited from Extra Care sheltered housing schemes (once-a- week intervention, n=13; twice-a-week intervention, n=16). Quantitative assessments of balance confidence (practical assessment) and fear of falling (operationalised as falls-related self-efficacy, self-report) were carried out twice before the intervention (control period); immediately post-intervention; and at four-weeks post-intervention. Qualitative data was obtained by focus groups and individual interviews. The intervention comprised eight sessions of Alexander Technique instruction provided by qualified Alexander teachers, delivered using explanation, demonstration and observation only. Quantitative data (n=17) indicated an increase in balance confidence (significance inconclusive) and no change in fear of falling. Qualitative data provided evidence of increased activity levels commensurate with increased balance confidence. Fear of falling continued to be expressed, however, its effects appeared to be reduced, with implications for quality of life. This research demonstrated that older adults were willing to embrace and apply Alexander Technique, perceived as relevant to their daily lives and continuing independence. Application of learning within and outside the course sessions enabled participants to bring about improvements in balance and movement to meet their individual needs. Group learning was enjoyed and confirmed as successful for this age group. The study demonstrated that Alexander Technique is an appropriate intervention for older adults with fear of falling. Participants also recommended Alexander Technique learning for adults at a younger age.

This contextual statement is focussed on nursing in clinical practice and higher education encapsulated in a selected body of published work, illustrating a career of over thirty years. This journey spans a political and policy context that includes the expansion of higher education in the 1970s, the closure of the Victorian psychiatric hospitals in the 1990's, the move of nursing from apprentice-style training into higher education in 1995, and the partial decoupling of nurse education from the NHS. Drawing on theories of liminality and Michael Lipsky's Street Level Bureaucracy, the statement proposes innovative approaches to raising the profile of nursing, beyond a liminal position. The public works are produced from liminal spaces in clinical practice to the liminal space occupied by nursing in higher education. Whilst accepting the essence of nursing as a caring profession, the statement suggests how societal views about nursing are stereotyped and heavily influenced by the position of women generally. This is compounded by the reluctance of feminism to embrace nursing, and nostalgic views about the profession portrayed in the media and articulated at all levels, including in government. The works indicate how this has contributed to nursing occupying a liminal space in higher education. Focussing on nursing at the margins of society, early papers cover the period of deinstitutionalisation from the large psychiatric hospitals. Further papers focus on influencing the education, identity, and values of nurses, including how the rise of service user involvement can transform curricula. Later papers consider the views and experiences of nurse academics and students about professional identity and how this is expressed in learning and teaching; with insight into how identity and values are shaped by both clinical and educational experiences. The liminal experience of nursing in higher education is explored, alongside the dual identity experienced by nurses who move from clinical practice to the academy. The final group of papers examine the place of work-based learning in higher education, with the paradoxical discovery that although learning in healthcare is abundant, identifying learning opportunities can be elusive. Produced on the margins of clinical and academic practice, the works illuminate hidden areas that are not sufficiently valued. The statement and works provide a platform to raise the position and profile of nursing overall.

Background: This inquiry explores the career stories of nurses, to establish what influences their career decisions. The Nursing and Midwifery Council has over half a million nurses on its register, mostly employed within the National Health Service. There are increasing opportunities within this varied and extensive profession for fulfilling careers, yet many nurses leave the profession early. Research aims: This inquiry aimed to provide evidence about the influences on nurses' career decisions. It will establish an evidence-base for those who endeavour to assist nurses' career progression. Methods: A narrative review into existing literature concerning nursing careers was undertaken. This demonstrated careers are much researched and there is a significant theoretical basis, but careers in nursing are a novel area of research. Ethics approval was granted for a narrative inquiry amongst twenty experienced London nurses and ex-nurses. Semi-structured interviews were conducted to elicit their career stories. Three nurse managers and three nurse educators also participated. The emerging ideas were tested with a survey, sent to all participants. Analysis: From the transcripts of the interviews, the career stories of the nurse and ex-nurse participants were derived. These were coded and the codes grouped to form narratives. Some of these were tested using an online survey of participants. Results: Multiple complex challenges, priorities, and fears were revealed which influence nurses' career decisions. These are presented as five narratives. The most important of these to nurses is relationships. These have been overlooked in much career research, yet this inquiry showed relationships at work, especially with other nurses, are a source of enjoyment and discourage career moves. The other narratives are job satisfaction, finding the right job, stress, and work-life balance. Conclusion: The nursing career structure can be obscure and information difficult to obtain. Relationships at work are an important source of guidance as well as being enjoyable. This thesis concludes by proposing a graphic and two tools. The graphic depicts the five narratives and could aid nurses to visualise their sources of career fulfilment. The first tool is for nurses to reflect upon their careers and the second helps managers evaluate nursing posts and may be particularly useful if a post is likely to be difficult to fill.

An ageing population and the rising costs associated with end of life care have led to increased scrutiny of the economic decision-making processes at the end of life. Critics argue that the normative framework that underpins the economic evaluation of health care interventions may be inappropriate for evaluating end of life care interventions. A broader evaluative space, that goes beyond health to capture the wider benefits of end of life interventions may provide a more appropriate basis for evaluating end of life care. One option for operationalising this broader evaluative space is the use of the ICECAP-SCM which is a self-complete tool for evaluating health and wellbeing at the end of life. There is, however, little evidence about its use in patients near the end of life. This thesis reports a PhD study that aimed to determine the feasibility of using the ICECAP-SCM alongside the more traditionally used EQ-5D-5L, and the ICECAP-A in patients with end stage organ failure. The thesis also aims to explore the impact of functional decline on health and broader aspects of wellbeing. This is the first study to investigate how the three tools measure quality of life in end stage organ failure, and explore the impact of decline on wellbeing using the three measures. A systematic review of the literature showed that there is insufficient evidence on the feasibility of using measures suitable for economic decision making in evaluating end of life care interventions. Qualitative methods such as cognitive interviews were useful in providing a better understanding of the way measures were understood and completed by respondents, and issues that can affect their use. The feasibility of using the ICECAP-SCM is explored through think-aloud interviews. Sixty patients with end stage heart failure, end stage renal failure and end stage COPD participated in the research. Interview transcripts were examined for errors in comprehension, retrieval, judgement and response. The constant comparative method was used to analyse qualitative data providing an in-depth insight into measure completion. Qualitative thematic analysis further explored the impact of functional decline on health and capability wellbeing. Error rates were low across all three measures and differences in error rates between the measures were small. The measures were acceptable, clear and easy to complete. The impact of terminal illness on health and capability wellbeing, and the extent to which participants were able to cope and adapt to the effects of their condition varied across the groups. The ICECCAP-SCM is feasible to use with patients with end stage organ failure receiving care in different settings. Future research should consider exploring the feasibility of using the ICECAP-SCM in patients on other dying trajectories such as the frailty trajectory where patients are likely to receive care in nursing homes. The findings provide an opportunity to researchers and policy makers interested in the use of a measure suitable for economic decision making which captures the wider benefits of end of life interventions and services.

Background: Worldwide it is estimated that over 50 million people are living with dementia but that up to 50% of people in high income countries and 95% of people in low and middle income countries have not received a formal diagnosis. There is an international drive to increase the number of people receiving a formal dementia diagnosis and for them to receive this diagnosis early in the disease process. In the UK around two thirds of people living with dementia have a formal diagnosis and initiatives in primary and secondary care have been aimed at increasing formal diagnosis rates. Research on the pathway to a dementia diagnosis reveals a complex, often lengthy process, in which a person with symptoms of dementia and their family make sense of what is happening and decide to seek help. However much less is known about the people who do not seek help and may remain without a formal diagnosis. Aim: The overall aim of this study was to understand why people may not seek help for a diagnosis of dementia. This involved exploring the characteristics and experiences of a group of people who were not actively seeking help, but were identified to have undiagnosed dementia, following emergency admission to an acute hospital with a physical health problem. Methods: This mixed methods study, set within a critical realist framework, had four phases - 1) a systematic review of 32 studies of the barriers and facilitators to help seeking for a dementia diagnosis from the perspective of carers and people living with dementia; 2) semi-structured interviews with 12 carers of people diagnosed with dementia during or following an acute hospital admission in the greater London area; 3) a retrospective cohort analysis of 1830 people referred to a memory clinic in inner London and; 4) an integration of findings from the first three phases. Findings: The systematic review identified ten barrier themes and three facilitator themes. Multiple barriers compounded the delay to diagnosis and more than one facilitator was often required for help seeking to take place. An analysis of interviews with 12 carers of people diagnosed with dementia following an acute hospital admission, illustrated how carers created a 'bubble of normalisation' around themselves and the person living with dementia, to construct explanations that rejected a label of dementia and protect the person living with dementia from a loss of independence, discrimination and prejudice. There were missed opportunities to initiate help seeking and carers were fearful of talking about dementia. The diagnosis burst their bubble and left many feeling unsupported, still unable to talk about dementia and questioning the value of the diagnosis. Analysis of referrals to a memory clinic revealed that people referred to the memory clinic by the acute hospital (people considered not to be actively seeking help for a diagnosis), were significantly more likely to be older and of white ethnicity than people referred by their GP. People diagnosed with dementia following referral from the acute hospital were more likely to have severe dementia, more likely to have died 12 months post referral and more likely to have had hospital admissions before and after referral. People referred by their GP were more likely to be diagnosed with cognitive impairment or be cognitively intact following their assessment. In phase four the integration of data from the first three study phases resulted in five integrated themes: Fear of the label of dementia, alternative explanations, preserving autonomy, independence and the way of life, the potential of informal networks and the role of health care professionals. Following a process of abduction and retroduction a model depicting three social structures and generative mechanisms which had the power to prevent help seeking for a dementia diagnosis was presented. The model proposed that stigma related to dementia and the threat this posed to independence and autonomy could prevent help seeking when the carer's social network ties shared these views and the carer was unable to share their concerns with others. Conclusion: This study provides a unique contribution to the research on the pathway to a dementia diagnosis as it explores the experiences of a group of people who were not actively seeking help for a diagnosis. The study highlights the role stigma plays in preventing help seeking and the importance of the social network as a mediating factor with the power to prevent or facilitate help seeking. These findings suggest that if a formal diagnosis early in the disease process is to be beneficial, the broader societal response to people living with dementia needs to be positive and inclusive, lending support to the growing focus on dementia friendly communities and a social citizenship approach to dementia care and support. The difficulties carers experienced in talking about dementia should be considered as an important opportunity for interventions that encourage and support open communication within social networks about dementia.

Life expectancy has increased to a record-high and, death has become more common in hospital settings than at home, reducing the experiences of death and dying in the community. The concept of public health palliative care combines two disciplines, one concerned with individual end of life care and, the other concerned with death and dying as a health issue at a population level. The emergence of public health approaches within palliative and end of life care has gained momentum, in particular compassionate communities as one of the components of the concept. However, there is limited evidence of how compassionate communities are being implemented. This thesis explores and extends the understanding of compassionate communities approaches in the UK. A qualitative case-study design includes three different research sites providing palliative care provisions, two are hospices and one is a community organisation. The main data collection methods include semi-structured interviews and focus groups with: people at end life (primary participants), family members, friends, volunteer befrienders and, health professionals. Although, there are differences in the compassionate communities approaches across all three sites as defined by research participants this thesis has identified shared characteristics. The first characteristic is home as the preferred place of care with physical, social and psychological symbolic meanings; second of formal and informal care interface within and across inner and outer circles of care; third is the essential role of volunteer befriender within the inner circle of care strengthens the interface between formal and informal care. The relational aspect of and between formal and informal care is considered to be important. This thesis frames a compassionate communities approach within the theoretical framework of a therapeutic landscape, extending the understanding of a compassionate communities.

This thesis focuses on nurses and their experience of violence and aggression and perceptions of containment measures. Chapter one includes a meta-ethnographic review of qualitative research concerning general nurses' experiences of violence and aggression in the emergency department. Four meta-themes are identified and mapped onto Bronfenbrenner's (1979) ecological model to illustrate the complex relationship between nurses, their aggressors, and the interconnected societal factors perpetuating this relationship. Clinical implications and areas of potential intervention are discussed. Chapter two details an empirical qualitative study capturing the perceptions that student mental health nurses (SMHNs) have about control and restraint (C&R). These interventions can be used in acute and secure mental health settings as a last resort to manage challenging situations. The interventions are known to be (re)-traumatising for all involved and cause internal conflicts for nurses who employ them. Currently SMHNs are somewhat protected from this reality as they are not trained fully in this process. Using an applied thematic analysis approach, 15 SMHNs were interviewed. Three distinct codebooks were identified, specifically highlighting 1) the Context in which SMHNs develop an understanding of C&R, how that relates to their career trajectory and the consolidation of their personal and professional identities, 2) perceived Moral Dilemma of engaging in C&R, and 3) perceptions of The Aftermath of engaging in C&R as a nurse. Recommendations for future practice are highlighted. Chapter three is a reflective account (using Acceptance and Commitment Therapy [ACT] principles) of the research process undertaken to complete the presented thesis. It explores the lessons learnt as a practitioner, researcher, and individual.

Introduction At the dawn of the 21st century, ageing populations combined with rising numbers of people with chronic conditions are placing burdens on patients, carers, professionals, and health systems worldwide. Digital health interventions (DHIs) such as mobile, online, wearable and sensor technologies are being used to promote healthy lifestyles and encourage self-management of disease in an effort to address some of these global health challenges. However, these kinds of electronic tools can be difficult to implement. Engaging patients, the public and health professionals in digital health and getting them signed up to these technologies can be challenging in real-world settings. Aim The primary aim of this thesis is to examine the barriers and facilitators affecting engagement and enrolment in consumer digital health interventions. It examines these complex processes from the perspective of three key stakeholder groups: 1) patients and the public; 2) health professionals; and 3) those implementing the technologies. The secondary aim is to identify the strategies used to engage and enrol individuals in consumer DHIs. Methods An exploratory, multi-method qualitative study design was adopted. This included a qualitative systematic review and collection and analysis of primary and secondary qualitative data, gathered as part of a large (£37 million) digital health innovation programme called Delivering Assisted Living Lifestyles at Scale (dallas). The dallas programme deployed a wide range of digital health products and services in the United Kingdom ranging from telehealth and telecare systems through to mobile health applications, personal electronic medical records, and online health and wellbeing portals. These were deployed among patients with chronic illness and healthy people providing an ideal opportunity to study engagement and enrolment in DHIs. The systematic review explored the experiences of patients and the public when engaging with or signing up to DHIs. Primary data collection during the dallas programme consisted of fourteen interviews and five focus groups with patients, carers, clinicians, and those implementing the various technologies. Secondary analysis was undertaken of forty-seven baseline, midpoint, and endpoint interviews with stakeholders implementing the DHIs during the dallas programme. All analyses followed the framework approach to identify key themes and subthemes. This was underpinned by Normalization Process Theory (NPT) to synthesise the findings and develop a conceptual model of digital health engagement and enrolment. Findings A wide range of factors affected engagement and enrolment in DHIs for the three stakeholder groups. Where patients or the public were concerned, four themes emerged from the systematic review. These were; 1) personal agency and motivation, 2) personal lifestyle and values, 3) engagement and enrolment approach, and 4) quality of the DHI. A preliminary Digital Health Engagement Model (DIEGO) was developed along with an initial catalogue of engagement and enrolment strategies. The results of the dallas programme expanded on the barriers and facilitators influencing patient and public engagement and enrolment in digital health. The main themes that arose were; 1) personal perceptions and agency, 2) personal lifestyle and values, 3) digital accessibility, 4) implementation strategy, and 5) quality of the DHI. For health professionals, three overarching themes came to light; health professional role, health service organisation and culture, and digital infrastructure. Those implementing digital health products and services were slightly different as two main themes, each of which has several subthemes, appeared to affect engagement and enrolment in DHIs. These were organisation of engagement and enrolment, and implementation strategy. Hence, the conceptual model highlighting key issues affecting patient and public engagement and enrolling in DHIs was refined and developed further based on the findings from the dallas programme. In addition, the initial catalogue of engagement and enrolment strategies was extended. Conclusion This thesis provides new insights into the digital health implementation process, in particular the early phases of engagement and enrolment. A preliminary conceptual framework of digital health engagement and enrolment, the DIEGO model, was developed which summarises key issues that need to be considered during the earliest stages of implementing digital health products and services. This new framework could help researchers, clinicians, businesses, and policy makers appreciate the dynamics of deploying digital interventions in healthcare. This work suggests that educating patients, the public, and health professionals about the benefits, risks, and limitations of health technology is needed, while supporting research that describes engagement and enrolment strategies for consumer digital health and examines their effectiveness. Implementation teams could benefit from building strategic partnerships with marketing specialists and third sector agencies, and having clear business plans and budgets to enhance the reach and impact of engagement and enrolment in digital health. A positive digital health culture also needs to be cultivated in the health service, with leaders that champion the appropriate use of technology. National policies and funding that supports health informatics education, digital literacy for citizens, and digital infrastructure may also be necessary to enable people to sign up for DHIs. These recommendations may help support implementation and improve uptake to digital health products and services in the future.

Introduction Multiple Sclerosis (MS) is an unpredictable progressive neurological condition that has a profound impact on the ability of people to engage and participation in occupations from onset which often occurs in early adulthood. At this stage of life Instrumental Activities of Daily Living (IADL), based in domestic and community contexts, constitute a complex and demanding group of occupations that contribute to occupational identity. Occupational therapy interventions have a complex role in enabling people with MS to engage and participate in purposeful and meaningful occupations such as IADL. Adopting a person-centred theoretical lens, the study reported in this thesis explored the experiences and perceptions of IADL and the occupational therapy interventions of five people with multiple sclerosis in the practice context of a community neurology team. Methods The research design consisted of a multiple case study incorporating mixed methods to collect predominantly qualitative data. A novel methodological approach adopted a world view influenced by pragmatism and critical realism. The Assessment of Motor and Process Skills (AMPS) providing case attributes that measured occupational performance in IADL. Semi-structured interviews were then conducted with the people with MS, their carers, occupational therapist, and other healthcare professionals. A questionnaire was also administered to the occupational therapists. The framework approach was applied to analyse the data systematically and robustly. Computer assisted qualitative data analysis software (NVivo) was used to manage data. Presentation of the framework analysis was supplemented by case summaries illuminating the narratives of the five people with MS. Findings Four core concepts were identified. The Person Living with MS represented the understanding of the impact of MS on occupational performance in IADL. The Occupations core concept demonstrated the variety of IADL participation and linkage to other groups of occupations. Occupational Therapy Interventions for People with MS revealed professional reasoning and featured fatigue management strategies, environmental interventions, and psychological interventions. The social context of Inter-relationships with other significant people and the MDT to support and enhance occupational performance was also identified. Development of a therapeutic partnership, that listens to and respects the diagnostic narrative of the person with MS, enables personalised interventions to support and empower participation in IADL and other occupations. The contemporary MS person-centred occupational therapy (MS-PcOT) practice model was constructed as a synthesis of the findings. Conclusion Occupational therapy interventions have a multi-faceted role in enabling people with MS to participate in occupations they want, need, and expect to do. The findings contribute new knowledge of professional reasoning in occupational therapy practice for people with MS. The findings also contribute to the understanding of experiences and perception of occupations in the domestic lives of people with MS. The MS-PcOT practice model is a person-centred and occupation based guide for occupational therapy practice. The model incorporates integrated and coordinated interdisciplinary practice to support people with MS in their daily occupations and maintain health and well-being.

Since the end of the 2014 West Africa Ebola epidemic there has been a call for countries to recognise the role frameworks of resilience can play in health system development, particularly in low resourced settings. This thesis will use the findings from five papers in two related studies to examine and critique frameworks of resilience in relation to the health system in Sierra Leone. Study one addressed the quality of pre-registration education for maternal and child health aides and study two examined the impact of the Ebola epidemic on maternal and newborn care. Findings from the included papers are utilised to explore how theories of human and social capital may be utilised to examine concepts of resilience in relation to the health system in sierra Leone. The framing of resilience among health care workers and pre-registration tutors; the current capacities and characteristics of health care workers and their relationship to the human capital requirements of resilience frameworks will also be explored. Findings from this thesis demonstrate that discussion on human capital for developing resilient systems is largely missing from the resilience agenda. Elements of everyday resilience may be evident amongst health care workers and tutors, but this has not led to system adaption and transformation. In a fragile state such as Sierra Leone there is a danger that focusing on resilience alone will mask the investments that are needed in human capital and the political and social changes needed to improve health care. In the context of Sierra Leone concepts of resilience need to be reframed to acknowledge the cultural context, and recognise the underlying fragility of the state and lack of agency amongst the majority of the health care work force. Investment in human capital should therefore be included as a pre-condition in resilience frameworks which can then be built upon to bring about universal health coverage and system resilience.

Practices during the third stage of labour are likely to be influenced by a range of factors, not just findings from studies. Also, little is known regarding the incidence of and treatment for postpartum haemorrhage (PPH) in women giving birth solely in midwife-led units or what factors midwives feel influence their use of third stage management approaches in this birth setting. Therefore, a research project (using a multi-method research design) exploring third stage of labour management approaches and incidents of PPH, as well as the acceptability and practicability of third stage approaches for women, giving birth in midwife-led units was conducted. This consisted of a quantitative and qualitative study. Findings from the studies revealed a statistically significant increase in the incidence of PPH (defined as blood loss 500 mL or over) with expectant compared to active management. There was also a statistically non-significant incidence in the relationship between third stage management approaches and incidence of severe PPH (defined as blood loss of more than 1000 mL). Also, although more women who initially received expectant management needed treatment for excessive bleeding, once these women received this first-line treatment their need for further treatment, to manage continual bleeding was slightly reduced. This is compared to women who initially received active management and experienced a PPH. Additionally, from interviews with midwives four themes were developed capturing midwives' understanding of the factors they felt influenced their use of third stage management approaches in midwife-led units. It was evident that tensions were present within and between these themes and midwives need to balance these tensions when trying to provide woman-centred care. The themes generated from these interviews need to be addressed to facilitate third stage of labour management approaches. This is because this research project, with support from other studies, found that expectant management was a reasonable option for women at low risk of PPH, who wanted to labour and birth with minimal intervention in a midwife-led unit.

Background: Poor sleep quality is common in ICU patients, where various sleep disruptive factors are associated with poor sleep in ICUs. Sleep assessment on a daily basis in ICU patients is challenging important to enable nurses to recognise poor sleep and develop appropriate interventions and support to manage this. One such tool recommended in recent literature for undertaking daily sleep assessment is the Richards Campbell Sleep Questionnaire (RCSQ). However, there is little evidence of its feasibility and acceptability in daily use in ICU clinical practice and no evidence of its use in Arab speaking countries. Furthermore, data about patients' sleep quality and sleep disruptive factors in ICUs in Arabic speaking countries, particularly Saudi Arabia is limited. Aim: The aim of the study reported on in this thesis was to develop and test the psychometric properties, and feasibility and acceptability of daily self-report assessment of sleep quality in an ICU setting in Saudi Arabia using an Arabic version of the RCSQ (the RCSQ-A). The study also aimed to report on sleep quality and sleep disruptive factors among ICU patients in Saudi Arabia. Design and methods: The study was carried out in Saudi Arabia in a mixed medical and surgical ICU using a two-phase design. The first phase involved two steps: in the first step, the RCSQ was translated into Arabic, while the second step involved testing the internal consistency and reliability of the RCSQ-A in an initial pilot sample of 57 ICU patients. Content validity was also examined in a subsample of 30 ICU patients using a cognitive interviewing method. The second phase was a prospective observational repeated measures study carried out over a three-month period. In this phase, 120 ICU patients were asked to rate their previous night's sleep quality on a daily basis using RCSQ-A alongside a self-report of sleep disruptive factors using the modified Sleep in Intensive Care Questionnaire (SICQ) until their discharge from the ICU. Data regarding the feasibility and acceptability of repeated measurement using the RCSQ-A were collected. The correlations between self-reported sleep disruptive factors, patients' demographic and clinical variables, and patients' self-reported sleep quality were assessed. Results: The Arabic version of the RCSQ (RCSQ-A) showed evidence of content validity and internal consistency with a Cronbach’s alpha of 0.89 for self-report sleep quality assessment in an Arabic ICU patients. The RCSQ-A was shown to be feasible and acceptable to the ICU patients for daily self-report sleep assessment with self-completion requires external assistance to complete RCSQA. Sleep quality in the participants was generally poor; their sleep patterns were characterised by light sleep with frequent awakenings. Factors disrupting sleep were multiple and highly varied. Nevertheless, noise, talking and fear, were the highest-rated disruptive factors. In the multiple regression analysis , factors which significantly associated with patient sleep [exp(b), p-value] were previously receipt of Midazolam [-6.424, p<0.0005] and Propofol sedation [-3.600, p<0.05], noise [-1.033, p<0.05], daytime sleepiness [0.856 p<0.05], the presence of mechanical-ventilation [-1.218, p<0.05], and sex differences [1.836, p<0.05]. Conclusion: The results from this study highlight that the RCSQ-A is a feasible and acceptable measure for daily routine use for self-report sleep assessment in Saudi ICU clinical practice. Further research would be useful to contribute to the growing body of research addressing its effectiveness in middle eastern populations. The results highlight the importance of routinely inquiring about ICU patients' sleep quality and identifying individual sleep disruptive factors to develop individualised interventions to meet patient needs. This thesis can thus be viewed as a solid foundation for further research, which is required to strengthen, expand on, and confirm the findings contained herein.

Background: Prostate cancer is the fourth leading cause of cancer deaths among Thai elderly men. Elderly patients face a unique set of age-associated changes, comorbidities, and circumstances that impact on health and QoL in ways that are different from those of younger patients. In Thailand, there are shortage of specialist cancer centres across the region. Additionally, there is a lack of the evidence regarding patient’s health and QoL and the impact of cancer has on them and their families. Research is required to explore the experience of living with cancer from the perspective of patients and significant others. This will help facilitate effective treatments and provide the potential for holistic care to maintain and improve health and QoL of elderly patients and those who care of them. Aim: The aim of this study was to understand the experiences of living with prostate cancer of Thai elderly patients and their significant others. Methods: An explanatory sequential design was adopted in two sequential phases. Phase 1: patients age 60 and over (n=125) who were diagnosed with any stage of prostate cancer from two health care centres, were consented and completed the validated questionnaires EORTC QLQ-C30 and EORTC QLQ-PR25. Phase 2: semi-structured interviews were conducted on 18 pairs of patients and their significant others from Phase 1 who agreed to take part in the 2nd Phase to understand the impact on health and QoL of the three age categories of elderly patients and their experiences of living with prostate cancer from the perspective of Thai patients and their significant others. Results: Elderly Thai patients experienced alterations to their role functioning, physical functioning, cognitive functioning, sexual functioning, and fatigue. Patients in old-old age lower scores of QoL than younger groups, and that differences in the scores between the three age groups had high statistical significance (p<0.001). Patients who underwent hormonal therapy only, had better global health status, social functioning, and less pain than other groups (p<0.05). Patients who had undergone chemotherapy treatment had deteriorated social functioning (p<0.05). Having a combination of surgery and hormonal therapy had poor health, more pain (p<0.05) and more incontinence (p<0.001). In terms of comorbidities Hypertension was a variable of major concern for Thai patients in all age groups and had a more negative effect in old-old age than in other groups. This study found health, social functioning, physical functioning, role functioning, cognitive functioning, and sexual functioning had great influenced on QoL among patients in three age groups (p<0.001). Findings from the interviews identified four similar themes that emerged from both patients and significant others: decision making for treatment; healthcare experience; faith and beliefs; emotion. The broad differences in the themes that emerged from the patients and significant others included effect on physical functioning, symptom and side effect of treatment, family, and social relationships, being a good carer, and worry and anxiety. Conclusion: Elderly prostate cancer patients in young-old age were more likely to have better health and QoL in most functioning than middle-old age and old-old age. Better communication through the prostate cancer journey are needed for patients and significant others, as they were more likely to seek alternative ways outside the hospital. Cultural beliefs of Thai people were also associated with the spirituality of elderly patients and the role of caring by family caregivers, as family is often a primary source of support. Ultimately, evidence from this study suggests the healthcare providers’ information may involve the patient in consultations, informing patients about cancer prognosis and responding to their needs. These may help to develop a knowledge base for communication and educational materials that reflect the needs of elderly cancer patients.

Patients with communication and swallowing needs during their hospital admissions on stroke units depend on speech and language therapy (SLT) and nursing staff for their care, yet very little is known about how they interact to accomplish that care. This study is the first to direct focused and sustained attention to how these two disciplines share information to meet their common clinical interests in patients with communication and swallowing difficulties. This ethnographic study was based on three stroke units in one inner city area of the UK. The study explored how the two disciplines engaged with each other as they went about their work on the wards in order to understand what influenced how they interacted, what they talked about, and professional alliances. Qualitative data were collected during 357 hours of fieldwork and included 43 interviews with speech and language therapy and nursing staff and the patient records of 19 patients. Data was primarily interpreted through the lens of symbolic interactionism, with additional support from bioethics, high reliability principles, professional socialisation and humanising care. As part of this study, a systematic review and meta-ethnography was completed and this generated a new conceptualisation that the contingencies of need, capacity, opportunity and quality of relationships underpin communication between therapists and nurses. This conceptualisation was applied to the SLT-nurse relationship through the ethnographic study. The temporal-spatial context was found to create the conditions through which swallowing information was privileged over communication information, with little interdependence between SLT and nursing roles with patients with stroke-associated communication difficulties. Structured routes for sharing information on the units were less useful to nurses than SLTs, and relationships between SLTs and nurses were hard to build. Despite swallowing having a higher profile on stroke units, the temporal-spatial context introduced ambiguity to swallowing recommendations creating dilemmas for nurses associated with the intermittent presence of SLTs. Improved sharing by SLTs and nurses of information they hold about how best to meet patients’ needs has the potential to benefit patient care.

The Care Act 2014 imposes a duty on local authorities to make statutory safeguarding enquiries when they suspect that an adult with care and support needs is self-neglecting. The Act also imposes a duty on local authorities and relevant partners, such as health and housing, to work in partnership. However, safeguarding adult reviews and government ombudsman investigations have shown a consistent failure of agencies to work together on cases involving self-neglect. The aim of this research is to develop an understanding of how multi-agency working in self-neglect cases can be improved, whilst respecting the autonomy of service users who self-neglect. This research applies the methodology of professionalising action research in a new setting, that of multi-agency working in the public sector. It is the first study to include the views and input of the full range of agencies who might typically work with people who self-neglect. Following a pilot project, fifteen different professional groups from two local authorities in the North of England were identified, who work with people who are self-neglecting. More than 30 group interviews were carried out with these staff in the problem-sensing phase of the action research, to identify priorities for change. Subsequently, two multi-agency workshops were held in each local authority, involving a total of 120 staff from the various agencies, to identify how change could be implemented. The research provides important insights into how practitioners assess the effectiveness of working together in this complex and demanding area of practice. A key message from the research is the extent of the disarray in multi-agency working, and the research extends the discourse on multi-agency working in four main areas of difficulty; inter-agency conflict, inter-agency communication, professional role understanding, and achieving change in multi-agency working. New findings in the research challenge assumptions about how practitioners from a wide range of agencies operationalise the Mental Capacity Act 2005 in relation to people who self-neglect. Overall, rich insights into working practices emerge, and the author gives recommendations for changing and improving multi-agency working with people who self-neglect. Furthermore, using a professionalising action research approach allowed solutions to be identified by participants, which have begun to be translated into practice.

Background: Atrial fibrillation (AF) is the most common cardiac arrhythmia, affecting around 2% of the population. AF Symptoms, increased risk of stroke, along with anxiety about illness course, potential complications and adverse treatments effects can have a clear detrimental effect on patients' Health Related Quality of Life (HRQoL). A literature review revealed inadequacies in the methods used to develop extant HRQoL measures, most of which have had limited patient involvement in their development which potentially limits validity. Aim: The aim of the PhD research project was to develop a novel and AF-specific HRQoL measure with greater emphasis on patient involvement throughout development; and to conduct preliminary testing of the instrument's psychometric characteristics. Methods: The development of an AF-specific HRQoL measure involved several interrelated study phases. The first item generation stage used a series of focus groups (k=8) made up from patients with paroxysmal (n=7), persistent (n=9) and asymptomatic (n=5) AF; relatives of those with AF (n=3) and healthcare professionals (n=7). Item selection and assessment of face and content validity was assessed by a series of reviews by health care professionals (n=6), patients (n=2), academics (n=3) and patient organisation leads (n=1); individual interviews with patients with AF (n=15) and healthy controls (n=3). Transcripts from the focus group, interviews, and panel meetings were thematically analysed to derive AF PROM domains. Items were generated to reflect these domains. Preliminary validation of AF PROM was based on survey completion by participants with paroxysmal (n=46), persistent (n=22) and asymptomatic (n=9) AF and healthy controls (n=29) recruited from Barts Health NHS Trust and the AF Association website. Completion of AF PROMs, a generic QoL measure (WHOQOL-BREF) and an AF symptom questionnaire allowed the factor structure of AF PROM to be evaluated using Principle Component Analysis (PCA), internal consistency was evaluated using Cronbach's alpha, and convergent and discriminant validity using Pearson's correlation coefficient. Findings: Item generation and selection phases identified five domains of HRQoL affected by AF, which formed a 28-item scale. From the five themes identified in the qualitative phase, PCA identified five different underlying components. Internal consistency of individual components ranged from α = .779 (component five) to α = .942 (component one). Initial results support the convergent and discriminant validity of AF PROM (AF PROM and generic QoL measure [r= .624; p< 0.00]) (AF PROM and symptom measure [r=-.734; p< 0.00]). Conclusion: The AF PROM scale appears to be a psychometrically sound instrument of HRQoL. Following these preliminary validation stages, further work in a larger population is recommended and planned prior to wider use.

Decisions about health and care are rarely uncomplicated, and in maternity, they are no less so. In England, choice is at the forefront of maternal health policy, which maintains that women with straightforward pregnancies should have a choice of place of birth. A growing body of evidence shows that midwifery-led settings, such as midwifery units and home birth, are as safe as obstetric units (OUs), and that women planning their births in these settings have better outcomes with reduced chances of medical interventions and caesarean sections. However, a majority of those eligible for midwifery-led care are still giving birth in OUs. Policymakers, clinicians and stakeholders are now focused on augmenting 'informed' choice about place of birth among parents as a means for improving services and uptake, zeroing in on decision-making as the crucial point in which it is initiated and formed. What delineates an informed choice, and how does decision-making during pregnancy engender such a choice? Creating decisions aids or rolling out models of 'shared decision-making' are popular solutions for augmenting informed choice, with the intention of easing the burden of decision-making for parents. Researchers commonly approach each from a disembodied standpoint, assuming rationality in complex, lived phenomena that are in actuality neither linear nor uniform. This thesis, instead, explores decision-making and choice as a process, building an ethnographic account of parents' place of birth decision-making experiences in East London and investigating the feasibility of research related to decision aids and informed choice. To achieve this, I conducted two studies over nearly two years: a community based study situated in the boroughs of Newham, Tower Hamlets and Waltham Forest; and a feasibility study based in Barts Health NHS Trust, which offers all four birthplace options for women with straightforward pregnancies. I argue, contrary to long-held decision theory, that decision-making about place of birth is an embodied practice, one that has corporeal, temporal and affective modalities and involves enskilment built up before, during and after pregnancy. Modern English maternity continues to be a nexus of biomedical and obstetric dominance, uncertainty in terms of risk and safety and notions of good motherhood, all of which are layered through women's decision-making and reified by the frameworks that shape it. My analysis illuminated that informed choice, in the context of place of birth decision-making, is a culmination of skilled practice, a phenomenological and embodied event. Its establishment, in maternity policy and care, is marked by silences concerning knowledge and services. Current conceptions of choice in English maternity are built on a market ideology, which places the onus of improvements to services on women and their families; however, in seeing parental decisionmaking and informed choice as embodied, we can begin to envision future policy and practice based on a platform of human rights.

Adolescent self-harm has been recognised as an international healthcare concern. Given the challenge that self-harm presents for adolescents and professionals, this thesis aimed to provide a more in-depth understanding of the experiences of adolescents who self-harm and the professionals working with them. Chapter one is a systematic review investigating qualitative research exploring adolescents’ experiences of self-harm. Twelve studies were identified through electronic database and manual searches. Building on the individual studies, the Thematic Synthesis identified the paradoxical nature of self-harm: Control (self-harming to gain control yet experiencing self-harm as uncontrollable), Purpose (self-harm as a form of selfpreservation or self-punishment), and Others (stigmatising and helpful responses). Policy and clinical implications concerning increased education regarding self-harm and the paradoxes are discussed. Limitations and research recommendations are also considered. Chapter two is a qualitative research study that used Interpretative Phenomenological Analysis to explore the lived experiences of nurses who work with adolescents who self-harm within community Child and Adolescent Mental Health Services (CAMHS). Ten nurses participated in semi-structured interviews. The analysis led to the identification of two superordinate themes, each with two subthemes. The findings suggest that CAMHS nurses experience a range of personal and professional conflicts in their work with adolescents who self-harm, and the systems around them. All nurses described a process of development, learning to manage the conflicts and emotions they experience, as well as gaining confidence and understanding through experience. Policy and clinical implications are considered, including supervision and training to understand and manage these conflicts. Limitations and research recommendations are also discussed. Chapter three is a reflective account of the author’s experience of conducting this research. The author discusses the value of reflective practice, and reflexivity within the research process, and their position as a researcher and ‘partial insider’. The author reflects on their experiences and personal and professional development, and how these paralleled the experiences described by the research participants.

Despite the increasing regulation of their use, restrictive interventions continue to be used in psychiatric inpatient services, including secure services. The literature asserts such practices cause distress to all involved. This thesis informs an in-depth understanding of the experiences of both the nursing staff and patients involved in incidents of restrictive practice, concluding with the author’s reflections on the research process. Chapter I: Chapter one offers a meta-ethnographical review of the qualitative literature exploring nurses’ experiences of restrictive interventions in inpatient psychiatric services. Following a systematic search of the literature, 11 studies were included for review and the quality of each was assessed. The review generated three meta-themes, including ‘The Conflicted Nurse’, ‘The Distressed Nurse’ and ‘The Surviving Nurse’, reflecting nurses’ journeys before, during and after incidents of restrictive practice. The clinical implications of the findings, along with future directions for research are discussed. Chapter II: Chapter two reflects an empirical piece of qualitative research. Using interpretative phenomenological analysis, patients’ lived experiences of restrictive interventions in a forensic, inpatient service were explored. Three superordinate themes emerged, including ‘Powerlessness’, ‘A Sense of Injustice’ and ‘A Sense of Resignation’. The clinical implications of the findings, along with future directions for research are discussed. Chapter III: Chapter three offers a reflective account of the author’s experiences of the research process. Specifically, it explores the reason that the author chose to study restrictive practices, followed by reflections on the recruitment and interview stages of the research, and the conflicts experienced between the researcher and clinician roles.

This thesis explores experiences related to stroke survival, firstly, from the perspective of stroke survivors themselves and secondly in the context of husbands caring for their wives post-stroke. The first chapter presents a meta-ethnography investigating stroke survivors’ experiences of their ‘identity’. Eighteen qualitative studies were identified for inclusion. Two major themes were identified: Loss of Self and Renewed Self. It was recognised that although survivors lost aspects of their identity, they were able to maintain a core sense of self and engage in a process of transformation, leading to a renewed self-identity. The findings highlight a need for greater sensitivity to the relationship between the nature of physical impairments and their interaction with psychological loss. Further recommendations are made relating to interventions to support survivors in the process of both continuity and transformation of the self. The second chapter reports a qualitative study exploring the experiences of husbands who provide care for their wives who have survived a stroke. Six husbands participated in semi-structured interviews. Interpretative Phenomenological Analysis was used to gain an in-depth understanding of their experiences. Three superordinate themes were identified: Role-identity, Self-identity and Dyadic-identity. Husbands experienced changes to their roles and identity, an impact on their psychological wellbeing and changes in the connection with their wives. Three clinical implications are discussed, firstly, the carers should be supported to maintain their identity alongside the caring role, secondly, there is a need for a more supportive framework designed with the needs of male carers in mind, and thirdly, services need to recognise and address the issue of loneliness amongst informal carers. The third chapter is a reflective paper exploring the author’s experiences of the research process. This paper discusses their learning and development as a reflective scientist-practitioner and highlights action points to inform their future clinical and research practice.

Introduction: With signs of climate change and global warming recently, Malaysia, as one of the tropical countries in the world, is vulnerable to wide-scale disasters such as floods, tsunamis and earthquakes. Thus, it requires a response from healthcare organisations; including nurses, who are the largest population within the healthcare profession. They play a significant role in helping the affected population. Other disasters such as mass casualty incidents, pandemics and armed intrusion also require a response from the healthcare disaster response team. Within Malaysia’s local context, studies of nurses’ experiences during a disaster are rare. Therefore, this study aimed to explore nurses’ experiences of working in a disaster situation and to identify factors that contribute to and that hinder the nurses’ response. Methodology and Methods: This is a qualitative study using a constructivist grounded theory approach. Thirty nurses were recruited from nine hospitals across seven states in Peninsular Malaysia, between January and September 2016. Five emergency physicians were also interviewed about nurses’ involvement in disasters. Semi-structured, in-depth one-to-one interviews were used to gain rich data on the nurses’ experiences. Findings: ‘Ensuring individual sustainability when in a hostile environment’ was identified as the core category, overarching the three categories of 1) establishing competencies and responsibilities, 2) managing emotions and 3) getting support. These categories formed the foundation of a model named ‘Being A Disaster Nurse’. The findings revealed that a concern of the nurses in this study was ‘being unprepared’ for a disaster response. Conclusion: This study adds to the current body of knowledge on nurses’ experiences during disaster responses, in particular amongst Malaysian nurses. This study adopted constructivist grounded theory, which is a relatively new approach amongst researchers that have an interest in disaster nursing. In addition, this study identifies the role of religion as a coping mechanism for the nurses who have been involved in disaster response. By offering them the competencies, support needed and actions that could assist them to manage their emotions, it could lead to nurses being more prepared and able to cope with disaster situations, enabling the provision of appropriate disaster management. Therefore, it is vital for healthcare administrators to ensure the sustainability of the nurses while responding to disaster events.

Background: People experiencing homelessness consistently fail to access palliative care services (Care Quality Commission, 2017). They often die young, on the streets or in hostels, and without adequate support. The average age of death for a person experiencing homelessness is 47 years for a male and 43 years for a female. However, despite homelessness increasing in the United Kingdom, research specifically concerned with end of life care for this population has not yet been prioritised. Furthermore, while there is ample literature surrounding the barriers to appropriate end of life care (Klop et al., 2018), the end of life priorities of homeless people in the United Kingdom remain poorly understood (Care Quality Commission, 2017) This study aims to bridge the gap in knowledge. The Research Question: The central question for this research is: ‘What matters most to people experiencing homelessness in the United Kingdom as they consider their own end of life?’. When the answers to this important question are understood, the issue of homeless people dying without adequate support and with very little dignity or choice can begin to be addressed. Aim of study: The aim of this interpretive phenomenological study is to explore the end of life concerns, fears, preferences and priorities of a sample of people experiencing homelessness in the United Kingdom. Methodology: This qualitative PhD research is an interpretive phenomenological study underpinned by the philosophy of French phenomenologist, Maurice Merleau-Ponty. Data have been collected through semi-structured, audio-recorded, face-to-face interviews with 21 participants across several counties in the United Kingdom. Data have been analysed iteratively using thematic analysis. Findings: Findings have been presented within the following eight themes to tell the stories of participants’ concerns, fears, preferences and priorities regarding end of life: spiritual concerns; practical concerns; fear of needing care; fear of being forgotten; preference for dying suddenly; preference for being somewhere comfortable where people know me; prioritising autonomy and self-determination; and prioritising authenticity. Discussion Findings have then been viewed through the lens of Merleau-Ponty’s philosophy using the following six dimensions of his philosophy: perception and embodiment; temporality and perspective; ambiguity and mystery; intentionality and relationality; situated freedom; and childhood experiences. Implications for future policy and practice have been outlined and a strengths-based, trauma-informed, person-centred, collaborative ‘compassionate community’ approach to care has been recommended. Conclusion: Discussion of the findings exposed four key messages: the pauper’s funeral is a real but previously unreported concern for homeless people in the United Kingdom; the ‘face of care’ is more important than the ‘place of care’; traditional palliative care services are possibly an unattractive resource for this population so new approaches to care are required; and a strengths-based, trauma-informed, person-centred, collaborative, ‘compassionate community’ approach to care is recommended. This is where the hostel is established as the hub of a compassionate palliative care community within a local neighbourhood and where the development of peer support workers, with lived experience of homelessness, is actively encouraged and supported.