Organ donation continues to be low among ethnic minorities especially within the South Asian community, with a disproportionate number of South Asian people waiting for transplants because suitable matches are often found between people of same ethnic group. This thesis seeks to explore, identify and overcome the barriers to increase the number of South Asian organ donor registrants (ODR’s) and actual donors in the North West of England using and measuring the impact of different education approaches. A two phased, sequential explanatory mixed-methods approach was underpinned by health belief model theory. Phase 1: Questionnaire survey (n=907) and in-depth interviews (n=10) to understand South Asian beliefs, barriers and awareness of organ donation. Chi-squared tests and thematic analysis explored the existence of associations between outcomes, demographics and attitudes. Phase 2: Implementation of education approaches: (1) Education and training of Specialist Nurse for Organ Donation (SNOD) to develop skills/confidence to approach South Asian families for cadaver organ donation, measured by 12-month before/after audit of cadaver organs. (2) Education from the General Practioner’s (GP’s). (3) Peer education at South Asian community events, impact measured by number of new organ ODR’s. Out of 907 South Asian people sampled, 55% did not know about organ donation, they lacked knowledge, mistrusted health professionals, and were misinformed regarding religious objections, despite 88% having higher education. Over 24 months, 2874 South Asian new ODR’s were successfully recruited through peer education at 289 community events by a passionate, committed South Asian health professional. Recruitment of ODR within primary care was poor, GPs reluctant and lacking confidence to discuss organ donation, due to lack of time and uncertainty of religious issues. Targeted SNOD’s cultural education increased slightly the number of cadaver donors, as their confidence in approaching South Asian families increased. Formal training of SNODs and health professionals (GPs) with respect to culture and religious organ donation was scant and required a national cohesive approach. The research provides a deeper understanding of the reasons for the scarcity of South Asian organ donors gathered from what is currently the largest UK data set of South Asian perspectives. Peer education of the South Asian and collaboration with religious leaders is crucial to overcoming the shortage of organ donors in the future. However, the important and pivotal role played by a South Asian co-ordinator/networker to engage and sustain relationships with key ethnic community leaders cannot be overstated.

Ethiopia, one of the poorest countries in the developing world, has limited resources for those with advanced cancer requiring end of life care. This thesis explores the care of the dying situation in Addis Ababa, as families access palliative care services. A critical review examined palliative care set-up in sub-Saharan Africa and the Middle East and explored models of care used and the multiple factors affecting palliative care delivery. The review revealed a dearth of knowledge about care of the dying in Addis Ababa. A further review provided insight into cultural aspects of good death. A focused ethnography, carried out over a 6-month period at a hospice facility, involved participant observation, interviews and home visits with staff, patients and family. Following thematic analysis a number of significant themes were revealed. The importance of emotional support by family and hospice staff was found to be the essence of care provision. The awareness of a terminal diagnosis is often kept from the ill person so as ‘not to upset’, thus protecting them emotionally from distress. Various communication strategies were used by staff to create openness, though ultimately they deferred to the dying person’s family; also family and hospice staff talked ambiguously about dying. Emotional care was expressed by family members ‘stopping everything’ to care for their dying relative. Through physical care, the dying person’s emotional equilibrium and comfort were maintained. Hospice staff provided a ‘family-style service’. This study offers unique understanding into non-disclosure of terminal diagnosis and how the family emotionally protects the dying person. It gives valuable insight into how families and the emerging Ethiopian palliative care service together provide care for the dying. The study has implications for international relief workers and professional carers. This study points to further research into care of the dying in rural communities in Ethiopia.

Background: People living with HIV (PLWH) accessing antiretroviral therapy (ART) report worse mental well-being than general populations and those with other chronic conditions. Aim: To evaluate the effectiveness of a nurse-led palliative care intervention on the mental well-being of PLWH on ART in Kenya compared with standard care. Methods: A randomised controlled trial (RCT) with longitudinal monthly follow-up over five time points and qualitative exit interviews was conducted. The primary outcome was psychological quality of life (Medical Outcome Study-HIV), with secondary outcomes being psychiatric morbidity, worry and ability to share feelings. Eligible participants were adults on ART reporting moderate to severe pain or other symptoms. Analyses included ordered logistic regression at monthly time points and multilevel modeling to identify intervention benefit. A purposive subsample of 30 participants across both study arms were selected for qualitative interviewing. Thematic analysis explored active ingredients of the intervention and experiences of study participation. Results: 16% of all patients screened were eligible; 56% refused to participate. 120 patients were recruited (mean age 39, SD 8.9, 81% female) and equally randomised to each study arm. Quantitative data analysis found significant benefit of the intervention in psychological quality of life (coefficient 0.59 (CI 0.12-1.07), p=0.015), psychiatric morbidity (coefficient -0.50 (CI-0.96 to -0.03), p=0.035) and ability to share feelings (coefficient 0.92 (CI 0.28-1.56), p=0.005). Qualitative analysis identified three active ingredients of the intervention: insight and understanding, medication and time. Unresolved physical, social and financial problems were identified as barriers to improvement. Aspects of study participation found to improve mental health and well-being were compassionate care, social support, communication, and material support. Conclusion: The intervention was effective in improving mental well-being through health information, symptom relief and enabling participants to articulate problems. Aspects of study participation benefited participants in both study arms, highlighting unmet needs of PLWH.

In 2008 Anthony Nolan opened the UK’s first public umbilical cord blood (CB) bank (Anthony Nolan Cell Therapy Centre, ANCTC) in which CB is stored for haematopoietic stem cell (HSC) transplantation. Due to strict quality thresholds, the majority of units are not suitable for transplantation. Therefore, ANCTC aims to create a Biobank allowing these units to be stored for other purposes. To ensure cell products retained high levels of viability and potency, this study optimised banking processes starting with assessing the effects of transport conditions. It is essential that units are of the highest possible quality upon arrival at ANCTC, yet there is no consensus as to the optimal transport conditions of HSCs. Therefore, different fresh storage temperatures and the effect of delaying cryopreservation was assessed on three sources of HSCs. Cells were found to be better maintained at refrigerated temperatures and to avoid significant losses in potency, delays in cryopreservation should be minimised to <24 hours for bone marrow and <48 hours for CB and mobilised peripheral blood stem cells. Based upon these observations, ANCTC maintains all fresh samples at refrigerated temperatures and aims to cryopreserve them within 24 hours of collection. Banking cells involves cryopreservation and potentially long term storage of samples, however, suboptimal cryopreservation conditions can result in reduced cell viability. Cryoprotectants are used to reduce damage during the freeze and thaw stages of cryopreservation but they have been linked to toxic effects observed in cells. Dimethyl sulphoxide (DMSO) was found to exhibit a dose-dependent toxic effect on CB and optimal concentrations were found to be between 7.5% and 10% (v/v). This study also highlights the importance of minimising exposure to DMSO to <1hour prior to freezing and <30 minutes post-thaw. In addition, the presence of 1% (w/v) dextran-40 in the cryoprotective solution was found to be crucial to maintaining cell potency. The Biobank would require the storage of specific pure cell populations. Tregs are vital for the homeostasis of the immune system and have the potential to be used therapeutically in autoimmunity or transplantation, thus making these cells an ideal candidate for the Biobank. CB Tregs were found to have reduced suppressive abilities compared to their adult counterparts, due to lower levels of FoxP3 intensity and CD39 expression. However, their higher frequency and a more defined CD25+ population facilitates the isolation process. Two banking strategies were assessed, using both research and GMP grade methods. Firstly banking an isolated pure Treg population which, post-thaw, the cells maintained their phenotype but viability and suppressive ability was reduced. Alternatively, mononuclear cells were banked and Tregs isolated post-thaw. This strategy resulted in comparable isolation yields and purities compared to fresh cells, however, improved viabilities and higher suppressive abilities were observed compared to the cryopreserved pure Treg samples (p=0.0012). Therefore, this banking strategy was found to be more efficient. Overall, this study has optimised banking procedures from the transport of fresh samples to isolation and cryopreservation of pure cell populations. Therefore, this study has laid the foundations for the creation of a Biobank within the ANCTC allowing the distribution of cell products not only for research purposes, but also potentially for their use in immunotherapeutic interventions.

This thesis addresses the issue of self-harm by ingesting foreign bodies, a form of self-harm which has received little research attention. Part one presents a systematic review of the literature on deliberate ingestion in adults. This aimed to critically assess the literature to ascertain the current theoretical understanding of ingestion and identify gaps in the evidence base. Most of the literature identified was predominantly surgical in orientation, meaning there is to date little understanding of the psychological processes which underpin ingestion. No qualitative research has been undertaken into the experiences of those ingest, or the staff who work with them, which could serve to redress this deficit. Part 2 presents a qualitative study utilising a constructivist Grounded Theory approach which investigated the meanings and functions of ingestion from both a patient and staff perspective. Six patients and six members of staff were recruited from independent sector providers and the NHS. Analysis of the semi-structured interviews revealed a core category of a ‘Journey through Ingestion’ which was characterised by the three stages, ‘Starting Swallowing’ ‘Discovering the Benefits’ and ‘Breaking Free’. The category ‘Struggling with Swallowing’ identified interpersonal and systemic processes within the inpatient environment which were key to understanding ingestion. Part 3 offers a critical reflection on the process of conducting this research. It focuses on four key areas: recruitment, the interview process, transcription and analysis, and the integration of staff and patient perspectives. In light of these discussions it offers recommendations for future researchers and clinical services providing treatment for patients who ingest.

Organ transplantation is one of the greatest medical innovations of the 20th century, providing individuals facing death a hope of survival. In the context of the UK this life saving procedure is totally dependent on the altruism of the potential donor’s family. Currently demand for transplantable organs outstrips supply, resulting in 1000 individuals dying each year. Donor family refusal has been consistently identified as the greatest obstacle preventing an improvement in donation rates. The need for new theory and theory driven methods in understanding donation consent has been highlighted in the existent literature. To date there is a notable absence of a theoretical framework that allows for both individual and external level factors to be analysed together, thus providing a truly holistic depiction of this complex human behaviour. This thesis seeks to fill this notable gap by exploring donor family consent from a radical behaviourist perspective via the application of the Behavioural Perspective Model (BPM). Specifically this thesis documents a dual-phase sequential research strategy that seeks to answer three overarching research questions: (1) Can the decision to consent be understood as an operant process? (2) What patterns of reinforcement increase the likelihood of consent? (3) Can donor family consent be stimulated via behavioural intervention? The first empirical phase utilises a case study approach in the exploration of donor family consent, drawing upon multiple sources of evidence (n = 55). The second empirical phase builds upon the findings of the first by utilising a novel simulated laboratory experiment methodology to examine how organ donation consent can be stimulated in different hypothetical scenarios based upon the eight contingency categories of the BPM framework (n= 50). The results of the employed empirical strategy demonstrate the usefulness of the BPM as an interpretative device in this important health context and thus extend its applicability beyond the traditional consumer behaviour domain. Four key findings have resulted from the two empirical phases of this thesis: (1) the role and importance of positive learning history in influencing consent (2) the open behaviour setting preference of donation decision makers (3) the success of informational reinforcement in stimulating consent and (4) the role of pleasure in the consent process. This thesis complements existing organ donation knowledge by adopting a radical behavioural perspective. In addition to making a unique contribution to existing knowledge by offering a new theoretical perspective to this context, the findings of this thesis offer implications for social marketers on the ways in which consent may be stimulated.

Palliative day care is offered to patients with a life-limiting illness. It provides a range of services to meet the varying needs of individuals. Consequently, the service is multidimensional and the outcomes are hard to define. This means this service operates at a level of complexity that is different from other health care services. This presents a challenge for evaluation since the activities differ across individuals and change over time, depending on their needs. This challenge is not unique to palliative care and is relevant to the evaluation of other services. The published guidelines for health economic evaluation have not explicitly taken into account the specific issues relevant to evaluating complex services. It is argued in this thesis that the 'health gain' approach is problematic and a preference-based approach may reveal more useful evidence for policy-makers. This has not been fully considered in empirical studies. A study was undertaken using health-gain and preference based approaches to evaluate a new palliative day care service. The EO-50 health-related quality of life instrument was used to detected differences in outcome between patients who attended a palliative care day centre and those who did not. The instrument did not detect significant differences over time. A choice experiment was also undertaken in four POC centres. This approach estimates the relative preferences that respondents expressed for specific service attributes. The attributes chosen for this study were: opening hours, access, specialist therapies; medical support; hairdressing and bathing. The results showed that specialist therapies were relatively more valued, and that hairdressing and bathing were not important in decision-making. Access to medical care was less important than access to specialist therapies. The thesis critiques health gain approaches for services that have a broad range of hard-todefine goals and aim to meet individual needs. The choice experiment provided insights into how services are valued where these insights cannot be derived from other economic evaluation approaches. Research methods that reflect people's preferences may provide important analysis where very little evidence has previously existed.

This thesis examines the choice of first post after qualifying among student nurses. Specifically it reports on a census survey using a purpose designed questionnaire completed by final year undergraduate student nurses in three higher education institutions offering undergraduate pre-registration nursing education. Both internal and external influences on the student's choice of first post after qualification were examined. These influences included those on choice of nursing speciality and patient group and on the specific first post preferred by the respondents. The effects of the student's ethnicity, their individual educational programme (Diploma in Higher Education or BSc Hons) and their educational institution are considered in relation to their specific influences on choice of first post. The concept of career was examined both from theoretical and participant's perspectives. Additionally, the nature and effect of career guidance aimed at facilitating choice of first post was examined and was contrasted with career guidance aimed at longer term career choice. The thesis outlines how these data can be used to provide an effective model of career guidance specifically aimed at the study population by adapting an existing career development model which does not at present address the needs of this population adequately.

Children with altered body images due to chronic illnesses, surgery, genetic diseases or disabilities are living longer (Newacheck et al., 1998) which requires nurses to undertake their basic nursing role of providing psychological support though offering information, counselling and nursing rehabilitation (Johnson, 2000 Maguire and Parkes, 1998). The parents of these children face a drastic change in their lifestyle which requires them to adapt by using personal, family and community resources, according to Hentinen and Kyngas (1998). The aim of this study was to explore the perceptions of Greek nurses and parents of children with chronic health problems (CHP) in relation to the nurse's role of offering psychological support. This study used a data and methodological triangulation approach which included two levels of persons, parents and nurses, and a combination of qualitative and quantitative paradigms. A survey was given to 103 parents and 83 community or hospital nurses, from these samples 30 parents and 30 nurses were chosen to be interviewed. King's Conceptual Framework of Goal Attainment (CFGA) guided the study and provided a framework in which to present the findings. The main findings from the descriptive analysis, chi-square and Fisher's exact tests, along with the qualitative findings, concluded that many nurses and parents both felt that nurses were not well enough informed, many nurses had offered information but parents refused to accept it and that many parents and nurses were unaware of the nurse's role in nursing rehabilitation. A disagreement was found between the samples as to whether or not it was the nurse's role to evaluate the adaptation of the child and his parents, an important part of nursing rehabilitation according to Gibbons et al. (1995). Additional findings were that a few parents had the fear of surgery for their child, there was great disagreement concerning the importance of whether or not these children should attend public school and that many health conditions could have been prevented. Although religion had not been included in the questionnaire, during the qualitative portion of the study the parents emphasised the importance of their Greek Orthodox religion as a source of strength. Comparisons of the perceptions of both sample groups provided information which may assist in developing future approaches in nursing practice, nursing research and nursing education.

In this study I examine the care trajectory of terminally ill patients across three different sites in the hospice setting: home care, day therapy unit and in-patient unit. I will focus on the patients' journey and the nurses' ways of working in each setting as the continuum of care progresses towards the end of life. Much of this work is accomplished through talk, so by focusing the analysis on nurse-patient encounters, this study aims to fill a gap in this sensitive area of health and social care. The study is rooted in the prevailing philosophy of palliative care which aims to address 'total pain', that is, social, emotional, and spiritual, as well as physically occurring phenomena. Upon diagnosis of terminal illness, it will be argued, the patient undergoes a shift in the conceptualisation of 'self. The focus of my analyses will therefore be the interlocking themes of social death and hope vis-a-vis the biological event. I will argue that the concept of social death mediates the interactional trajectories, while hope and 'healing', in the palliative sense, may be seen as counterpoints to the inevitability of the end-of-life journey. The process of social death can be viewed as a continuum as patients experience physical losses and deterioration that will in most cases lead to the institutional setting of the in-patient unit. Palliative care nurses and patients have the opportunity to intersect the continuum with interactional strategies that have the potential to promote hope in order to deflect from the suffering of total pain. The main findings can be captured in terms of the contextual differences across the three care settings as the care process occurs at different stages of the patient's terminal journey. For the purposes of demonstrating the complex interplay of these experiential domains, I adopt a theme- oriented discourse analysis.