It is widely acknowledged within rehabilitation services for people with Acquired Brain Injury, that there is considerable variation in the degree of engagement, and that this has the potential to affect outcomes. While it is recognised that subjective beliefs are an important factor in engagement, little is known about how clients perceive their experience, what expectations they have in relation to recovery and rehabilitation, and how their perceptions impact on engagement with rehabilitation. This research aimed to explore clients' perspectives and increase knowledge of clients' expectations of recovery and rehabilitation, prior to beginning community based rehabilitation; and to develop a theoretical explanation, upon which improvements in service delivery and practice can be based. The research aims were explored through a qualitative methodology, using a symbolic interactionist theoretical perspective to grounded theory, to facilitate the process of theory generation (Glaser & Strauss 1967, Charmaz 2006). Twenty-one people were interviewed prior to being seen by community rehabilitation services, including people with communication and cognitive impairments The central theme that emerged was hoping-despairing, with five further main categories: making sense of what has happened, moving forward, what can I do?, trusting/doubting others, and accepting. An explanatory framework was developed and a model was proposed, by which belief in self/others and belief in recovery interact to generate hope and readiness to engage. A focus group consisting of specialist rehabilitation therapists was conducted, to compare the expectations of clients and therapists. The findings suggest that expectations and beliefs at this stage in the rehabilitation pathway influence the degree of engagement with rehabilitation services, and that this has implications for clinical intervention. While the context of qualitative research is critical in interpreting findings, it is felt that there are wide implications for ABI services and other areas of health care.

Background: Little is known about the psychological effects on life after weight loss surgery. Results from the systematic review above showed some persisting disordered psychosocial quality of life and wellbeing in longer term follow up periods in participants after the procedure when compared to control groups. This highlighted potential need for psychological intervention post-surgery and further research to provide more data on long term psychosocial impact of weight loss surgery. Even clearer was the lack of patient perspective on their experience and needs after having the surgery. Generating qualitative post-surgery data is vital as it gives health professionals detailed information on whether patients feel psychological care is needed after surgical obesity treatment and, if so, specifically what kind of care. Therefore the study aims were; 1) to explore patients’ experiences of life after weight loss surgery, discussing perceived benefits and limitations of the procedure, and realisation of patients’ expectations AND 2) triangulate patients’ experiences with the views of health professionals involved in surgery and ongoing care to examine concordance between the cohorts. Methods: Ten individuals who had had weight loss surgery between 2 to 6 years ago and eight health professionals were recruited within an NHS bariatric surgery service through purposeful sampling and individually interviewed by the researcher. The semi-structured interviews were transcribed and analysed using thematic analysis. Findings: Patients reported drastic weight loss and improvements in a range of co-morbidities in the first year that coincided with better psychological and social function. However long term experiential narratives revealed a need for psychological aftercare to support patients through physical and psychological changes. Specifically, issues of excess skin, acceptance of non-obese self and perceived prejudice following drastic weight loss were highlighted. Discussion: Overall it would seem that weight loss surgery is a great catalyst for weight loss in those suffering from severe obesity. However, this tool needs to go hand in hand with psychological support post-surgery to aid long term optimal results. In relation to health psychology, suggestions for theoretical application and health interventions to facilitate patients through postoperative adjustments after surgery are outlined as well as recommendations for better service provision.

Background: Hospital administrative data have been used to evaluate population-level surgical outcome in the UK. However, these data do not account for harm recorded outside of the hospital setting, nor pertain to health status as health status is under-represented by conventional diagnostic coding. A systematic review of the literature identified studies reporting on changes in quality of life associated with surgical adverse events (SAEs). The evaluated studies demonstrated a significant correlation between short-term surgical harm and long-term physical and mental well-being. Interactions between harm and health status have not previously been studied using population-level data. Hypothesis: Patient-level linkage of multiple routine databases can improve our understanding, measurement and risk adjustment of harm in gastrointestinal surgery. Methods: Almost a tenth of primary care patients in England with linkage of Clinical Practice Research Datalink, Hospital Episodes Statistics, National Cancer Intelligence Network, Office of National Statistics and Index of Multiple Deprivation databases were studied. Nine gastrointestinal surgical procedures were evaluated to measure short-term harm (technical SAEs, systemic SAEs) and long-term health status (postoperative psychiatric morbidity, postoperative symptoms). Risk factors derived from linked databases were evaluated against outcome including 30-day mortality, readmission, prolonged hospital stay, technical SAEs, systemic SAEs, one-year mortality, postoperative psychiatric morbidity and postoperative symptoms by binary logistic regression analysis. Predictive performance was compared between models with predictor covariates derived from linked databases and those derived from hospital data only by assessing discrimination. Results: Overall, 73655 patients who underwent 75854 procedures between April 2000 and March 2011 were evaluated. At least one SAE within 30 days of surgery was recorded in 10.7% of procedures. Of all recorded SAEs, 28% were identified in primary care data only. The proportion of post-discharge SAEs was 42.5%. Within twelve months after surgery, postoperative psychiatric morbidity was recorded in 11.4% of procedures and postoperative symptoms in 16.9% of procedures. Regression analysis revealed that technical SAEs were associated with increased risk of poor postoperative health status. When adjusted for SAEs, new onset postoperative psychiatric morbidity was associated with significantly increased risk of one-year mortality (OR = 1.48, p < 0.001). Postoperative mental health status therefore had a significant impact on survival, and this association was particularly strong in patients undergoing surgery for upper gastrointestinal malignancy. Prospective studies must therefore explore the role of early recognition and development of interventions to reduce the impact of this type of harm. Linked databases improved the performance of prediction models for all outcome. However, this was though to be of clinical value in models predicting postoperative psychiatric morbidity only. Conclusions: Linked routine databases characterized the overall burden of surgical harm and poor health status in gastrointestinal surgery. Using this important information resource, interactions between short and long-term outcome were identified. Prediction of poor health status improved to a level that could inform policy. Further development of analytical methods and validation of data may pave the way for large-scale evaluations of quality within integrated health systems using linked routine databases.

Aims: To explore the lived experience of patients with chronic venous leg ulceration and to establish whether themes that impact on quality of life are addressed during wound care consultations. To develop a consultation template based on these themes and to evaluate the feasibility of a future randomised controlled trial to evaluate template utility. Methods: Three phases were undertaken. The first comprised qualitative interviews with 9 patients to identify how themes impacted on the daily lives of those with chronic venous leg ulceration. The second phase used non-participant observation for 5 of the 9 patients to establish whether these themes were disclosed and addressed during consultations. A nominal group meeting of experts was undertaken to construct a new consultation template, which was verified by patient participants. The template was piloted with 9 new patient participants during the final phase to ascertain if a future randomised controlled trial to evaluate efficacy would be feasible. Results: Phase 1 established a range of themes and subthemes that served to diminish the quality of life of participants. Phases 2 revealed that many of these themes were either not disclosed by patient participants or, when raised, were often not fully addressed by the nurse during wound care consultations. The new consensus consultation template was developed and piloted during phase 3. iii Conclusion: Chronic venous leg ulceration impacts on every area of the patient’s life but often such concerns were not disclosed or effectively addressed during wound care consultations. Although the pilot of the consultation template demonstrated that a future randomised controlled trial would not be feasible, valuable information was provided to inform potential future study design.

Background: Medication adherence has shown to be problematic for many renal transplant recipients. While factors promoting or inhibiting medication adherence have been extensively researched, little is known about the processes leading to this behaviour as perceived by kidney transplant recipients. Also, no research on the perspectives of German kidney transplant recipients has yet been carried out. Research Question: The question underpinning this research was: “How do German renal transplant recipients perceive the processes leading to medication adherence or non-adherence?” Methods: Following informed consent, telephone interviews with 17 German renal transplant recipients were conducted, transcribed verbatim, and analysed according to the tenets of constructive Grounded Theory, until theoretical saturation was reached. The research has been approved by the research ethics committees of the School of Healthcare Sciences and the German Society of Nursing Science. Results: This research established the theory of medication-taking as a symbol of living with a chronic condition. This theory is underpinned by two categories: in the category reflecting on one’s own position, the participants discussed their role regarding the intake of medication, which was perceived very ambivalently and as just one component of self-management following transplantation. In the category experiencing facilitators and challenges, participants reported factors supporting or impeding medication-taking. Crucially, these are perceived very individually: what one finds helpful or challenging may be perceived in a fundamentally different way by someone else. Conclusions: This research has similar findings to other research in this field, such as the fact that renal transplantation is not a cure for a chronic condition. However, in contrast to other research, it has found a strong connection between medication-taking and participants’ self-reflection of being chronically ill. In this regard, it has emphasised the need for individualised care, preferably in the form of a team approach that includes patients and families as well as the different healthcare professions.

This thesis is an ethnography which explores acquired brain injury (ABI) survivor experiences of rehabilitation and compares these experiences with an analysis of discourses of ABI, as well as the social and organisational arrangements of rehabilitation services. Acquired brain injury interacts with the health care setting in complex ways. Many of the usual markers in which the individual might be interpreted as a patient such as assessing symptoms, the method of diagnosis, how the progress of the patient is viewed and the actual act of getting better are immensely complicated and, at times, even contradictory in this setting. Very often, these markers become negotiated. When the understanding of these different interactions between actors is contested, (e.g. when there is a disagreement between professional, family member and patient as to what a symptom might be or what a goal to work towards might be) this can become problematic. The ultimate objective is to use the study’s findings to inform ABI services and potentially enable better provision. Health care professionals work tirelessly in difficult environments, with increasing workloads and often with scarce resources. Research that specifically engages with the interactions within the health care setting will aid understanding of good practice and help prioritise the importance given to parts of the service which are currently under-represented. This research also aims to make a contribution to the sociology of biomedicine, healthcare organisation and work which investigates the body, identity and disability, particularly hidden disabilities. The practical implications of this research would inform decision makers of the extent to which identity work and participation underpins the success of the overall rehabilitation process.

This work investigates the uses of the Internet and email in health care and specifically focuses on the use of these technologies in the management and support of patients following kidney transplantation. Health information websites are recognised to differ widely in quality and reliability of their content. This has led to the development of various codes of conduct and rating tools to assess the quality of health websites. However, the validity and reliability of these rating tools and their applicability to different health websites also varies. In principle, rating tools should be available to consumers, require a limited number of elements to be assessed, be assessable in all elements, be readable and be able to gauge the readability and consistency of information provided from a patient's view point. This study addresses the design and evaluation of a patient-centred transplant online service consisting of a website and e-mail communication. The website focuses on providing health education to patients so that they can conveniently obtain useful clinical information, as needed in home or workplace settings. The online service was assessed for its acceptability and usefulness from patient's perspectives and for its efficacy in reducing patient's needs to contact primary or secondary care services regarding day-to-day health issues. The online service was purpose built, informed by a framework developed during this study. The framework can be used by transplant clinicians to develop and maintain their websites. Work to inform the framework included an evaluation of the quality of information found in kidney and liver transplantation websites. This evaluation used both expert reviews, based on a weighted hformation Scoring (IS) system and involving clinicians in the assessment, and user evaluations where patient's Internet use, and their suggestions about, and interest in, transplant websites were elicited. The use of email in answering health related questions in the group of the patients who took part in the study was also evaluated. Whilst the hflernet has made it possible for patients and their families to access vast quantities of information that previously would have been difficult for anyone but a physician or librarian to obtain, an important finding of the research is the existence currently of many poor quality websites. The results indicate overall that readily accessible Internet websites for liver or kidney transplantation patients provide a large quantity of, but poor quality, material. Based on surveys of patients needs, the study reported in this thesis highlights the fact that transplant websites should include information about life style in addition to purely medical-related topics. Incorporation of web tools, like email, is shown to effectively help solve many of the daily health problems of patients with organ transplantation. The transplant online service developed as a part of this study showed high levels of patient acceptability and effectively helped reduce the need for patients to access primary or secondary care. The results of this research support the potential of online services as an innovative approach for patient-centred care in organ transplantation.

Background: Spinal cord injury (SCI) is defined as a low incidence, high cost condition, however there is little information in the UK regarding the incidence, prevalence or associated costs of SCI. Additionally there is little evidence identifying outcomes or issues associated with delays in referral, admission or discharge from an SCIC or the impact of delays in provision of resources on reintegration outcomes. Research Aim: This novel study aims to determine factors and timings which may facilitate or limit successful rehabilitation and community reintegration for individuals with SCI. Map timescales and key indicators in the SCI injury and rehabilitation and reintegration pathways. Establish the impact of delays in provision of required resources on reintegration outcomes. Methods: An observational longitudinal study, collecting data regarding individuals from injury to one year post-discharge. Rehabilitation, reintegration and healthcare systems outcome measures to be evaluated were identified and included: community participation, quality of life, residential situation, readmission rate and vocational activity. Results: Delays in accessing services occur for a variety of issues and can have lasting impact. Many issues can affect progress and may have a more profound effect at particular points of the injury and rehabilitation pathway. At one year post discharge some subjects have fallen short of the identified outcomes; potential reasons for this are discussed in addition to issues that may have facilitated improved outcomes in some subjects. Conclusion: Some assumptions in SCI rehabilitation and reintegration have been challenged and some partially or fully supported. Novel findings have been identified in relation to physical social and psychological barriers or facilitators of outcomes following SCI. Potential areas for further research to increase our knowledge of issues for SCI individuals, SCIC services, acute hospital services and community services are identified.