An investigation into the functional and psychosocial impact of living organ donation

General Abstract Objective: In April 2006, the Scottish Liver Transplant Unit (SLTU) became the first NHS transplant unit in the UK to offer the option of Living Donor Liver Transplantation (LDLT). This represented a unique opportunity to evaluate the functional and psychosocial impact of LDLT upon healthy donors and their recipients. Subsequent aims were to investigate the challenge of introducing LDLT in Scotland and to establish the perceived deterrents and attractions of the procedure. An additional aim was to evaluate the impact of Living Donor Kidney Transplantation (LDKT) upon donors and recipients. Design: A series of cross sectional and longitudinal studies were designed for the purpose of this thesis (3 quantitative, 2 qualitative, and 1 mixed methods). Method: Self report questionnaires were used in each of the quantitative studies, with the addition of neuropsychological computerized tests in two studies. Semi-structured interviews were employed in the qualitative studies. Main Findings: •Prior to its introduction general support for the option of LDLT was found, although it was highlighted that the risk involved was not well understood by the general public. •Since becoming available LDLT has not been a readily acceptable treatment option from the perspective of patients due to the perceived risk for the donor, but it may be considered as a “last option”. Family members were motivated to save their loved one’s life but the personal implications of donating resulted in reconsideration of LDLT. • Staff at the SLTU perceived a lack of family commitment in relation to LDLT, which is explained as a cultural factor contributing to the slow uptake of LDLT. In Scotland, a donation from a younger to an older generation is not easily accepted. This, in addition to patients’ optimism that a deceased donation will arrive, and the poor health of potential donors, is thought to have affected the uptake of LDLT. As has the unit’s conservative approach to the promotion of LDLT. This approach is the result of a perceived reduction in the need for LDLT and a preference to avoid the risk to a healthy donor and conduct transplants with deceased donations. • In over 3 years, only one couple completed LDLT. The recipient showed functional and psychosocial improvement from pre to post procedure, whilst the donor showed slight deterioration in aspects of quality of life 6 weeks post donation, which did not always completely return to a baseline level by 6 months. The donor made sacrifices to provide her husband with a fresh start to life and unmet expectations were found to effect quality of life. •Willingness to become a liver donor is not thought to be influenced by the frame of the information provided. •Like the LDLT donor, LDKT donors experience some functional and psychosocial deterioration at 6 weeks post donation, but donors largely recover by 6 months post donation. However, the anticipated benefit to recipients was not evident and may not be quantifiable until after 6 months post operation. Conclusion: This thesis has added to current knowledge on living organ donation and specifically represents the first psychological evaluation of a UK LDLT programme. The slow uptake of LDLT was unexpected and has resulted in informative, novel research

What types of science count? Exploring the formal, informal and hidden curricula in undergraduate medical education, with a particular focus on beliefs about science and knowledge.

Background and Purpose. This PhD thesis is a qualitative research project using interpretive and socio-cultural theories in a case study design. It explores medical students’ beliefs about scientific knowledge and the nature of evidence as applied to medicine, at key transition points in their education. This thesis situates current theories and conceptual models of epistemological development from the fields of psychology and education within the emergent field of medical education. Its aim is to provide insights into personal epistemological development, any curriculum barriers to such and provide insights into how students can be better supported, notably in transition periods. It addresses both a gap in the literature and the calls for more research into the development of student epistemologies in professional education. The thesis key research questions are: • What are medical students’ beliefs and understandings about the nature of scientific knowledge as applied to medicine? • What curriculum factors appear to facilitate or inhibit medical students’ epistemological development, at key transitions? Methodology. The case study design involved a four phase approach; • Phase 1: This was a critical discourse analysis of key policy and curricula texts to explore assumptions, inconsistencies or disputes relating to science and scientific content in the field of medical education. • Phase 2: This was the observation of learning episodes in preparation for Phase 3 involving participants. The purpose of Phase 2 was to situate and ground conversations with participants in real experiences. • Phase 3: This phase involved task groups and semi-structured interviews with medical students and faculty participants based at the University of Exeter Medical School (UEMS). Task groups and semi-structured interviews explored individual beliefs about the nature of science and scientific evidence as applied to medicine generally and the Bachelor of Medicine, Bachelor of Surgery (BMBS) curriculum content specifically. This included its contested scientific content and the nature of complexity and uncertainty in evidence based medicine. • Phase 4: This final phase involved presenting the case study findings to two other UK medical schools to explore the tentative applicability or transferability. The purpose of Phase 4 was to consider how case-specific and context bound the case study findings are. Findings. Findings suggest there is substantial variation in how medical students and faculty talk about science and evidence in medicine. This is influenced by their experiences of courses studied prior to entering medical school and their maturity in age. Medical students described how faculty informally spoke about the ambiguity within medical practice as clinical decision making, but there were very few reports of faculty explicitly speaking about the uncertain and tentative nature of scientific knowledge underpinning applied medicine. The bio-sciences were still dominant in terms of curriculum and assessment content. Where science in medicine is defined and approaches to scientific research are stated, formal curriculum documents espouse a narrow and positivistic methodological approach, which serves to perpetuate misconceptions regarding scientific research within medicine and may influence epistemological beliefs about the nature of science within medicine. Discussion and Conclusions. It is anticipated this case study will afford medical educators and curriculum designers insights upon which to address imbalances, include appropriate content, and reinforce good practice, so that medical graduates are effectively prepared for the challenges of a career in medicine

Understanding public trust in services provided by community pharmacists relative to those provided by general practitioners: a qualitative study

Current UK initiatives, which aim to implement a range of pharmacist-led services, are undermined by lack of public trust. It seems improbable that the public will trust pharmacists to deliver unfamiliar services, which are perceived to be ‘high risk’, unless health systems change in a way that promotes trust in pharmacists. This may be achieved by increasing the quality and quantity of patient interactions with pharmacists and gaining GP support for extended pharmacy services

Investigating the Effects of Threatening Language, Message Framing, and Reactance in Opt-Out Organ Donation Campaigns

This study was funded by a PhD studentship awarded to Jordan Miller from the University of Stirling.Peer reviewedPublisher PD

Trials and Tribulations: when academic research and public health worlds collide

First paragraph: Three years ago, we received funding to develop, trial and evaluate a series of interventions to promote attendance at Bowel Scope Screening (BSS) in Hull, Yorkshire, UK (McGregor et al., 2018). The last of these interventions has now been delivered and in just a couple of months we will receive NHS data (from the Bowel Cancer Screening Programme) which will tell us how successful each intervention has been. While we await the results, we reflect on our trial experience and the difficulties faced in pursuit of improving public health

Trials and Tribulations: when academic research and public health worlds collide

First paragraph: Three years ago, we received funding to develop, trial and evaluate a series of interventions to promote attendance at Bowel Scope Screening (BSS) in Hull, Yorkshire, UK (McGregor et al., 2018). The last of these interventions has now been delivered and in just a couple of months we will receive NHS data (from the Bowel Cancer Screening Programme) which will tell us how successful each intervention has been. While we await the results, we reflect on our trial experience and the difficulties faced in pursuit of improving public health

Uptake of the English Bowel (Colorectal) Cancer Screening Programme: an update 5 years after the full roll-out

Background The initial roll-out of the English Bowel (Colorectal) Cancer Screening programme, during 2006 and 2009, found uptake to be low (54%) and socially graded. The current analysis used data from 2010 to 2015 to test whether uptake is increasing and becoming less socially graded over time. Methods Postcode-derived area-level uptake of 4.4 million first-time invitees, stratified by gender and the year of the first invitation (2010–2015), was generated using the National Bowel Cancer Screening System. Data were limited to people aged 60–64 years. Binomial regression tested for variations in uptake by the year of invitation, gender, region, area-based socio-economic deprivation and area-based ethnic diversity. Results Overall, the first-time colorectal cancer (CRC) screening uptake across 6 years was 52% (n = 2,285,996/4,423,734) with a decline between 2010 and 2015 (53%, 54%, 52%, 50%, 49%, 49% respectively). Uptake continued to be socially graded between the most and the least deprived area-level socio-economic deprivation quintiles (43% vs 57%), the most and the least area-based ethnic diversity quintiles (41% vs 56%) and men and women (47% vs 56%). Multivariate analysis demonstrated the effects of year, deprivation, ethnicity and gender on uptake. The effect of deprivation was more pronounced in the most deprived area quintile between men and women (40% vs 47%) than the least deprived area quintile (52% vs 62% respectively). Conclusion We did not find evidence of change in uptake patterns in CRC screening since its initial launch 10 years ago. The programme is unlikely to realise its full public health benefits and is en route to widening inequalities in CRC outcomes

Persuasion, Adaptation, and Double Identity: Qualitative Study on the Psychological Impact of a Screen-Detected Colorectal Cancer Diagnosis

The NHS Bowel Cancer Screening Programme (BCSP) is aimed at reducing colorectal cancer (CRC) mortality through early detection within a healthy population. This study explores how 5 people (three females) experience and make sense of their screen-detected diagnosis and the psychological implications of this diagnostic pathway. A biographical narrative interview method was used, and transcripts were analysed using a thematic analysis with a phenomenological lens. Themes specifically relating to posttreatment experience and reflections are reported here: Do it: being living proof, Resisting the threat of recurrence, Rationalising bodily change, and Continuing life—“carrying on normally.” Participants described their gratefulness to the BCSP, motivating a strong desire to persuade others to be screened. Furthermore, participants professed a duality of experience categorised by the normalisation of life after diagnosis and treatment and an identification of strength post cancer, as well as a difficulty adjusting to the new changes in life and a contrasting identity of frailty. Understanding both the long- and short-term impacts of a CRC diagnosis through screening is instrumental to the optimisation of support for patients. The results perhaps highlight a particular target for psychological distress reduction, which could reduce the direct and indirect cost of cancer to the patient

Considering adult living donor liver transplantation: a qualitative study of patients and their potential donors

In April 2006, the Scottish Liver Transplant Unit became the first NHS transplant unit in the UK to offer adult Living Donor Liver Transplantation (LDLT). However, within the first 21 months of its availability, no patients on the transplant waiting list had pursued this treatment option. A qualitative interview study was devised to elicit the views of patients and their families with regards to LDLT. Interviews were conducted with 21 patients and 20 potential donors. The main reason why recipients did not pursue LDLT was their perception of risk to their donor. The anticipated feelings of guilt if the donor was harmed, resulted in LDLT being rejected. However, despite this many recipients would possibly consider LDLT as a “last option”. For donors, considering becoming a donor was an automatic response, driven by their need to help their loved one survive. However, consideration of the effects of donating upon their own immediate family often superseded their wish to donate. Whilst donors need to be given time to consider the implications of LDLT upon their own lives, it is essential that recipients understand that LDLT cannot be a last option, in order to allow them to reconsider their options realistically

Evaluation of the Call for a Kit intervention to increase bowel cancer screening uptake in Lancashire, England

Objective: To evaluate the ‘Call for a Kit’ health promotion intervention that was initiated in Lancashire, England to improve bowel cancer screening uptake. Methods: Within the intervention, screening non-responders are called and invited to attend a consultation with a health promotion team member at their primary care practice. In this audit, we analysed the proportion of those contacted who attended the in-person clinic versus those who received a phone consultation, the number returning a test kit from in-person versus phone consultations, and the extent to which test kit return was moderated by sociodemographic characteristics. Results: In 2019, 68 practices participated in the intervention which led to 10,772 individuals being contacted; 2464 accepted the invitation to an in-person consultation, of whom 1943 attended. A further 1065 agreed to and attended a consultation over the phone. The 3008 consultations resulted in 2890 test kits being ordered, of which 1608 (55.6%) were returned. The intervention therefore yielded a 14.9% response rate in the total cohort; 71.5% of test kits came from individuals attending the in-person consultation. Women and those registered with a practice in socioeconomically deprived areas were less likely to return the test kit. Individuals with a black, mixed or a non-Indian/Pakistani Asian ethnic background were significantly more likely to accept the offer of an in-person consultation and return the test kit. Conclusion: Our analysis demonstrated the strong likelihood of people returning a test kit after an in-person appointment but also the usefulness of using phone consultations as a safety net for people unable or unwilling to attend in-person clinics