The impact of engaging with community groups: asset-based approaches and the lived experience of socially vulnerable populations in the UK.

Introduction: Asset-based approaches to improve citizen wellbeing and address inequalities are now being adopted by public health practitioners. There is some evidence that participatory approaches and the promotion of community assets have the capacity to mitigate against the social determinants that generate health disparities. However, questions remain about how they work in practice. This paper reports on research carried out to provide insight into how a diverse range of community assets support (or not) the wellbeing of vulnerable citizens and to provide an improved understanding of people's lived experiences including the challenges of citizens who belong to community assets face. Two subsequent studies were undertaken in a region of England comprising of two neighboring municipalities where health inequalities are stark. Both municipalities contain within them areas of social deprivation. The initial study was completed in March 2020, 1 week before England's first COVID-19 lockdown restrictions were introduced and the subsequent study was conducted to explore the impact of social restrictions on the community assets forum members. Methods: A combined phenomenological and ethnographic methodological approach was adopted for both studies. For the initial study ethnographic methods were used including 42 qualitative face-to-face interviews focusing on the lived experience of participants. Observations, informal conversations, photographs, and field notes were also carried out to allow researchers to become familiar with the setting, to build rapport and trust provide a contextual understanding of the relationship between the activity or place and participants' experiences of wellbeing. For the subsequent study thirty-six interviews (including interviews with community assets leaders) were conducted online or by phone due to COVID-19 social restrictions. Results and discussion: The studies' findings support the supposition that these groups are community assets which help ameliorate against the social detriments of health and wellbeing that have led to widening health inequalities in the region. The findings from both studies clearly illustrate the importance of sociality for wellbeing, and that participation in these groups are an important determinant of wellbeing. The data demonstrates how social capital is generated within a range of community groups and spaces. It also conveys the needs and deficits existing within groups highlighting the need to provide more assistance to vulnerable citizens. While most themes were common to all community forums, there were some noticeable place-based differences.

Extraordinary normalcy: Home, relationships and identities in narratives of unpaid care.

Based on audio diaries and narrative interviews with family carers, this paper suggests care can be understood as an experience of 'extraordinary normalcy', meaning that profound shifts in home, relationships and identities take place whilst caring, yet these become part of the normalcy of family life. To maintain and understand a sense of normalcy, our participants utilise professional and technological interventions in the home and draw on notions of responsibility, reciprocity and role-reversal as frameworks for explaining why they continue to care, despite the challenges it brings. The paper considers how domestic activities performed in the home can both highlight the extraordinary aspects of care and help maintain the normalcy of the everyday. Extraordinary normalcy is a concept that problematises definitions of care that remove it from the relational and everyday, yet acknowledges the challenges people face when performing care. This paper contributes to a call for a narrative based development of social policy and makes recommendations for policy and practice based on the in-depth accounts of family carers.

Towards a Moral Ecology of Pharmacological Cognitive Enhancement in British Universities.

Few empirical studies in the UK have examined the complex social patterns and values behind quantitative estimates of the prevalence of pharmacological cognitive enhancement (PCE). We conducted a qualitative investigation of the social dynamics and moral attitudes that shape PCE practices among university students in two major metropolitan areas in the UK. Our thematic analysis of eight focus groups (n = 66) suggests a moral ecology that operates within the social infrastructure of the university. We find that PCE resilience among UK university students is mediated by normative and cultural judgments disfavoring competitiveness and prescription drug taking. PCE risk can be augmented by social factors such as soft peer pressure and normalization of enhancement within social and institutional networks. We suggest that moral ecological dynamics should be viewed as key mechanisms of PCE risk and resilience in universities. Effective PCE governance within universities should therefore attend to developing further understanding of the moral ecologies of PCE.

The Experience of Transitional Care for Non-Medically Complex Older Adults and Their Family Caregivers.

Transitional care research has mainly focused on the experiences of older adults with complex medical conditions. To date, few publications examine the experience of transitional care for non-medically complex older adults. In this article, we draw on and thematically analyze interview and audio-diary data collected at three hospitals in Eastern England, and we explore the experience of transitional care of 18 older adults and family caregivers. Participants reported mixed experiences when describing their care transitions, which indicated variations in care quality. To achieve independence and overcome the difficulties with care transitions, participants used a range of interrogative techniques, such as questioning and information seeking. We contend that the existing transitional care interventions are inappropriate to address the care needs of non-medically complex older adults and family caregivers. Implications for frontline health care staff and health services researchers are discussed.

The diagnosis and lived experience of polycystic ovary syndrome: A qualitative study.

AIMS: To explore the impact of the diagnosis of polycystic ovary syndrome on health/ill health identity, how women experience this diagnosis and their health beliefs. BACKGROUND: Polycystic ovary syndrome is a common and heterogeneous condition, giving rise to a wide range of different health concerns. Previous research on polycystic ovary syndrome has been dominated by the medical perspective and less is known about the experiences and needs of women. DESIGN: A qualitative study of 32 premenopausal adult women with polycystic ovary syndrome (diagnosis confirmed by Rotterdam criteria), aged between 18 and 45 years, recruited from a primary and secondary care setting. METHODS: Thematic analysis of transcripts from 11 focus groups conducted between 2013-2015. RESULTS/FINDINGS: Women identified a range of concerns affecting personal and reproductive identity, health knowledge and beliefs: (1) delays and barriers to diagnosis; (2) general lack of empathy by the medical profession; (3) difficulty in accessing specialist referral; (4) lack of information from professionals; (5) inconsistent and sometimes unsatisfactory experiences with medications; (6) insufficient help and advice regarding in/fertility; (7) relative lack of awareness or concern about longer term risks such as diabetes; and (8) significant discrepancies between the beliefs of women with polycystic ovary syndrome and how they experienced the attitudes of healthcare professionals. CONCLUSIONS: There appears to be a divergence between women's experience and attitudes of healthcare professionals. The diagnosis, support and lived experience of women with polycystic ovary syndrome could be enhanced by better professional recognition of these concerns, improved knowledge and communication about polycystic ovary syndrome and better access to support and specialist advice.

"No one has yet properly articulated what we are trying to achieve": a discourse analysis of interviews with revalidation policy leaders in the United Kingdom.

PURPOSE: To analyze prevailing definitions of revalidation (i.e., a recently instituted system of ongoing review for all physicians in the United Kingdom), the circumstances of their origin, and proposed applications, after a protracted and sometimes difficult decade in development. This was to support a more consensual approach to revalidation policy before its launch in 2012. METHOD: In 2010 and 2011, the authors carried out a critical discourse analysis of interviews with 31 medical and legal revalidation policy makers. These individuals represented the main stakeholder bodies, including the General Medical Council, Academy of Medical Royal Colleges, British Medical Association, National Health Service Employers, and the departments of health from across the United Kingdom. RESULTS: The authors identified two overarching discourses: regulation and professionalism, held together by patients as "discursive glue." Regulation frames revalidation as a way to identify "bad apples," requiring a summative approach and minimum standards. Professionalism looks to revalidation as a process by which all doctors improve, requiring evolving standards and a developmental model. CONCLUSIONS: These two discourses were not mutually exclusive; indeed, most interviewees used them interchangeably. However, they are in some regards at odds. Their coexistence has been supported by a shared discursive formation around patients. Yet the authors found little patient-centered policy in revalidation in its current form. The authors concluded that patients need to be recognized, making them present with an active voice. They also stressed the importance of established and ongoing evaluation of medical regulation as a policy and process.

Trust in the health-care provider-patient relationship: a systematic mapping review of the evidence base.

PURPOSE: Trust is important for patients and may be used as an indicator and potential 'marker' for how patients evaluate the quality of health care. The review aimed to classify the current evidence base on trust in the patient-provider relationship in order to identify strengths and weaknesses and to point towards areas for future research. DATA SOURCES: Nine electronic databases were searched from 2004 onwards using text and subject heading keywords relating to 'trust' and 'health care' and 'relationships'. STUDY SELECTION: Abstracts were identified for empirical studies carried out in health-care settings that explicitly examined trust or reported trust-related findings as a secondary outcome. Data extraction Two review authors assessed the relevance of abstracts and extracted data relating to year published, country of study, clinical speciality, STUDY DESIGN: and participants. RESULTS OF DATA SYNTHESIS: Five hundred and ninety-six abstracts were included. Most reported on patients' trust in providers; were carried out in the USA; collected data in family care or oncology/palliative care settings; used questionnaires and interviews and elicited patients' perspectives. Only one study explicitly set out to examine providers' trust in patients and <5% of included studies reported on providers' trust in patients. CONCLUSION: Providers' trust in patients remains a neglected area on the trust research agenda. Empirical studies examining the factors that influence providers' trust in patients and how this might affect the quality of care and patient health-related behaviours are urgently needed to readdress this imbalance. Further exploration of this area using observational methods is recommended.

The changing landscape of medical education in the UK.

The UK shares many characteristics with other western developed countries, including a current adherence to the view that defining educational outcomes enables improvements in learning and teaching and a more effective management of the learning and assessment process. There are, however, some features that make UK medical education unique or that give it a distinctive flavour. This article looks at the various forces that shape medical education in the UK and the structures that underpin its delivery, and discusses the distinctive climate that is produced, in which doctors, students and medical teachers are expected to work. We examine and assess these special features of UK medical education and report on the ways in which medical education and medical educators are adapting to the complex and constantly changing environment. We conclude that the healthcare and higher education systems in the UK face unprecedented economic and political challenges over the coming years. Medical educators working within these systems have an important role in ensuring that these challenges are met and that standards are maintained and improved. A stronger professional architecture to support careers in medical education is needed to ensure that those involved in teaching medical students and doctors have the necessary training, time, resources and incentives to do it effectively.

The transition from medical student to junior doctor: today's experiences of Tomorrow's Doctors.

CONTEXT Medical education in the UK has recently undergone radical reform. Tomorrow's Doctors has prescribed undergraduate curriculum change and the Foundation Programme has overhauled postgraduate education. OBJECTIVES This study explored the experiences of junior doctors during their first year of clinical practice. In particular, the study sought to gain an understanding of how junior doctors experienced the transition from the role of student to that of practising doctor and how well their medical school education had prepared them for this. METHODS The study used qualitative methods comprising of semi-structured interviews and audio diary recordings with newly qualified doctors based at the Peninsula Foundation School in the UK. Purposive sampling was used and 31 of 186 newly qualified doctors self-selected from five hospital sites. All 31 participants were interviewed once and 17 were interviewed twice during the year. Ten of the participants also kept audio diaries. Interview and audio diary data were transcribed verbatim and thematically analysed with the aid of a qualitative data analysis software package. RESULTS The findings show that, despite recent curriculum reforms, most participants still found the transition stressful. Dealing with their newly gained responsibility, managing uncertainty, working in multi-professional teams, experiencing the sudden death of patients and feeling unsupported were important themes. However, the stress of transition was reduced by the level of clinical experience gained in the undergraduate years. CONCLUSIONS Medical schools need to ensure that students are provided with early exposure to clinical environments which allow for continuing 'meaningful' contact with patients and increasing opportunities to 'act up' to the role of junior doctor, even as students. Patient safety guidelines present a major challenge to achieving this, although with adequate supervision the two aims are not mutually exclusive. Further support and supervision should be made available to junior doctors in situations where they are dealing with the death of a patient and on surgical placements.

Pharmacogenetics: the bioethical problem of DNA investment banking.

Concern about the ethics of clinical drug trials research on patients and healthy volunteers has been the subject of significant ethical analysis and policy development--protocols are reviewed by Research Ethics Committees and subjects are protected by informed consent procedures. More recently attention has begun to be focused on DNA banking for clinical and pharmacogenetics research. It is, however, surprising how little attention has been paid to the commercial nature of such research, or the unique issues that present when subjects are asked to consent to the storage of biological samples. Our contention is that in the context of pharmacogenetic add-on studies to clinical drug trials, the doctrine of informed consent fails to cover the broader range of social and ethical issues. Applying a sociological perspective, we foreground issues of patient/subject participation or 'work', the ambiguity of research subject altruism, and the divided loyalties facing many physicians conducting clinical research. By demonstrating the complexity of patient and physician involvement in clinical drug trials, we argue for more comprehensive ethical review and oversight that moves beyond reliance on informed consent to incorporate understandings of the social, political and cultural elements that underpin the diversity of ethical issues arising in the research context.

Rhetoric and hype: where's the 'ethics' in pharmacogenomics?

There is increasing discussion in public and academic forums about the anticipated benefits of pharmacogenomics, as well as the attendant social and ethical implications of this research. Yet there is often an implicit assumption that the benefits of pharmacogenomics are 'just around the corner' and will significantly outweigh the costs. Furthermore, it is argued that the associated ethical issues are not as profound as those that emerge in other areas of genetics, and that experience gained wrestling with these other issues provides ample ethical and regulatory tools to deal with any problems arising with pharmacogenomics. We contend that this vision of ethical and social issues associated with pharmacogenomics is not so clear-cut. The scientific evidence is more complex and contested than the public, academics, and policy makers, have been led to believe, and while there may be real clinical benefits from this research, they are not likely to arrive in the near future. Pharmacogenomics research is also occurring in a terrain occupied by a multitude of different and powerful actors, with diverse and often competing interests. It is therefore essential to investigate the broader social and political context, unravel the various interests pressuring for early implementation, and deconstruct the hype in order to appreciate a fuller range of ethical and social consequences associated with the current developments of pharmacogenomics.

Empty ethics: the problem with informed consent.

Informed consent is increasingly heralded as an ethical panacea, a tool to counter autocratic and paternalistic medical practices. Debate about the implementation of informed consent is constricted and polarised, centring on the right of individuals to be fully informed and to freely choose versus an autocratic, paternalistic practice that negates individual choice. A bioethical framework, based on a principle-led form of reductive/deductive reasoning, dominates the current model of informed consent. Such a model tends to abstract the process of consent from its clinical and social setting. By fleshing out the social process involved whe patients and healthy volunteer subjects consent to take part in clinical drug trials, this paper attempts to address the problem arising from the current 'empty ethics' model. My arguments are substantiated by qualitative interview data drawn from a study I conducted on the process of consent as experienced by participants in clinical drug trials.

A risky business: the detection of adverse drug reactions in clinical trials and post-marketing exercises.

While it is widely acknowledged by epidemiologists, pharmacologists and physicians that adverse drug reactions (ADRs) occur with considerable frequency, within the realm of medical sociology, drug-induced risk currently receives little critical attention. This paper looks into this medical scientific 'black box' to present a comprehensive account of the epistemological and political processes at play in the detection of ADRs. By focusing on the literature generated by pharmacologists, epidemiologists and others working in the field, this paper examines the various techniques and methods used to identify and calculate ADRs both during clinical drug trials and beyond. Although risk associated with drug consumption is often presented as a scientifically calculable objective phenomenon, the attribution of causal mechanisms in determining whether the drug has caused an adverse event is a highly contingent social process, often involving complex clinical judgements. During clinical trials, variables are controlled and exclusions are imposed in order to fulfil scientific protocol requirements. These exclusionary practices mean that major patient population groups such as women and the elderly are often underrepresented during the trial process. At the time a drug product license is granted many uncertainties exist about the risk of ADRs. Once a drug is in widespread use, a more comprehensive profile of risk may begin to emerge. However, given that in everyday use drugs can interact with other drugs, alcohol and even certain foods and that drug reactions can mimic the disease they are supposed to be treating, differentiating between 'signal' and 'noise' is a messy, contingent complex process.