Publications by category
Journal articles
Mattick K, Goulding A, Carrieri D, Brennan N, Burford B, Vance G, Dornan T (2023). Constraints and affordances for UK doctors-in-training to exercise agency: a dialogical analysis.
Med EducAbstract:
Constraints and affordances for UK doctors-in-training to exercise agency: a dialogical analysis.
INTRODUCTION: the goal of medical education is to develop clinicians who have sufficient agency (capacity to act) to practise effectively in clinical workplaces and to learn from work throughout their careers. Little research has focused on experiences of organisational structures and the role of these in constraining or affording agency. The aim of this study was to identify priorities for organisational change, by identifying and analysing key moments of agency described by doctors-in-training. METHODS: This was a secondary qualitative analysis of data from a large national mixed methods research programme, which examined the work and wellbeing of UK doctors-in-training. Using a dialogical approach, we identified 56 key moments of agency within the transcripts of 22 semi-structured interviews with doctors based across the UK in their first year after graduation. By analysing action within the key moments from a sociocultural theoretical perspective, we identified tangible changes that healthcare organisations can make to afford agency. RESULTS: When talking about team working, participants gave specific descriptions of agency (or lack thereof) and used adversarial metaphors, but when talking about the wider healthcare system, their dialogue was disengaged and they appeared resigned to having no agency to shape the agenda. Organisational changes that could afford greater agency to doctors-in-training were improving induction, smoothing peaks and troughs of responsibility and providing a means of timely feedback on patient care. CONCLUSIONS: Our findings identified some organisational changes needed for doctors-in-training to practise effectively and learn from work. The findings also highlight a need to improve workplace-based team dynamics and empower trainees to influence policy. By targeting change, healthcare organisations can better support doctors-in-training, which will ultimately benefit patients.
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Burford B, Mattick K, Carrieri D, Goulding A, Gale T, Brennan N, Vance G (2023). How is transition to medical practice shaped by a novel transitional role? a mixed-methods study.
BMJ Open,
13(8), e074387-e074387.
Abstract:
How is transition to medical practice shaped by a novel transitional role? a mixed-methods study
ObjectivesThis study considered a novel ‘interim’ transitional role for new doctors (termed ‘FiY1’, interim Foundation Year 1), bridging medical school and Foundation Programme (FP). Research questions considered effects on doctors’ well-being and perceived preparedness, and influences on their experience of transition. While FiY1 was introduced in response to the COVID-19 pandemic, findings have wider and ongoing relevance.DesignA sequential mixed-methods study involved two questionnaire phases, followed by semi-structured interviews. In phase 1, questionnaires were distributed to doctors in FiY1 posts, and in phase 2, to all new FP doctors, including those who had not undertaken FiY1.Setting and participantsParticipants were newly qualified doctors from UK medical schools, working in UK hospitals in 2020. 77% (n=668) of all participants across all phases had undertaken FiY1 before starting FP in August. The remainder started FP in August with varying experience beforehand.Outcome measuresQuestionnaires measured preparedness for practice, stress, anxiety, depression, burnout, identity, and tolerance of ambiguity. Interviews explored participants’ experiences in more depth.ResultsAnalysis of questionnaires (phase 1 n=441 FiY1s, phase 2 n=477 FiY1s, 196 non-FiY1s) indicated that FiY1s felt more prepared than non-FiY1 colleagues for starting FP in August (β=2.71, 95% CI=2.21 to 3.22, p<0.0001), which persisted to October (β=1.85, CI=1.28 to 2.41, p<0.0001). Likelihood of feeling prepared increased with FiY1 duration (OR=1.02, CI=1.00 to 1.03, p=0.0097). Despite challenges to well-being during FiY1, no later detriment was apparent. Thematic analysis of interview data (n=22) identified different ways, structural and interpersonal, in which the FiY1 role enhanced doctors’ emerging independence supported by systems and colleagues, providing ‘supported autonomy’.ConclusionsAn explicitly transitional role can benefit doctors as they move from medical school to independent practice. We suggest that the features of supported autonomy are those ofinstitutionalised liminality—a structured role ‘betwixt and between’ education and practice—and this lens may provide a guide to optimising the design of such posts.
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Sakaguchi T, Tokutomi T, Yoshida A, Yamamoto K, Obata K, Carrieri D, Kelly SE, Fukushima A (2023). Recontact: a survey of current practices and BRCA1/2 testing in Japan. Journal of Human Genetics, 68(8), 551-557.
Carrieri D, Peccatori FA, Boniolo G (2023). The Oncohumanities training programme: Fostering a deeper engagement and integration of oncology and humanities to tackle the pressing and complex challenges of cancer care.
Tumori Journal,
109(3), 258-261.
Abstract:
The Oncohumanities training programme: Fostering a deeper engagement and integration of oncology and humanities to tackle the pressing and complex challenges of cancer care
‘Oncohumanities’ is a new field of oncology and humanities which integrates a rich gamut of humanity disciplines and oncological expertise to tackle patients’ real needs and priorities. To promote knowledge and awareness on this topic, we propose a training programme that will blend conceptual knowledge underpinning oncology practice with and person-centred care based on the humanisations of care, on empowerment of patients, and on respect for their diversities. Oncohumanities differs from most existing medical humanities training as it is integrated and engaged with oncology (rather than an add-on). This means that its agenda is driven by the real needs and priorities arising out of daily oncological practice. It is our hope that this new Oncohumanities programme and approach will contribute to guiding future efforts to foster a strong integrated partnership between humanities and oncology.
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Uys C, Carrieri D, Mattick K (2023). The impact of shared social spaces on the wellness and learning of junior doctors: a scoping review.
Med Educ,
57(4), 315-330.
Abstract:
The impact of shared social spaces on the wellness and learning of junior doctors: a scoping review.
INTRODUCTION: Impaired wellness among junior doctors is a significant problem. Connectedness and sense of belonging may be important factors to prevent and reduce mental ill-health. Shared social spaces in which health care staff can meet informally are thought to improve connectedness; however, these spaces are in decline. It is unclear what is known about such spaces, how they are used, and their impact on wellness and learning. This study aims to identify and synthetise available literature that informs our current understanding of the nature of shared social spaces as an intervention impacting wellness and learning of junior doctors. METHODS: a scoping review was conducted following the Arksey and O'Malley five-step framework. The review question is 'What is the evidence of the impact of shared social spaces on wellness and learning of junior doctors?' We searched five databases: MEDLINE, EMBASE, APA PsychINFO, APA PsychExtra, and ERIC. We conducted thorough supplementary searches in addition to the database search. RESULTS: We included 41 articles. These were predominantly letters, commentaries, and editorials with only five primary research studies. We identified four significant common attributes of shared social spaces, which can be credited with positive impacts on wellness and learning: (1) Informal: fostering connectedness and belonging, trust and teamwork and offering access to informal help and support; (2) safe: allowing reflection, debrief and raising of concerns; (3) functional: there is planning of clinical care activity, sense of control and engagement from users and provision of refreshment; (4) legitimate: regular maintenance and use of shared social spaces affect role modelling, sustainability and wellness culture. DISCUSSION: This review identified several ways in which shared social spaces impact positively on learning and wellness. There is little primary research in this area. Future research would be useful to further examine how and why this works.
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Skinner A, Tester-Jones MC, Carrieri D (2023). Undernutrition among children living in refugee camps: a systematic review of prevalence.
BMJ Open,
13(6), e070246-e070246.
Abstract:
Undernutrition among children living in refugee camps: a systematic review of prevalence
ObjectivesThis review aimed to provide an overview of the prevalence of undernutrition in children under 5 years old in refugee camps according to the different indicators. In addition, we aimed to evaluate the quality and quantity of relevant epidemiological data available.DesignWe used a systematic review of prevalence study design to achieve the above aims. We sought eligible observational studies through database searching of OVID Medline, CAB Global Health, Scopus and PubMed; citation chasing; and grey literature searching.SettingThe setting of interest was refugee camps across the globe.ParticipantsParticipants in the studies included in the review were children under 5 years old.Primary and secondary outcome measuresOutcome measures of interest were the prevalence of wasting, global acute malnutrition, stunting and underweight.ResultsThe review included 33 cross-sectional studies in 86 sites and a total of 36 750 participants. Overall, the quality of the studies was moderate to high, but some reports lacked clarity around data collection or outcome definitions. The results showed a wide variation in prevalence estimates across the different indicators and between different refugee camps. The median prevalence estimates of global acute malnutrition based on weight-for-height z-score, stunting and underweight were 7.1%, 23.8% and 16.7%, respectively. Using weight-for-height z-score identified a higher prevalence of acute malnutrition than using mid-upper arm circumference in the majority of studies.ConclusionsAcute malnutrition remains a public health problem in many refugee camps, but chronic malnutrition has a high prevalence in more locations. Research and policy must, therefore, focus not only on nutrition but also on the wider determinants of both acute and chronic undernutrition. The difference in prevalence of global acute malnutrition depending on the measure used has implications for screening and diagnosis.
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Fotsing S, Tohme A, Bekolo G, Mathieu J, Cheema H, Sibbald D, Sweezey A, Ahmed K, Joy T, Sukhera J, et al (2022). Canadian Conference on Medical Education 2022 abstracts. Canadian Medical Education Journal, 13(2), 105-251.
Lock FK, Carrieri D (2022). Factors affecting the UK junior doctor workforce retention crisis: an integrative review.
BMJ Open,
12(3), e059397-e059397.
Abstract:
Factors affecting the UK junior doctor workforce retention crisis: an integrative review
ObjectivesTo determine the factors contributing to the junior doctor workforce retention crisis in the UK using evidence collected directly from junior doctors, and to develop recommendations for changes to address the issue.DesignIntegrative review.Data sourcesSearches were conducted on Ovid Medline and HMIC to locate evidence published between January 2016 and April 2021. This was supplemented by publications from relevant national organisations.Eligibility criteriaEnglish-language papers relating to UK junior doctor retention, well-being or satisfaction which contained data collected directly from junior doctors were included. Papers focusing solely on the pandemic, factors specific to one medical specialty, evaluation of interventions, or numerical data with no evidence relating to causation were excluded. Review papers were excluded.Data extraction and synthesisData were extracted and coded on NVivo by FKL, then thematic analysis was conducted.Results47 papers were included, consisting of academic (qualitative, quantitative, mixed and commentary) and grey literature. Key themes identified were working conditions, support and relationships, and learning and development, with an overarching theme of lack of flexibility. The outcomes of these factors are doctors not feeling valued, lacking autonomy, having a poor work–life balance, and providing compromised patient care. This results in need for a break from medical training.ConclusionThis review builds on findings of related literature regarding working environments, isolation, stigma, and desire for autonomy, and highlights additional issues around learning and training, flexibility, feeling valued, and patient care. It goes on to present recommendations for tackling poor retention of UK junior doctors, highlighting that the complex problem requires evidence-based solutions and a bottom-up approach in which junior doctors are regarded as core stakeholders during the planning of interventions.
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Taylor C, Mattick K, Carrieri D, Cox A, Maben J (2022). ‘The WOW factors’: comparing workforce organization and well-being for doctors, nurses, midwives and paramedics in England.
British Medical Bulletin,
141(1), 60-79.
Abstract:
‘The WOW factors’: comparing workforce organization and well-being for doctors, nurses, midwives and paramedics in England
AbstractBackgroundHigh rates of poor mental health in healthcare staff threatens the quality and sustainability of healthcare delivery. Multi-factorial causes include the nature and structure of work. We conducted a critical review of UK NHS (England) data pertaining to: doctors, nurses, midwives and paramedics.Sources of dataKey demographic, service architecture (structural features of work) and well-being indicators were identified and reviewed by a stakeholder group. Data searching prioritized NHS whole workforce sources (focusing on hospital and community health services staff), which were rated according to strength of evidence.FindingsKey differences between professions were: (i) demographics: gender (nursing and midwifery female-dominated, doctors and paramedics more balanced); age (professions other than doctors had ageing workforces); ethnicity (greater diversity among doctors and nurses); (ii) service architecture: despite net staffing growth, turnover and retention were problematic in all professions; 41.5% doctors were consultants but smaller proportions held high grade/band roles in other professions; salaries were higher for doctors; (iii) well-being: all reported high job stress, particularly midwives and paramedics; sickness absence rates for nurses, midwives and paramedics were three times those of doctors, and presenteeism nearly double.Growing pointsSociocultural factors known to increase risk of poor mental health may explain some of the differences reported between professions. These factors and differences in service architecture are vital considerations when designing strategies to improve well-being.Areas timely for developing researchMulti-level systems approaches to well-being are required that consider intersectionality and structural differences between professions; together with inter-professional national databases to facilitate monitoring.
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Carrieri D, Peccatori FA, Boniolo G (2020). COVID-19: a plea to protect the older population. International Journal for Equity in Health, 19(1).
Carrieri D, Pearson M, Mattick K, Papoutsi C, Briscoe S, Wong G, Jackson M (2020). Interventions to minimise doctors’ mental ill-health and its impacts on the workforce and patient care: the Care Under Pressure realist review.
Health Services and Delivery Research,
8(19), 1-132.
Abstract:
Interventions to minimise doctors’ mental ill-health and its impacts on the workforce and patient care: the Care Under Pressure realist review
. Background
. The growing incidence of mental ill-health in health professionals, including doctors, is a global concern. Although a large body of literature exists on interventions that offer support, advice and/or treatment to sick doctors, it has not yet been synthesised in a way that takes account of the complexity and heterogeneity of the interventions, and the many dimensions (e.g. individual, organisational, sociocultural) of the problem.
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. Objectives
. Our aim was to improve understanding of how, why and in what contexts mental health services and support interventions can be designed to minimise the incidence of doctors’ mental ill-health. The objectives were to review interventions to tackle doctors’ mental ill-health and its impact on the clinical workforce and patient care, drawing on diverse literature sources and engaging iteratively with diverse stakeholder perspectives to produce actionable theory; and recommendations that support the tailoring, implementation, monitoring and evaluation of contextually sensitive strategies to tackle mental ill-health and its impacts.
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. Design
. Realist literature review consistent with the Realist and Meta-narrative Evidence Syntheses: Evolving Standards quality and reporting standards.
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. Data sources
. Bibliographic database searches were developed and conducted using MEDLINE (1946 to November week 4 2017), MEDLINE In-Process and Other Non-indexed Citations (1946 to 6 December 2017) and PsycINFO (1806 to November week 2 2017) (all via Ovid) and Applied Social Sciences Index and Abstracts (1987 to 6 December 2017) (via ProQuest) on 6 December 2017. Further UK-based studies were identified by forwards and author citation searches, manual backwards citation searching and hand-searching relevant journal websites.
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. Review methods
. We included all studies that focused on mental ill-health; all study designs; all health-care settings; all studies that included medical doctors/medical students; descriptions of interventions or resources that focus on improving mental ill-health and minimising its impacts; all mental health outcome measures, including absenteeism (doctors taking short-/long-term sick leave); presenteeism (doctors working despite being unwell); and workforce retention (doctors leaving the profession temporarily/permanently). Data were extracted from included articles and the data set was subjected to realist analysis to identify context–mechanism–outcome configurations.
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. Results
. A total of 179 out of 3069 records were included. Most were from the USA (45%) and had been published since 2009 (74%). More included articles focused on structural-level interventions (33%) than individual-level interventions (21%), but most articles (46%) considered both levels. Most interventions focused on prevention, rather than treatment/screening, and most studies referred to doctors/physicians in general, rather than to specific specialties or career stages. Nineteen per cent of the included sources provided cost information and none reported a health economic analysis. The 19 context–mechanism–outcome configurations demonstrated that doctors were more likely to experience mental ill-health when they felt isolated or unable to do their job, and when they feared repercussions of help-seeking. Healthy staff were necessary for excellent patient care. Interventions emphasising relationships and belonging were more likely to promote well-being. Interventions creating a people-focused working culture, balancing positive/negative performance and acknowledging positive/negative aspects of a medical career helped doctors to thrive. The way that interventions were implemented seemed critically important. Doctors needed to have confidence in an intervention for the intervention to be effective.
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. Limitations
. Variable quality of included literature; limited UK-based studies.
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. Future work
. Use this evidence synthesis to refine, implement and evaluate interventions.
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. Study registration
. This study is registered as PROSPERO CRD42017069870.
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. Funding
. This project was funded by the National Institute for Health Research (NIHR) Health Services and Delivery Research programme and will be published in full in Health Services and Delivery Research; Vol. 8, No. 19. See the NIHR Journals Library website for further project information.
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Carrieri D, Mattick K, Pearson M, Papoutsi C, Briscoe S, Wong G, Jackson M (2020). Optimising strategies to address mental ill-health in doctors and medical students: 'Care Under Pressure' realist review and implementation guidance.
BMC Med,
18(1).
Abstract:
Optimising strategies to address mental ill-health in doctors and medical students: 'Care Under Pressure' realist review and implementation guidance.
BACKGROUND: Mental ill-health in health professionals, including doctors, is a global and growing concern. The existing literature on interventions that offer support, advice and/or treatment to sick doctors has not yet been synthesised in a way that considers the complexity and heterogeneity of the interventions, and the many dimensions of the problem. We (1) reviewed interventions to tackle doctors' and medical students' mental ill-health and its impacts on the clinical workforce and patient care-drawing on diverse literature sources and engaging iteratively with diverse stakeholder perspectives-and (2) produced recommendations that support the tailoring, implementation, monitoring and evaluation of contextually sensitive strategies to tackle mental ill-health and its impacts. METHODS: Realist literature review consistent with the RAMESES quality and reporting standards. Sources for inclusion were identified through bibliographic database searches supplemented by purposive searches-resulting also from engagement with stakeholders. Data were extracted from included articles and subjected to realist analysis to identify (i) mechanisms causing mental ill-health in doctors and medical students and relevant contexts or circumstances when these mechanisms were likely to be 'triggered' and (ii) 'guiding principles' and features underpinning the interventions and recommendations discussed mostly in policy document, reviews and commentaries. RESULTS: One hundred seventy-nine records were included. Most were from the USA (45%) and were published since 2009 (74%). The analysis showed that doctors were more likely to experience mental ill-health when they felt isolated or unable to do their job and when they feared repercussions of help-seeking. Healthy staff were necessary for excellent patient care. Interventions emphasising relationships and belonging were more likely to promote wellbeing. Interventions creating a people-focussed working culture, balancing positive/negative performance and acknowledging positive/negative aspects of a medical career helped doctors to thrive. The way that interventions were implemented seemed critically important. Doctors and medical students needed to have confidence in an intervention for the intervention to be effective. CONCLUSIONS: Successful interventions to tackle doctors' and students' mental ill-health are likely to be multidimensional and multilevel and involve multiple stakeholders. Evaluating and improving existing interventions is likely to be more effective than developing new ones. Our evidence synthesis provides a basis on which to do this. STUDY REGISTRATION: PROSPERO CRD42017069870. Research project webpage http://sites.exeter.ac.uk/cup/.
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Bawab N, Moullin JC, Bugnon O, Perraudin C, Morrow A, Chan P, Hogden E, Taylor N, Pearson M, Carrieri D, et al (2020). Proceedings of the Virtual 3rd UK Implementation Science Research Conference. Implementation Science, 15(S4).
Carrieri D, Peccatori FA (2020). Seeing beyond COVID-19: understanding the impact of the pandemic on oncology, and the importance of preparedness.
History and Philosophy of the Life Sciences,
42(4).
Abstract:
Seeing beyond COVID-19: understanding the impact of the pandemic on oncology, and the importance of preparedness
AbstractThe impact of this pandemic is not only through COVID-19 itself: the care for non-COVID-19 related conditions has been dramatically curtailed, shaking entire healthcare services around the world. Amongst the non-COVID-19 related conditions, oncology has been disproportionally affected. We discuss how oncology has changed since the acute phase of the pandemic; its impact on clinicians, trainees, and patients; and offer some medical and historical perspectives to reflect on how this impact could be reduced.
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Carrieri D, Peccatori FA, Grassi L, Boniolo G (2019). Dealing with death in cancer care: should the oncologist be an amicus mortis?. Supportive Care in Cancer
Carrieri D, Gerada C, Thistlethwaite J (2019). Health and well-being: time to be strategic.
Clin Teach,
16(4), 295-297.
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Carrieri D, Howard HC, Benjamin C, Clarke AJ, Dheensa S, Doheny S, Hawkins N, Halbersma-Konings TF, Jackson L, Kayserili H, et al (2019). Recontacting patients in clinical genetics services: recommendations of the European Society of Human Genetics. European Journal of Human Genetics, 27(2).
Carrieri D, Howard HC, Clarke AJ, Stefansdottir V, Cornel MC, van El CG, Forzano F (2019). Reply to Bombard and Mighton.
Eur J Hum Genet,
27(4), 507-508.
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Doheney S, Clarke A, Carrieri D, Dheensa S, Hawkins N, Lucassen A, Turnpenny P, Kelly SE (2018). Dimensions of responsibility in medical genetics: exploring the complexity of the “duty to recontact”. New Genetics and Society, 37(3)
Carrieri D, Jackson L, Bewshea C, Prainsack B, Mansfield J, Ahmad T, Hawkins N, Kelly S (2018). Ethical issues in genomic research: Proposing guiding principles co-produced with stakeholders.
Clinical Ethics,
13(4), 194-198.
Abstract:
Ethical issues in genomic research: Proposing guiding principles co-produced with stakeholders
Ethical guidance for genomic research is increasingly sought and perceived to be necessary. Although there are pressing ethical issues in genomic research – concerning for example the recruitment of patients/participants; the process of taking consent; data sharing; and returning results to patients/participants – there is still limited useful guidance available for researchers/clinicians or for the research ethics committees who review such projects. This report outlines the ethical principles and guidance for genomic research co-produced with stakeholders during two workshops which took place in the UK between November 2016 and May 2017. The stakeholders involved in these workshops included: healthcare professionals, genomic research teams, academics, patients, biobank managers, and representatives from the Health Research Authority (HRA), NHS Research Ethics Committees, patient support groups, pharmaceutical industry, and health policy think tanks. The co-produced principles and guidance are specifically aimed at researchers/clinicians and members of NHS Research Ethics Committees, and are formulated with the intention to be clear and accessible, both in terms of content and language, to these groups.
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Sirchia F, Carrieri D, Dheensa S, Benjamin C, Kayserili H, Cordier C, van El CG, Turnpenny PD, Melegh B, Mendes Á, et al (2018). Recontacting or not recontacting? a survey of current practices in clinical genetics centres in Europe. European Journal of Human Genetics, 26(7), 946-954.
Carrieri D, Peccatori FA, Boniolo G (2018). Supporting Supportive Care in Cancer: the ethical importance of promoting a holistic conception of quality of life.
Crit Rev Oncol Hematol,
131, 90-95.
Abstract:
Supporting Supportive Care in Cancer: the ethical importance of promoting a holistic conception of quality of life.
Advances in anticancer therapies and increasing attention towards patient quality of life make Supportive Care in Cancer (SCC) a key aspect of excellence in oncological care. SCC promotes a holistic conception of quality of life encompassing clinical, ethical/existential, and spiritual dimensions. Despite the calls of international oncology societies empirical evidence shows that SCC has not yet been implemented. More efforts are needed given the clinical and ethical value of SCC not only for patients, but also for clinicians and hospitals. Drawing on different literature sources, we identify and discuss three important barriers to the implementation of SCC: 1) organisational - lack of adequate resources and infrastructures in over-stretched clinical environments, 2) professional- burnout of cancer clinicians; and 3) cultural - stigma towards death and dying. We add an ethical counselling framework to the SCC implementation toolkit- which, could offer a flexible and resource-light way of embedding SCC, addressing these barriers.
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Carrieri D, Peccatori FA, Boniolo G (2018). The ethical plausibility of the 'Right to Try' laws.
Crit Rev Oncol Hematol,
122, 64-71.
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The ethical plausibility of the 'Right to Try' laws.
'Right to Try' (RTT) laws originated in the USA to allow terminally ill patients to request access to early stage experimental medical products directly from the producer, removing the oversight and approval of the Food and Drug Administration. These laws have received significant media attention and almost equally unanimous criticism by the bioethics, clinical and scientific communities. They touch indeed on complex issues such as the conflict between individual and public interest, and the public understanding of medical research and its regulation. The increased awareness around RTT laws means that healthcare providers directly involved in the management of patients with life-threatening conditions such as cancer, infective, or neurologic conditions will deal more frequently with patients' requests of access to experimental medical products. This paper aims to assess the ethical plausibility of the RTT laws, and to suggest some possible ethical tools and considerations to address the main issues they touch.
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Carrieri D, Briscoe S, Jackson M, Mattick K, Papoutsi C, Pearson M, Wong G (2018). ‘Care Under Pressure’: a realist review of interventions to tackle doctors’ mental ill-health and its impacts on the clinical workforce and patient care. BMJ Open, 8
Dheensa S, Carrieri D, Kelly S, Clarke A, Doheny S, Turnpenny P, Lucassen A (2017). A 'joint venture' model of recontacting in clinical genomics: challenges for responsible implementation.
Eur J Med Genet,
60(7), 403-409.
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A 'joint venture' model of recontacting in clinical genomics: challenges for responsible implementation.
Advances in genomics often lead healthcare professionals (HCPs) to learn new information, e.g. about reinterpreted variants that could have clinical significance for patients seen previously. A question arises of whether HCPs should recontact these former patients. We present some findings interrogating the views of patients (or parents of patients) with a rare or undiagnosed condition about how such recontacting might be organised ethically and practically. Forty-one interviews were analysed thematically. Participants suggested a 'joint venture' model in which efforts to recontact are shared with HCPs. Some proposed an ICT-approach involving an electronic health record that automatically alerts them to potentially relevant updates. The need for rigorous privacy controls and transparency about who could access their data was emphasised. Importantly, these findings highlight that the lack of clarity about recontacting is a symptom of a wider problem: the lack of necessary infrastructure to pool genomic data responsibly, to aggregate it with other health data, and to enable patients/parents to receive updates. We hope that our findings will instigate a debate about the way responsibilities for recontacting under any joint venture model could be allocated, as well as the limitations and normative implications of using ICT as a solution to this intractable problem. As a first step to delineating responsibilities in the clinical setting, we suggest HCPs should routinely discuss recontacting with patients/parents, including the new information that should trigger a HCP to initiate recontact, as part of the consent process for genetic testing.
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Carrieri D, Dheensa S, Doheny S, Clarke AJ, Turnpenny PD, Lucassen AM, Kelly SE (2017). Recontacting in clinical genetics and genomic medicine? We need to talk about it. European Journal of Human Genetics, 25(5), 520-521.
Carrieri D, Dheensa S, Doheny S, Clarke AJ, Turnpenny PD, Lucassen AM, Kelly SE (2017). Recontacting in clinical practice: an investigation of the views of healthcare professionals and clinical scientists in the United Kingdom. European Journal of Human Genetics, 25(3), 275-279.
Carrieri D, Dheensa S, Doheny S, Clarke AJ, Turnpenny PD, Lucassen AM, Kelly SE (2017). Recontacting in clinical practice: the views and expectations of patients in the United Kingdom. European Journal of Human Genetics, 25(10), 1106-1112.
Carrieri D, Bewshea C, Walker G, Ahmad T, Bowen W, Hall A, Kelly S, 7th of October 2015 Exeter Stakeholders Meeting (2016). Ethical issues and best practice in clinically based genomic research: Exeter Stakeholders Meeting Report.
J Med Ethics,
42(11), 695-697.
Abstract:
Ethical issues and best practice in clinically based genomic research: Exeter Stakeholders Meeting Report.
Current guidelines on consenting individuals to participate in genomic research are diverse. This creates problems for participants and also for researchers, particularly for clinicians who provide both clinical care and research to their patients. A group of 14 stakeholders met on 7 October 2015 in Exeter to discuss the ethical issues and the best practice arising in clinically based genomic research, with particular emphasis on the issue of returning results to study participants/patients in light of research findings affecting research and clinical practices. The group was deliberately multidisciplinary to ensure that a diversity of views was represented. This report outlines the main ethical issues, areas of best practice and principles underlying ethical clinically based genomic research discussed during the meeting. The main point emerging from the discussion is that ethical principles, rather than being formulaic, should guide researchers/clinicians to identify who the main stakeholders are to consult with for a specific project and to incorporate their voices/views strategically throughout the lifecycle of each project. We believe that the mix of principles and practical guidelines outlined in this report can contribute to current debates on how to conduct ethical clinically based genomic research.
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Carrieri D, Farrimond HR, Kelly SE, Turnpenny PD (2016). Families dealing with the uncertainty of genetic disorders:
the case of Neurofibromatosis Type 1.
Sociology of Health and Illness,
38(5), 753-767.
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Families dealing with the uncertainty of genetic disorders:
the case of Neurofibromatosis Type 1
Some scholars contend that genetic medicine is transforming the experience of illness and thesocial category of the family – bringing future risks into the present, and potentially strengthening familial biological bonds in light of these shared genetic risks. However,
research has shown that genetic information is interpreted and acted upon through a rich repertoire of adaptable social, cultural and familial factors which pre-exist and interact with biomedical knowledge. This paper reports research into families living with
Neurofibromatosis Type 1 (NF1), a highly uncertain condition the manifestation of which can vary considerably also within the same family and, for this reason, has been defined a
condition without parameters. These characteristics make NF1 a particularly informative condition for the examination of family dynamics around genetic information. The study and the methodology are based on the exploration of family networks and allow to investigate the
interrelation of individual and familial constructions of the uncertainty of NF1. This also allows both theoretical and policy claims to be made about the danger of reductionist thinking about the transformative potential of genetic technologies.
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Carrieri D, Lucassen AM, Clarke AJ, Dheensa S, Doheny S, Turnpenny PD, Kelly SE (2016). Recontact in clinical practice: a survey of clinical genetics services in the United Kingdom.
Genetics in medicine : official journal of the American College of Medical Genetics,
18(9), 876-881.
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Recontact in clinical practice: a survey of clinical genetics services in the United Kingdom.
PurposeTo ascertain whether and how recontacting occurs in the United Kingdom.MethodA Web-based survey was administered online between October 2014 and July 2015. A link to the survey was circulated via an e-mail invitation to the clinical leads of the United Kingdom's 23 clinical genetics services, with follow-up with senior clinical genetics staff.ResultsThe majority of UK services reported that they recontact patients and their family members. However, recontacting generally occurs in an ad hoc fashion when an unplanned event causes clinicians to review a file (a "trigger"). There are no standardized recontacting practices in the United Kingdom. More than half of the services were unsure whether formalized recontacting systems should be implemented. Some suggested greater patient involvement in the process of recontacting.ConclusionThis research suggests that a thorough evaluation of the efficacy and sustainability of potential recontacting systems within the National Health Service would be necessary before deciding whether and how to implement such a service or to create guidelines on best-practice models.Genet Med 18 9, 876-881.
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Carrieri D (2010). Disclosure Dilemmas: Ethics of Genetic Prognosis after the 'Right to Know/Not to Know' Debate Christoph Rehmann-Sutter & Hansjakob Muller (eds.) Ashgate 2009. Genomics, Society and Policy, 6(3).
Conferences
Pearson M, Carrieri D, Mattick K, Papoutsi C, Briscoe S, Wong G, Jackson M (2020). How can strategies to address mental ill-health in doctors and medical students be optimised? the interplay of intervention and implementation identified in the 'Care Under Pressure' realist review.
Author URL.
Carrieri D, Dheensa S, Doheny S, Turnpenny PD, Clarke AJ, Lucassen AM, Hawkins N, Kelly SE (2018). Recontacting in clinical practice: results from an investigation of the perspectives of patients and healthcare professionals in the United Kingdom.
Author URL.
Publications by year
2023
Mattick K, Goulding A, Carrieri D, Brennan N, Burford B, Vance G, Dornan T (2023). Constraints and affordances for UK doctors-in-training to exercise agency: a dialogical analysis.
Med EducAbstract:
Constraints and affordances for UK doctors-in-training to exercise agency: a dialogical analysis.
INTRODUCTION: the goal of medical education is to develop clinicians who have sufficient agency (capacity to act) to practise effectively in clinical workplaces and to learn from work throughout their careers. Little research has focused on experiences of organisational structures and the role of these in constraining or affording agency. The aim of this study was to identify priorities for organisational change, by identifying and analysing key moments of agency described by doctors-in-training. METHODS: This was a secondary qualitative analysis of data from a large national mixed methods research programme, which examined the work and wellbeing of UK doctors-in-training. Using a dialogical approach, we identified 56 key moments of agency within the transcripts of 22 semi-structured interviews with doctors based across the UK in their first year after graduation. By analysing action within the key moments from a sociocultural theoretical perspective, we identified tangible changes that healthcare organisations can make to afford agency. RESULTS: When talking about team working, participants gave specific descriptions of agency (or lack thereof) and used adversarial metaphors, but when talking about the wider healthcare system, their dialogue was disengaged and they appeared resigned to having no agency to shape the agenda. Organisational changes that could afford greater agency to doctors-in-training were improving induction, smoothing peaks and troughs of responsibility and providing a means of timely feedback on patient care. CONCLUSIONS: Our findings identified some organisational changes needed for doctors-in-training to practise effectively and learn from work. The findings also highlight a need to improve workplace-based team dynamics and empower trainees to influence policy. By targeting change, healthcare organisations can better support doctors-in-training, which will ultimately benefit patients.
Abstract.
Author URL.
Burford B, Mattick K, Carrieri D, Goulding A, Gale T, Brennan N, Vance G (2023). How is transition to medical practice shaped by a novel transitional role? a mixed-methods study.
BMJ Open,
13(8), e074387-e074387.
Abstract:
How is transition to medical practice shaped by a novel transitional role? a mixed-methods study
ObjectivesThis study considered a novel ‘interim’ transitional role for new doctors (termed ‘FiY1’, interim Foundation Year 1), bridging medical school and Foundation Programme (FP). Research questions considered effects on doctors’ well-being and perceived preparedness, and influences on their experience of transition. While FiY1 was introduced in response to the COVID-19 pandemic, findings have wider and ongoing relevance.DesignA sequential mixed-methods study involved two questionnaire phases, followed by semi-structured interviews. In phase 1, questionnaires were distributed to doctors in FiY1 posts, and in phase 2, to all new FP doctors, including those who had not undertaken FiY1.Setting and participantsParticipants were newly qualified doctors from UK medical schools, working in UK hospitals in 2020. 77% (n=668) of all participants across all phases had undertaken FiY1 before starting FP in August. The remainder started FP in August with varying experience beforehand.Outcome measuresQuestionnaires measured preparedness for practice, stress, anxiety, depression, burnout, identity, and tolerance of ambiguity. Interviews explored participants’ experiences in more depth.ResultsAnalysis of questionnaires (phase 1 n=441 FiY1s, phase 2 n=477 FiY1s, 196 non-FiY1s) indicated that FiY1s felt more prepared than non-FiY1 colleagues for starting FP in August (β=2.71, 95% CI=2.21 to 3.22, p<0.0001), which persisted to October (β=1.85, CI=1.28 to 2.41, p<0.0001). Likelihood of feeling prepared increased with FiY1 duration (OR=1.02, CI=1.00 to 1.03, p=0.0097). Despite challenges to well-being during FiY1, no later detriment was apparent. Thematic analysis of interview data (n=22) identified different ways, structural and interpersonal, in which the FiY1 role enhanced doctors’ emerging independence supported by systems and colleagues, providing ‘supported autonomy’.ConclusionsAn explicitly transitional role can benefit doctors as they move from medical school to independent practice. We suggest that the features of supported autonomy are those ofinstitutionalised liminality—a structured role ‘betwixt and between’ education and practice—and this lens may provide a guide to optimising the design of such posts.
Abstract.
Sakaguchi T, Tokutomi T, Yoshida A, Yamamoto K, Obata K, Carrieri D, Kelly SE, Fukushima A (2023). Recontact: a survey of current practices and BRCA1/2 testing in Japan. Journal of Human Genetics, 68(8), 551-557.
Carrieri D, Peccatori FA, Boniolo G (2023). The Oncohumanities training programme: Fostering a deeper engagement and integration of oncology and humanities to tackle the pressing and complex challenges of cancer care.
Tumori Journal,
109(3), 258-261.
Abstract:
The Oncohumanities training programme: Fostering a deeper engagement and integration of oncology and humanities to tackle the pressing and complex challenges of cancer care
‘Oncohumanities’ is a new field of oncology and humanities which integrates a rich gamut of humanity disciplines and oncological expertise to tackle patients’ real needs and priorities. To promote knowledge and awareness on this topic, we propose a training programme that will blend conceptual knowledge underpinning oncology practice with and person-centred care based on the humanisations of care, on empowerment of patients, and on respect for their diversities. Oncohumanities differs from most existing medical humanities training as it is integrated and engaged with oncology (rather than an add-on). This means that its agenda is driven by the real needs and priorities arising out of daily oncological practice. It is our hope that this new Oncohumanities programme and approach will contribute to guiding future efforts to foster a strong integrated partnership between humanities and oncology.
Abstract.
Uys C, Carrieri D, Mattick K (2023). The impact of shared social spaces on the wellness and learning of junior doctors: a scoping review.
Med Educ,
57(4), 315-330.
Abstract:
The impact of shared social spaces on the wellness and learning of junior doctors: a scoping review.
INTRODUCTION: Impaired wellness among junior doctors is a significant problem. Connectedness and sense of belonging may be important factors to prevent and reduce mental ill-health. Shared social spaces in which health care staff can meet informally are thought to improve connectedness; however, these spaces are in decline. It is unclear what is known about such spaces, how they are used, and their impact on wellness and learning. This study aims to identify and synthetise available literature that informs our current understanding of the nature of shared social spaces as an intervention impacting wellness and learning of junior doctors. METHODS: a scoping review was conducted following the Arksey and O'Malley five-step framework. The review question is 'What is the evidence of the impact of shared social spaces on wellness and learning of junior doctors?' We searched five databases: MEDLINE, EMBASE, APA PsychINFO, APA PsychExtra, and ERIC. We conducted thorough supplementary searches in addition to the database search. RESULTS: We included 41 articles. These were predominantly letters, commentaries, and editorials with only five primary research studies. We identified four significant common attributes of shared social spaces, which can be credited with positive impacts on wellness and learning: (1) Informal: fostering connectedness and belonging, trust and teamwork and offering access to informal help and support; (2) safe: allowing reflection, debrief and raising of concerns; (3) functional: there is planning of clinical care activity, sense of control and engagement from users and provision of refreshment; (4) legitimate: regular maintenance and use of shared social spaces affect role modelling, sustainability and wellness culture. DISCUSSION: This review identified several ways in which shared social spaces impact positively on learning and wellness. There is little primary research in this area. Future research would be useful to further examine how and why this works.
Abstract.
Author URL.
Skinner A, Tester-Jones MC, Carrieri D (2023). Undernutrition among children living in refugee camps: a systematic review of prevalence.
BMJ Open,
13(6), e070246-e070246.
Abstract:
Undernutrition among children living in refugee camps: a systematic review of prevalence
ObjectivesThis review aimed to provide an overview of the prevalence of undernutrition in children under 5 years old in refugee camps according to the different indicators. In addition, we aimed to evaluate the quality and quantity of relevant epidemiological data available.DesignWe used a systematic review of prevalence study design to achieve the above aims. We sought eligible observational studies through database searching of OVID Medline, CAB Global Health, Scopus and PubMed; citation chasing; and grey literature searching.SettingThe setting of interest was refugee camps across the globe.ParticipantsParticipants in the studies included in the review were children under 5 years old.Primary and secondary outcome measuresOutcome measures of interest were the prevalence of wasting, global acute malnutrition, stunting and underweight.ResultsThe review included 33 cross-sectional studies in 86 sites and a total of 36 750 participants. Overall, the quality of the studies was moderate to high, but some reports lacked clarity around data collection or outcome definitions. The results showed a wide variation in prevalence estimates across the different indicators and between different refugee camps. The median prevalence estimates of global acute malnutrition based on weight-for-height z-score, stunting and underweight were 7.1%, 23.8% and 16.7%, respectively. Using weight-for-height z-score identified a higher prevalence of acute malnutrition than using mid-upper arm circumference in the majority of studies.ConclusionsAcute malnutrition remains a public health problem in many refugee camps, but chronic malnutrition has a high prevalence in more locations. Research and policy must, therefore, focus not only on nutrition but also on the wider determinants of both acute and chronic undernutrition. The difference in prevalence of global acute malnutrition depending on the measure used has implications for screening and diagnosis.
Abstract.
2022
Fotsing S, Tohme A, Bekolo G, Mathieu J, Cheema H, Sibbald D, Sweezey A, Ahmed K, Joy T, Sukhera J, et al (2022). Canadian Conference on Medical Education 2022 abstracts. Canadian Medical Education Journal, 13(2), 105-251.
Lock FK, Carrieri D (2022). Factors affecting the UK junior doctor workforce retention crisis: an integrative review.
BMJ Open,
12(3), e059397-e059397.
Abstract:
Factors affecting the UK junior doctor workforce retention crisis: an integrative review
ObjectivesTo determine the factors contributing to the junior doctor workforce retention crisis in the UK using evidence collected directly from junior doctors, and to develop recommendations for changes to address the issue.DesignIntegrative review.Data sourcesSearches were conducted on Ovid Medline and HMIC to locate evidence published between January 2016 and April 2021. This was supplemented by publications from relevant national organisations.Eligibility criteriaEnglish-language papers relating to UK junior doctor retention, well-being or satisfaction which contained data collected directly from junior doctors were included. Papers focusing solely on the pandemic, factors specific to one medical specialty, evaluation of interventions, or numerical data with no evidence relating to causation were excluded. Review papers were excluded.Data extraction and synthesisData were extracted and coded on NVivo by FKL, then thematic analysis was conducted.Results47 papers were included, consisting of academic (qualitative, quantitative, mixed and commentary) and grey literature. Key themes identified were working conditions, support and relationships, and learning and development, with an overarching theme of lack of flexibility. The outcomes of these factors are doctors not feeling valued, lacking autonomy, having a poor work–life balance, and providing compromised patient care. This results in need for a break from medical training.ConclusionThis review builds on findings of related literature regarding working environments, isolation, stigma, and desire for autonomy, and highlights additional issues around learning and training, flexibility, feeling valued, and patient care. It goes on to present recommendations for tackling poor retention of UK junior doctors, highlighting that the complex problem requires evidence-based solutions and a bottom-up approach in which junior doctors are regarded as core stakeholders during the planning of interventions.
Abstract.
Taylor C, Mattick K, Carrieri D, Cox A, Maben J (2022). ‘The WOW factors’: comparing workforce organization and well-being for doctors, nurses, midwives and paramedics in England.
British Medical Bulletin,
141(1), 60-79.
Abstract:
‘The WOW factors’: comparing workforce organization and well-being for doctors, nurses, midwives and paramedics in England
AbstractBackgroundHigh rates of poor mental health in healthcare staff threatens the quality and sustainability of healthcare delivery. Multi-factorial causes include the nature and structure of work. We conducted a critical review of UK NHS (England) data pertaining to: doctors, nurses, midwives and paramedics.Sources of dataKey demographic, service architecture (structural features of work) and well-being indicators were identified and reviewed by a stakeholder group. Data searching prioritized NHS whole workforce sources (focusing on hospital and community health services staff), which were rated according to strength of evidence.FindingsKey differences between professions were: (i) demographics: gender (nursing and midwifery female-dominated, doctors and paramedics more balanced); age (professions other than doctors had ageing workforces); ethnicity (greater diversity among doctors and nurses); (ii) service architecture: despite net staffing growth, turnover and retention were problematic in all professions; 41.5% doctors were consultants but smaller proportions held high grade/band roles in other professions; salaries were higher for doctors; (iii) well-being: all reported high job stress, particularly midwives and paramedics; sickness absence rates for nurses, midwives and paramedics were three times those of doctors, and presenteeism nearly double.Growing pointsSociocultural factors known to increase risk of poor mental health may explain some of the differences reported between professions. These factors and differences in service architecture are vital considerations when designing strategies to improve well-being.Areas timely for developing researchMulti-level systems approaches to well-being are required that consider intersectionality and structural differences between professions; together with inter-professional national databases to facilitate monitoring.
Abstract.
2020
Carrieri D, Peccatori FA, Boniolo G (2020). COVID-19: a plea to protect the older population. International Journal for Equity in Health, 19(1).
Pearson M, Carrieri D, Mattick K, Papoutsi C, Briscoe S, Wong G, Jackson M (2020). How can strategies to address mental ill-health in doctors and medical students be optimised? the interplay of intervention and implementation identified in the 'Care Under Pressure' realist review.
Author URL.
Carrieri D, Pearson M, Mattick K, Papoutsi C, Briscoe S, Wong G, Jackson M (2020). Interventions to minimise doctors’ mental ill-health and its impacts on the workforce and patient care: the Care Under Pressure realist review.
Health Services and Delivery Research,
8(19), 1-132.
Abstract:
Interventions to minimise doctors’ mental ill-health and its impacts on the workforce and patient care: the Care Under Pressure realist review
. Background
. The growing incidence of mental ill-health in health professionals, including doctors, is a global concern. Although a large body of literature exists on interventions that offer support, advice and/or treatment to sick doctors, it has not yet been synthesised in a way that takes account of the complexity and heterogeneity of the interventions, and the many dimensions (e.g. individual, organisational, sociocultural) of the problem.
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. Objectives
. Our aim was to improve understanding of how, why and in what contexts mental health services and support interventions can be designed to minimise the incidence of doctors’ mental ill-health. The objectives were to review interventions to tackle doctors’ mental ill-health and its impact on the clinical workforce and patient care, drawing on diverse literature sources and engaging iteratively with diverse stakeholder perspectives to produce actionable theory; and recommendations that support the tailoring, implementation, monitoring and evaluation of contextually sensitive strategies to tackle mental ill-health and its impacts.
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. Design
. Realist literature review consistent with the Realist and Meta-narrative Evidence Syntheses: Evolving Standards quality and reporting standards.
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. Data sources
. Bibliographic database searches were developed and conducted using MEDLINE (1946 to November week 4 2017), MEDLINE In-Process and Other Non-indexed Citations (1946 to 6 December 2017) and PsycINFO (1806 to November week 2 2017) (all via Ovid) and Applied Social Sciences Index and Abstracts (1987 to 6 December 2017) (via ProQuest) on 6 December 2017. Further UK-based studies were identified by forwards and author citation searches, manual backwards citation searching and hand-searching relevant journal websites.
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. Review methods
. We included all studies that focused on mental ill-health; all study designs; all health-care settings; all studies that included medical doctors/medical students; descriptions of interventions or resources that focus on improving mental ill-health and minimising its impacts; all mental health outcome measures, including absenteeism (doctors taking short-/long-term sick leave); presenteeism (doctors working despite being unwell); and workforce retention (doctors leaving the profession temporarily/permanently). Data were extracted from included articles and the data set was subjected to realist analysis to identify context–mechanism–outcome configurations.
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. Results
. A total of 179 out of 3069 records were included. Most were from the USA (45%) and had been published since 2009 (74%). More included articles focused on structural-level interventions (33%) than individual-level interventions (21%), but most articles (46%) considered both levels. Most interventions focused on prevention, rather than treatment/screening, and most studies referred to doctors/physicians in general, rather than to specific specialties or career stages. Nineteen per cent of the included sources provided cost information and none reported a health economic analysis. The 19 context–mechanism–outcome configurations demonstrated that doctors were more likely to experience mental ill-health when they felt isolated or unable to do their job, and when they feared repercussions of help-seeking. Healthy staff were necessary for excellent patient care. Interventions emphasising relationships and belonging were more likely to promote well-being. Interventions creating a people-focused working culture, balancing positive/negative performance and acknowledging positive/negative aspects of a medical career helped doctors to thrive. The way that interventions were implemented seemed critically important. Doctors needed to have confidence in an intervention for the intervention to be effective.
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. Limitations
. Variable quality of included literature; limited UK-based studies.
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. Future work
. Use this evidence synthesis to refine, implement and evaluate interventions.
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. Study registration
. This study is registered as PROSPERO CRD42017069870.
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. Funding
. This project was funded by the National Institute for Health Research (NIHR) Health Services and Delivery Research programme and will be published in full in Health Services and Delivery Research; Vol. 8, No. 19. See the NIHR Journals Library website for further project information.
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Abstract.
Carrieri D, Mattick K, Pearson M, Papoutsi C, Briscoe S, Wong G, Jackson M (2020). Optimising strategies to address mental ill-health in doctors and medical students: 'Care Under Pressure' realist review and implementation guidance.
BMC Med,
18(1).
Abstract:
Optimising strategies to address mental ill-health in doctors and medical students: 'Care Under Pressure' realist review and implementation guidance.
BACKGROUND: Mental ill-health in health professionals, including doctors, is a global and growing concern. The existing literature on interventions that offer support, advice and/or treatment to sick doctors has not yet been synthesised in a way that considers the complexity and heterogeneity of the interventions, and the many dimensions of the problem. We (1) reviewed interventions to tackle doctors' and medical students' mental ill-health and its impacts on the clinical workforce and patient care-drawing on diverse literature sources and engaging iteratively with diverse stakeholder perspectives-and (2) produced recommendations that support the tailoring, implementation, monitoring and evaluation of contextually sensitive strategies to tackle mental ill-health and its impacts. METHODS: Realist literature review consistent with the RAMESES quality and reporting standards. Sources for inclusion were identified through bibliographic database searches supplemented by purposive searches-resulting also from engagement with stakeholders. Data were extracted from included articles and subjected to realist analysis to identify (i) mechanisms causing mental ill-health in doctors and medical students and relevant contexts or circumstances when these mechanisms were likely to be 'triggered' and (ii) 'guiding principles' and features underpinning the interventions and recommendations discussed mostly in policy document, reviews and commentaries. RESULTS: One hundred seventy-nine records were included. Most were from the USA (45%) and were published since 2009 (74%). The analysis showed that doctors were more likely to experience mental ill-health when they felt isolated or unable to do their job and when they feared repercussions of help-seeking. Healthy staff were necessary for excellent patient care. Interventions emphasising relationships and belonging were more likely to promote wellbeing. Interventions creating a people-focussed working culture, balancing positive/negative performance and acknowledging positive/negative aspects of a medical career helped doctors to thrive. The way that interventions were implemented seemed critically important. Doctors and medical students needed to have confidence in an intervention for the intervention to be effective. CONCLUSIONS: Successful interventions to tackle doctors' and students' mental ill-health are likely to be multidimensional and multilevel and involve multiple stakeholders. Evaluating and improving existing interventions is likely to be more effective than developing new ones. Our evidence synthesis provides a basis on which to do this. STUDY REGISTRATION: PROSPERO CRD42017069870. Research project webpage http://sites.exeter.ac.uk/cup/.
Abstract.
Author URL.
Bawab N, Moullin JC, Bugnon O, Perraudin C, Morrow A, Chan P, Hogden E, Taylor N, Pearson M, Carrieri D, et al (2020). Proceedings of the Virtual 3rd UK Implementation Science Research Conference. Implementation Science, 15(S4).
Carrieri D, Peccatori FA (2020). Seeing beyond COVID-19: understanding the impact of the pandemic on oncology, and the importance of preparedness.
History and Philosophy of the Life Sciences,
42(4).
Abstract:
Seeing beyond COVID-19: understanding the impact of the pandemic on oncology, and the importance of preparedness
AbstractThe impact of this pandemic is not only through COVID-19 itself: the care for non-COVID-19 related conditions has been dramatically curtailed, shaking entire healthcare services around the world. Amongst the non-COVID-19 related conditions, oncology has been disproportionally affected. We discuss how oncology has changed since the acute phase of the pandemic; its impact on clinicians, trainees, and patients; and offer some medical and historical perspectives to reflect on how this impact could be reduced.
Abstract.
2019
Carrieri D, Peccatori FA, Grassi L, Boniolo G (2019). Dealing with death in cancer care: should the oncologist be an amicus mortis?. Supportive Care in Cancer
Carrieri D, Gerada C, Thistlethwaite J (2019). Health and well-being: time to be strategic.
Clin Teach,
16(4), 295-297.
Author URL.
Carrieri D, Howard HC, Benjamin C, Clarke AJ, Dheensa S, Doheny S, Hawkins N, Halbersma-Konings TF, Jackson L, Kayserili H, et al (2019). Recontacting patients in clinical genetics services: recommendations of the European Society of Human Genetics. European Journal of Human Genetics, 27(2).
Carrieri D, Howard HC, Clarke AJ, Stefansdottir V, Cornel MC, van El CG, Forzano F (2019). Reply to Bombard and Mighton.
Eur J Hum Genet,
27(4), 507-508.
Author URL.
Carrieri D (2019). “Care Under Pressure”: How can we achieve wellbeing at work for doctors? TheBMJOpinion.
Web link.
2018
Doheney S, Clarke A, Carrieri D, Dheensa S, Hawkins N, Lucassen A, Turnpenny P, Kelly SE (2018). Dimensions of responsibility in medical genetics: exploring the complexity of the “duty to recontact”. New Genetics and Society, 37(3)
Carrieri D, Jackson L, Bewshea C, Prainsack B, Mansfield J, Ahmad T, Hawkins N, Kelly S (2018). Ethical issues in genomic research: Proposing guiding principles co-produced with stakeholders.
Clinical Ethics,
13(4), 194-198.
Abstract:
Ethical issues in genomic research: Proposing guiding principles co-produced with stakeholders
Ethical guidance for genomic research is increasingly sought and perceived to be necessary. Although there are pressing ethical issues in genomic research – concerning for example the recruitment of patients/participants; the process of taking consent; data sharing; and returning results to patients/participants – there is still limited useful guidance available for researchers/clinicians or for the research ethics committees who review such projects. This report outlines the ethical principles and guidance for genomic research co-produced with stakeholders during two workshops which took place in the UK between November 2016 and May 2017. The stakeholders involved in these workshops included: healthcare professionals, genomic research teams, academics, patients, biobank managers, and representatives from the Health Research Authority (HRA), NHS Research Ethics Committees, patient support groups, pharmaceutical industry, and health policy think tanks. The co-produced principles and guidance are specifically aimed at researchers/clinicians and members of NHS Research Ethics Committees, and are formulated with the intention to be clear and accessible, both in terms of content and language, to these groups.
Abstract.
Carrieri D, Dheensa S, Doheny S, Turnpenny PD, Clarke AJ, Lucassen AM, Hawkins N, Kelly SE (2018). Recontacting in clinical practice: results from an investigation of the perspectives of patients and healthcare professionals in the United Kingdom.
Author URL.
Sirchia F, Carrieri D, Dheensa S, Benjamin C, Kayserili H, Cordier C, van El CG, Turnpenny PD, Melegh B, Mendes Á, et al (2018). Recontacting or not recontacting? a survey of current practices in clinical genetics centres in Europe. European Journal of Human Genetics, 26(7), 946-954.
Carrieri D, Peccatori FA, Boniolo G (2018). Supporting Supportive Care in Cancer: the ethical importance of promoting a holistic conception of quality of life.
Crit Rev Oncol Hematol,
131, 90-95.
Abstract:
Supporting Supportive Care in Cancer: the ethical importance of promoting a holistic conception of quality of life.
Advances in anticancer therapies and increasing attention towards patient quality of life make Supportive Care in Cancer (SCC) a key aspect of excellence in oncological care. SCC promotes a holistic conception of quality of life encompassing clinical, ethical/existential, and spiritual dimensions. Despite the calls of international oncology societies empirical evidence shows that SCC has not yet been implemented. More efforts are needed given the clinical and ethical value of SCC not only for patients, but also for clinicians and hospitals. Drawing on different literature sources, we identify and discuss three important barriers to the implementation of SCC: 1) organisational - lack of adequate resources and infrastructures in over-stretched clinical environments, 2) professional- burnout of cancer clinicians; and 3) cultural - stigma towards death and dying. We add an ethical counselling framework to the SCC implementation toolkit- which, could offer a flexible and resource-light way of embedding SCC, addressing these barriers.
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Author URL.
Carrieri D, Peccatori FA, Boniolo G (2018). The ethical plausibility of the 'Right to Try' laws.
Crit Rev Oncol Hematol,
122, 64-71.
Abstract:
The ethical plausibility of the 'Right to Try' laws.
'Right to Try' (RTT) laws originated in the USA to allow terminally ill patients to request access to early stage experimental medical products directly from the producer, removing the oversight and approval of the Food and Drug Administration. These laws have received significant media attention and almost equally unanimous criticism by the bioethics, clinical and scientific communities. They touch indeed on complex issues such as the conflict between individual and public interest, and the public understanding of medical research and its regulation. The increased awareness around RTT laws means that healthcare providers directly involved in the management of patients with life-threatening conditions such as cancer, infective, or neurologic conditions will deal more frequently with patients' requests of access to experimental medical products. This paper aims to assess the ethical plausibility of the RTT laws, and to suggest some possible ethical tools and considerations to address the main issues they touch.
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Author URL.
Carrieri D, Briscoe S, Jackson M, Mattick K, Papoutsi C, Pearson M, Wong G (2018). ‘Care Under Pressure’: a realist review of interventions to tackle doctors’ mental ill-health and its impacts on the clinical workforce and patient care. BMJ Open, 8
Carrieri D (2018). “Care Under Pressure: Going beyond individual-level interventions to improve doctors’ mental health” NIHR blog.
Web link.
2017
Dheensa S, Carrieri D, Kelly S, Clarke A, Doheny S, Turnpenny P, Lucassen A (2017). A 'joint venture' model of recontacting in clinical genomics: challenges for responsible implementation.
Eur J Med Genet,
60(7), 403-409.
Abstract:
A 'joint venture' model of recontacting in clinical genomics: challenges for responsible implementation.
Advances in genomics often lead healthcare professionals (HCPs) to learn new information, e.g. about reinterpreted variants that could have clinical significance for patients seen previously. A question arises of whether HCPs should recontact these former patients. We present some findings interrogating the views of patients (or parents of patients) with a rare or undiagnosed condition about how such recontacting might be organised ethically and practically. Forty-one interviews were analysed thematically. Participants suggested a 'joint venture' model in which efforts to recontact are shared with HCPs. Some proposed an ICT-approach involving an electronic health record that automatically alerts them to potentially relevant updates. The need for rigorous privacy controls and transparency about who could access their data was emphasised. Importantly, these findings highlight that the lack of clarity about recontacting is a symptom of a wider problem: the lack of necessary infrastructure to pool genomic data responsibly, to aggregate it with other health data, and to enable patients/parents to receive updates. We hope that our findings will instigate a debate about the way responsibilities for recontacting under any joint venture model could be allocated, as well as the limitations and normative implications of using ICT as a solution to this intractable problem. As a first step to delineating responsibilities in the clinical setting, we suggest HCPs should routinely discuss recontacting with patients/parents, including the new information that should trigger a HCP to initiate recontact, as part of the consent process for genetic testing.
Abstract.
Author URL.
Carrieri D, Dheensa S, Doheny S, Clarke AJ, Turnpenny PD, Lucassen AM, Kelly SE (2017). Recontacting in clinical genetics and genomic medicine? We need to talk about it. European Journal of Human Genetics, 25(5), 520-521.
Carrieri D, Dheensa S, Doheny S, Clarke AJ, Turnpenny PD, Lucassen AM, Kelly SE (2017). Recontacting in clinical practice: an investigation of the views of healthcare professionals and clinical scientists in the United Kingdom. European Journal of Human Genetics, 25(3), 275-279.
Carrieri D, Dheensa S, Doheny S, Clarke AJ, Turnpenny PD, Lucassen AM, Kelly SE (2017). Recontacting in clinical practice: the views and expectations of patients in the United Kingdom. European Journal of Human Genetics, 25(10), 1106-1112.
2016
Carrieri D, Bewshea C, Walker G, Ahmad T, Bowen W, Hall A, Kelly S, 7th of October 2015 Exeter Stakeholders Meeting (2016). Ethical issues and best practice in clinically based genomic research: Exeter Stakeholders Meeting Report.
J Med Ethics,
42(11), 695-697.
Abstract:
Ethical issues and best practice in clinically based genomic research: Exeter Stakeholders Meeting Report.
Current guidelines on consenting individuals to participate in genomic research are diverse. This creates problems for participants and also for researchers, particularly for clinicians who provide both clinical care and research to their patients. A group of 14 stakeholders met on 7 October 2015 in Exeter to discuss the ethical issues and the best practice arising in clinically based genomic research, with particular emphasis on the issue of returning results to study participants/patients in light of research findings affecting research and clinical practices. The group was deliberately multidisciplinary to ensure that a diversity of views was represented. This report outlines the main ethical issues, areas of best practice and principles underlying ethical clinically based genomic research discussed during the meeting. The main point emerging from the discussion is that ethical principles, rather than being formulaic, should guide researchers/clinicians to identify who the main stakeholders are to consult with for a specific project and to incorporate their voices/views strategically throughout the lifecycle of each project. We believe that the mix of principles and practical guidelines outlined in this report can contribute to current debates on how to conduct ethical clinically based genomic research.
Abstract.
Author URL.
Carrieri D, Farrimond HR, Kelly SE, Turnpenny PD (2016). Families dealing with the uncertainty of genetic disorders:
the case of Neurofibromatosis Type 1.
Sociology of Health and Illness,
38(5), 753-767.
Abstract:
Families dealing with the uncertainty of genetic disorders:
the case of Neurofibromatosis Type 1
Some scholars contend that genetic medicine is transforming the experience of illness and thesocial category of the family – bringing future risks into the present, and potentially strengthening familial biological bonds in light of these shared genetic risks. However,
research has shown that genetic information is interpreted and acted upon through a rich repertoire of adaptable social, cultural and familial factors which pre-exist and interact with biomedical knowledge. This paper reports research into families living with
Neurofibromatosis Type 1 (NF1), a highly uncertain condition the manifestation of which can vary considerably also within the same family and, for this reason, has been defined a
condition without parameters. These characteristics make NF1 a particularly informative condition for the examination of family dynamics around genetic information. The study and the methodology are based on the exploration of family networks and allow to investigate the
interrelation of individual and familial constructions of the uncertainty of NF1. This also allows both theoretical and policy claims to be made about the danger of reductionist thinking about the transformative potential of genetic technologies.
Abstract.
Carrieri D, Lucassen AM, Clarke AJ, Dheensa S, Doheny S, Turnpenny PD, Kelly SE (2016). Recontact in clinical practice: a survey of clinical genetics services in the United Kingdom.
Genetics in medicine : official journal of the American College of Medical Genetics,
18(9), 876-881.
Abstract:
Recontact in clinical practice: a survey of clinical genetics services in the United Kingdom.
PurposeTo ascertain whether and how recontacting occurs in the United Kingdom.MethodA Web-based survey was administered online between October 2014 and July 2015. A link to the survey was circulated via an e-mail invitation to the clinical leads of the United Kingdom's 23 clinical genetics services, with follow-up with senior clinical genetics staff.ResultsThe majority of UK services reported that they recontact patients and their family members. However, recontacting generally occurs in an ad hoc fashion when an unplanned event causes clinicians to review a file (a "trigger"). There are no standardized recontacting practices in the United Kingdom. More than half of the services were unsure whether formalized recontacting systems should be implemented. Some suggested greater patient involvement in the process of recontacting.ConclusionThis research suggests that a thorough evaluation of the efficacy and sustainability of potential recontacting systems within the National Health Service would be necessary before deciding whether and how to implement such a service or to create guidelines on best-practice models.Genet Med 18 9, 876-881.
Abstract.
Carrieri D, Clarke A, Lucassen A, Kelly S (2016). Should healthcare systems implement routine recontacting services in clinical practice? Some legal and logistical considerations. Harvard Bill of Health.
Web link.
2014
Carrieri D, Kelly SE (2014). Sequencing 100,000 genomes is exciting but how will it transform care for patients?.
Web link.
2013
Carrieri D (2013). Neurofibromatosis Type 1 (NF1): Family Experiences and Healthcare Management of a Genetic Syndrome Characterised by a Highly Uncertain Phenotype.
Author URL.
2010
Carrieri D (2010). Disclosure Dilemmas: Ethics of Genetic Prognosis after the 'Right to Know/Not to Know' Debate Christoph Rehmann-Sutter & Hansjakob Muller (eds.) Ashgate 2009. Genomics, Society and Policy, 6(3).