Reflections on the opportunities and challenges of applying experience-based co-design (EBCD) to phase 1 clinical trials in oncology.

BACKGROUND: Experience-Based Co-Design (EBCD) is a multi-stage participatory action research process which was developed originally to increase patient involvement in service improvement initiatives. This viewpoint article serves as a reflection on the researchers' experiences, focusing on the application and feasibility of participatory approaches, particularly co-design, in the specific context of early-phase clinical trials. METHODS: We reflect on the opportunities and challenges of applying EBCD in a new context of early-phase clinical trials in oncology where experimental treatments are increasingly perceived as a therapeutic option and, in certain instances, their efficacy may lead to accelerated approval facilitating a swifter integration into standard care. RESULTS: We propose that the opportunity of applying EBCD in such trials lies in improving the delivery of person-centered care, care coordination, and support during the transition from experimental to standard care. Three potential challenges when applying EBCD in early-phase clinical trials are discussed related to: the need for standardization in trial processes; planning EBCD in a context of high uncertainty; and vulnerability of patient populations. CONCLUSION: Integrating EBCD into early-phase oncology trials presents an opportunity to enhance person-centered care and can lead to simultaneous improvements in care processes and therapeutic development. PATIENT OR PUBLIC CONTRIBUTION: This article has been developed with the collaboration of a patient partner who serves on the advisory board of our ongoing EBCD study in early clinical trials.

Applying models of co-production in the context of health and well-being. A narrative review to guide future practice.

Recent years have seen a dramatic growth in interest in the nature and extent of co-production in the health and social care sectors. Due to the proliferation of work on co-production, there is variation in practice in how co-production is defined, understood, and used in practice. We conducted a narrative review to explore, and provide an overview of, which models of health and social care co-production have been developed, applied, and critiqued over recent decades. Seventy-three peer-reviewed articles met our inclusion criteria. In this set of articles, we identified three broad types of models: conceptual/theoretical, practice-oriented, and presenting a typology. We found that practice-oriented models, predominantly from the Health Services Research and Quality Improvement literature, had largely not drawn on conceptual/theoretical models from the disciplinary fields of Public Administration & Management and Sociology. In particular, they have largely neglected theoretical perspectives on relationships and power and agency in co-production work. The concepts of Service-Dominant Logic and Public Service-Dominant Logic as ways to think about the joint, collaborative process of producing new value, particularly in the context of the use of a service, have also been neglected. Our review has identified distinct literatures which have contributed a variety of models of health and social care co-production. Our findings highlight under-explored dimensions of co-production that merit greater attention in the health and social care contexts. The overview of models of co-production we provide aims to offer a useful platform for the integration of different perspectives on co-production in future research and practice in health and social care.

Adopting, implementing and assimilating coproduced health and social care innovations involving structurally vulnerable populations: findings from a longitudinal, multiple case study design in Canada, Scotland and Sweden.

BACKGROUND: Innovations in coproduction are shaping public service reform in diverse contexts around the world. Although many innovations are local, others have expanded and evolved over time. We know very little, however, about the process of implementation and evolution of coproduction. The purpose of this study was to explore the adoption, implementation and assimilation of three approaches to the coproduction of public services with structurally vulnerable groups. METHODS: We conducted a 4 year longitudinal multiple case study (2019-2023) of three coproduced public service innovations involving vulnerable populations: ESTHER in Jönköping Region, Sweden involving people with multiple complex needs (Case 1); Making Recovery Real in Dundee, Scotland with people who have serious mental illness (Case 2); and Learning Centres in Manitoba, Canada (Case 3), also involving people with serious mental illness. Data sources included 14 interviews with strategic decision-makers and a document analysis to understand the history and contextual factors relating to each case. Three frameworks informed the case study protocol, semi-structured interview guides, data extraction, deductive coding and analysis: the Consolidated Framework for Implementation Research, the Diffusion of Innovation model and Lozeau's Compatibility Gaps to understand assimilation. RESULTS: The adoption of coproduction involving structurally vulnerable populations was a notable evolution of existing improvement efforts in Cases 1 and 3, while impetus by an external change agency, existing collaborative efforts among community organizations, and the opportunity to inform a new municipal mental health policy sparked adoption in Case 2. In all cases, coproduced innovation centred around a central philosophy that valued lived experience on an equal basis with professional knowledge in coproduction processes. This philosophical orientation offered flexibility and adaptability to local contexts, thereby facilitating implementation when compared with more defined programming. According to the informants, efforts to avoid co-optation risks were successful, resulting in the assimilation of new mindsets and coproduction processes, with examples of how this had led to transformative change. CONCLUSIONS: In exploring innovations in coproduction with structurally vulnerable groups, our findings suggest several additional considerations when applying existing theoretical frameworks. These include the philosophical nature of the innovation, the need to study the evolution of the innovation itself as it emerges over time, greater attention to partnered processes as disruptors to existing power structures and an emphasis on driving transformational change in organizational cultures.

Parents' experiences of psychotherapeutic support on the neonatal unit: A mixed methods systematic review to inform intervention development for a multicultural population.

BACKGROUND: Parents of infants admitted to neonatal intensive care require support to minimize the impact on their mental health and to encourage engagement with their infants to support infant neurodevelopment. Many interventions aim to address this need, but there is a lack of research considering the accessibility of these for a multicultural population. AIM: To systematically identify sources of psychotherapeutic support available for parents with infants admitted to neonatal care (NNU, neonatal intensive care unit [NICU] and special care units), assess their accessibility and acceptability and identify challenges and facilitators. STUDY DESIGN: Six electronic databases with no restrictions on language or date were used to identify relevant studies following Preferred Items for Systematic Reviews and Meta-analysis (PRISMA) guidelines. Publications were included in the review if they reviewed parent experience of an intervention actively in place to support parent experience during the neonatal unit stay. Any studies where the intervention's primary aim was infant focused, such as developmental care, were excluded. All publications were quality-assessed using quality appraisal tools appropriate for their design type. Data were extracted line by line using Sekhon et al.'s theoretical acceptability framework and questionnaire. RESULTS: A total of 3309 studies were found, of which 36 studies met the inclusion criteria. Included studies were published worldwide between 2000 and 2023 and explored 15 different interventions. Challenges for parental engagement were due to preconceived ideas about intervention requirements and parents' ability to participate in them. Timely information and providers' experience in delivering the intervention were reported to support engagement and as being valuable for enhancing participant knowledge. The emotional content of interventions was found to be challenging by parents across most studies. This was prominent in interventions designed to be carried out in a group format and where keepsakes were created. However, the value of these interventions was in reducing parents' feelings of isolation through increased social support and providing a starting point for conversations with wider family and friends about the family's neonatal experience. Participant demographics were poorly reported, with only two studies taking into consideration the ethicality of the intervention. CONCLUSION: Poor reporting of participant demographics, and a focus on mothers as participants, means findings are not transferrable to the wider population of parents in neonatal units. Future studies should consider how to ensure that research and interventions are accessible to multicultural populations to improve the understanding of the acceptability of interventions. Better knowledge of neonates and the NNU setting amongst intervention providers could increase the accessibility of psychotherapeutic support for parents. Training for providers on how to manage sensitive conversations may also be beneficial to support parents during interventions. RELEVANCE TO CLINICAL PRACTICE: The impact of neonatal admission on parental mental health is increasingly recognized and reported. Interventions have been developed to reduce the negative impact on the mental health of parents. There continue to be significant health inequalities as a result of many services not taking into account the acceptability and accessibility of interventions in this setting for their multicultural populations. This review highlights the need for better reporting of participant demographics in research and the inclusion of those seldom heard to ensure interventions are culturally, religiously and linguistically appropriate for multicultural populations.

The Mediating Role of Affective States in Short-Term Effects of Activity Engagement on Working Memory in Older Age.

INTRODUCTION: It has been shown that activity engagement is associated with cognitive ability in older age, but mechanisms behind the associations have rarely been examined. Following a recent study which showed short-term effects of activity engagement on working memory performance appearing 6 h later, this study examined the mediating role of affective states in this process. METHODS: For 7 times per day over 2 weeks, 150 Swiss older adults (aged 65-91 years) reported their present (sociocognitive/passive leisure) activities and affective states (high-arousal positive, low-arousal positive, high-arousal negative, and low-arousal negative) and completed an ambulatory working memory task on a smartphone. RESULTS: Multilevel vector autoregression models showed that passive leisure activities were associated with worse working memory performance 6 h later. Passive leisure activities were negatively associated with concurrent high-arousal positive affect (and high-arousal negative affect); high-arousal positive affect was negatively associated with working memory performance 6 h later. A Sobel test showed a significant mediation effect of high-arousal positive affect linking the time-lagged relationship between passive leisure activities and working memory. Additionally, sociocognitive activities were associated with better working memory performance 6 h later. Sociocognitive activities were associated with concurrent higher high- and low-arousal positive affect, which, however, were not associated with working memory performance 6 h later. Thus, a mediation related to sociocognitive activities was not found. DISCUSSION: Passive leisure activities could influence working memory performance through high-arousal positive affect within a timeframe of several hours. Results are discussed in relation to an emotional, and possibly a neuroendocrine, pathway explaining the time-lagged effects of affective states on working memory performance.

Co-designing health services for people living with HIV who have multimorbidity: a feasibility study.

This study explored the feasibility of using an experience-based co-design service improvement methodology to develop a new approach to managing multimorbidity in people living with HIV. Patients with HIV and multimorbidity and staff were recruited from five hospital departments and general practice. Staff and patient experiences were gathered through semi-structured interviews, filmed patient interviews, non-participant observation and patient diaries. A composite film developed from interviews illustrated the touchpoints in the patient journey, and priorities for service improvement were identified by staff and patients in focus groups. Twenty-two people living with HIV and 14 staff took part. Four patients completed a diary and 10 a filmed interview. Analysis identified eight touchpoints, and group work pinpointed three improvement priorities: medical records and information sharing; appointment management; and care co-ordination and streamlining. This study demonstrates that experience-based co-design is feasible in the context of HIV and can inform healthcare improvement for people with multimorbidity.

Developing a novel intervention for type 1 diabetes and disordered eating using a participatory action design process: Safe management of people with Type 1 diabetes and EAting Disorders studY (STEADY).

AIMS: To develop a cognitive behavioural therapy-based intervention for people with type 1 diabetes and disordered eating using Experience-Based Co-Design as part of the Safe management of people with Type 1 diabetes and EAting Disorders studY (STEADY). METHODS: Fifteen people with type 1 diabetes and experience of disordered eating (33 ± 11 years old, 22 ± 12 years diabetes duration) and 25 healthcare professionals working in type 1 diabetes or eating disorders (44 ± 9 years old; 14 ± 10 years of professional experience) attended six Experience-Based Co-Design workshops from July 2019 to March 2020 to collaboratively develop intervention content. RESULTS: We developed a cognitive behaviour therapy intervention 'toolkit' that can be tailored for individual patient needs. Participants designed and revised toolkit materials to ensure acceptability and relevance for people with diabetes and disordered eating by engaging in guided discussion, brainstorming, and rapid testing to review toolkit prototypes in an iterative process. Workshop themes were 'Insulin titration'; 'Hypoglycaemia'; 'Coming to terms with diabetes'; 'Fear of weight gain'; 'Toolkit revision'; and 'Practical elements of STEADY therapy'. The intervention is focussed on improving diabetes self-care and embedded in a multidisciplinary healthcare approach. The intervention will be delivered in 12 sessions by a diabetes specialist nurse trained in cognitive behavioural therapy. CONCLUSIONS: Through an iterative co-design process, people with type 1 diabetes and healthcare professionals collaboratively developed a novel intervention toolkit that can be used with a wide range of disordered eating presentations. The intervention will be tested in the STEADY feasibility randomised controlled trial.

An outbreak of appreciation: A discursive analysis of tweets of gratitude expressed to the National Health Service at the outset of the COVID-19 pandemic.

BACKGROUND: The early stages of the coronavirus disease 2019 pandemic prompted unprecedented displays of gratitude to healthcare workers. In the United Kingdom, gratitude was a hotly debated topic in public discourse, catalysing compelling displays of civic togetherness but also attracting criticism for being an unhelpful distraction that authorized unrealistic expectations of healthcare workers. Expressions of thanks tend to be neglected as drivers of transformation, and yet, they are important indicators of qualities to which people attach significance. OBJECTIVE: This study aimed to use discursive analysis to explore how the National Health Service (NHS) was constructed in attention-attracting tweets that expressed and/or discussed gratitude to the NHS. METHODS: Having determined that Twitter was the most active site for traffic relating to gratitude and the NHS, we established a corpus of 834 most-liked tweets, purposively sampled from Twitter searches on a day-by-day basis over the period of the first lockdown in the United Kingdom (22 March-28 May 2020). We developed a typology for tweets engaging with gratitude as well as analysing what the NHS was thanked for. RESULTS: Our analysis, informed by a discursive psychology approach, found that the meanings attributed to gratitude were highly mobile and there were distinct patterns of activity. The NHS was predominantly-and sometimes idealistically-thanked for working, effort, saving and caring. Displays of gratitude were seen as incommensurable with failures of responsibility. The clap-for-carers campaign was a potent driver of affect, especially in the early parts of the lockdown. CONCLUSIONS: The social value of gratitude is implicated in the re-evaluation of the risks and rewards of healthcare and social care work in the wake of the pandemic. We caution against cynicism about gratitude overshadowing the well-being effects that expressing and receiving gratitude can engender, particularly given concerns over the detrimental effects of the pandemic on mental health. PUBLIC CONTRIBUTION: This study involves the analysis of data provided by the public and published on social media.

Mapping definitions of co-production and co-design in health and social care: A systematic scoping review providing lessons for the future.

OBJECTIVES: This study aimed to explore how the concepts of co-production and co-design have been defined and applied in the context of health and social care and to identify the temporal adoption of the terms. METHODS: A systematic scoping review of CINAHL with Full Text, Cochrane Central Register of Controlled Trials, MEDLINE, PsycINFO, PubMed and Scopus was conducted to identify studies exploring co-production or co-design in health and social care. Data regarding date and conceptual definitions were extracted. From the 2933 studies retrieved, 979 articles were included in this review. RESULTS: A network map of the sixty most common definitions and-through exploration of citations-eight definition clusters and a visual representation of how they interconnect and have informed each other over time are presented. Additional findings were as follows: (i) an increase in research exploring co-production and co-design in health and social care contexts; (ii) an increase in the number of new definitions during the last decade, despite just over a third of included articles providing no definition or explanation for their chosen concept; and (iii) an increase in the number of publications using the terms co-production or co-design while not involving citizens/patients/service users. CONCLUSIONS: Co-production and co-design are conceptualized in a wide range of ways. Rather than seeking universal definitions of these terms, future applied research should focus on articulating the underlying principles and values that need to be translated and explored in practice. PATIENT AND PUBLIC CONTRIBUTION: The search strategy and pilot results were presented at a workshop in May 2019 with patient and public contributors and researchers. Discussion here informed our next steps. During the analysis phase of the review, informal discussions were held once a month with a patient who has experience in patient and public involvement. As this involvement was conducted towards the end of the review, we agreed together that inclusion as an author would risk being tokenistic. Instead, acknowledgements were preferred. The next phase involves working as equal contributors to explore the values and principles of co-production reported within the most common definitions.

Clinician and patient experiences when providing and receiving information and support for managing chemotherapy-induced peripheral neuropathy: A qualitative multiple methods study.

OBJECTIVE: To improve patient experience of chemotherapy-induced peripheral neuropathy (CIPN), it is crucial to identify how patients develop their understanding and perception of CIPN. A wider understanding of the experiences of clinicians who provide CIPN information and support is also needed. This study explored clinician and patient experience of the provision of care, information and support for CIPN. METHODS: Data were collected between July and November 2019 using multiple qualitative methods. Non-participant observations were undertaken in colorectal and breast cancer clinics and at clinician stations, including the observation of chemotherapy consultations between patients and clinicians. Semi-structured interviews with people with cancer and clinicians were also conducted. Data were analysed using inductive reflexive thematic analysis. RESULTS: Three major themes emerged: (1) CIPN is a hidden chemotherapy side effect, (2) assessment and management of CIPN is disconnected and (3) patients and clinicians expect openness in CIPN symptom reporting, information provision and management. CONCLUSION: Findings show the need to address the lack of patients' overall familiarity with CIPN. Echoing earlier studies, our findings suggest that knowledge and understanding about CIPN among clinicians are limited or lacking. These insights from patient and clinicians' CIPN experiences can inform future interventions that may address the genuine needs of patients and enhance CIPN support.

Co-designing a behavioural intervention for reducing the impact of chemotherapy-induced peripheral neuropathy symptoms: An evidence- and theory-driven approach.

OBJECTIVE: This study aims to co-design an evidence- and theory-based behavioural intervention to reduce the impact of chemotherapy-induced peripheral neuropathy (CIPN) symptoms on patients' quality of life. METHODS: Guided by the Medical Research Council Framework for developing and evaluating complex interventions, our intervention development process was guided by (a) findings of systematic reviews, (b) inductive analysis of 39 h of observational fieldwork, 12 patient and 11 clinician interviews, (c) deductive analysis using the Common-Sense Model to develop a Self-Regulation Model of CIPN and (d) 17 patients and 18 clinicians co-designing the intervention. RESULTS: CIPN perception and coping behaviours were highlighted as processes to target when co-designing an intervention. The processes targeted in our intervention are CIPN perception and coping behaviours, namely, (a) self-monitoring of symptoms, (b) communicating and early reporting of symptoms to clinicians, (c) participating in making chemotherapy dose reduction decisions with their clinicians and (d) engaging in self-management and safety strategies to reduce impact of CIPN symptoms. To address these, a behavioural intervention was deemed suitable. CONCLUSION: We developed a self-regulation model of CIPN and a logic model for documenting the proposed mechanism of action of our co-designed behavioural intervention for reducing impact of CIPN symptoms.

Is the end in sight? A study of how and why services are decommissioned in the English National Health Service.

The decommissioning of a health-care service is invariably a highly complex and contentious process which faces many implementation challenges. There has been little specific theorisation of this phenomena, although insights can be transferred from wider literatures on policy implementation and change processes. In this paper, we present findings from empirical case studies of three decommissioning processes initiated in the English National Health Service. We apply Levine's (1979, Public Administration Review, 39(2), 179-183) typology of decommissioning drivers and insights from the empirical literature on pluralistic health-care contexts, complex change processes and institutional constraints. Data include interviews, non-participant observation and documents analysis. Alongside familiar patterns of pluralism and political partisanship, our results suggest the important role played by institutional factors in determining the outcome of decommissioning processes and in particular the prior requirement of political vulnerability for services to be successfully closed. Factors linked to the extent of such vulnerability include the scale of the proposed changes and extent to which they are supported at the macrolevel.

Patient experience data as enacted: Sociomaterial perspectives and 'singular-multiples' in health care quality improvement research.

Over the last three decades, sociomaterial approaches to the study of health care practices have made an important contribution to the sociology of health care. Significant attention has been paid to the role of technology and artefacts in health care and the operation of actor-networks but less space has been given to questions of ontological multiplicity in health care practices. In this paper, we draw upon our study of patient experience data in five acute hospitals in England to illustrate how treating patient experience data as 'singular-multiples' can enable useful insights into patient experience data work in health care organisations. Our data was generated during 12 months of fieldwork at five participating hospitals and included organisational documents, field notes, informal and formal interviews with frontline and managerial staff and patient representatives at the study sites. We use the examples of the Friends and Family Test (FFT) and the National Cancer Patient Experience Survey (NCPES) in England to consider the multiple nature of data as it is enacted in practice and the work data does when coordinated as an entity in the singular. We argue that, and discuss how, the sociomaterial insights we discuss here are relevant to health care quality and improvement research and practice.

Enabling 'citizen voice' in the English health and social care system: A national survey of the organizational structures, relationships and impacts of local Healthwatch in England.

BACKGROUND: Local Healthwatch have been operating since 2013 as 'consumer champions' in health and social care in England. There is little evidence about how they operate and the daily practices through which they seek to represent citizen views and influence others. OBJECTIVE: To explore (a) the current organizational arrangements, relationships and impact of local Healthwatch in England, and (b) to what extent do these vary across local Healthwatch organizations. DESIGN: An online survey of all 150 local Healthwatch in England between December 2018 and January 2019. The survey comprised 47 questions and used a combination of closed- and open-response questions. RESULTS: We received responses from 96 local Healthwatch (68% response rate). Most local Healthwatch reported that they are 'independent' organizations that only do Healthwatch-related work (58.3%) and are funded through a contract (79.2%). Budget cuts have affected four-fifths of local Healthwatch (79.3%) since 2013. Three-quarters (74%) of local Healthwatch currently receive funding external to that provided by their local authority for their Healthwatch functions. Most Healthwatch engage with only one CCG (56.3%), one mental health trust (82.3%) and one community health trust (62.5%), though 59.4% engage with more than one hospital trust. Healthwatch respondents overwhelmingly reported impacts that were local in nature. CONCLUSIONS: Geographical and historical factors, the quality and quantity of their relationships with stakeholders, and different funding arrangements all contribute to high variability in the structure and activities of local Healthwatch and to shaping the nature of their work and impact across England.

Enacting quality improvement in ten European hospitals: a dualities approach.

BACKGROUND: Hospitals undertake numerous initiatives searching to improve the quality of care they provide, but these efforts are often disappointing. Current models guiding improvement tend to undervalue the tensional nature of hospitals. Applying a dualities approach that is sensitive to tensions inherent to hospitals' quest for improved quality, this article aims to identify which organizational dualities managers should particularly pay attention to. METHODS: A set of cross-national, multi-level case studies was conducted involving 383 semi-structured interviews and 803 h of non-participant observation of key meetings and shadowing of staff in ten purposively sampled hospitals in five European countries (England, the Netherlands, Portugal, Sweden, and Norway). RESULTS: Six dualities that describe the quest for improved quality, each embracing a seemingly contradictory feature were identified: plural consensus, distributed connectedness, orchestrated emergence, formalized fluidity, patient coreness, and cautious generativeness. CONCLUSIONS: We advocate for a move from the usual sequential and project-based and systemic thinking about quality improvement to the development of meta-capabilities to balance the simultaneous operation of opposing ideas or concepts. Doing so will help hospital managers to deal with major challenges of change inherent to quality improvement initiatives.

Lost in the shadows: reflections on the dark side of co-production.

This article is a response to Oliver et al.'s Commentary 'The dark side of coproduction: do the costs outweigh the benefits for health research?' recently published in Health Research Policy and Systems (2019, 17:33). The original commentary raises some important questions about how and when to co-produce health research, including highlighting various professional costs to those involved. However, we identify four related limitations in their inquiry, as follows: (1) the adoption of a problematically expansive definition of co-production that fails to acknowledge key features that distinguish co-production from broader collaboration; (2) a strong focus on technocratic rationales for co-producing research and a relative neglect of democratic rationales; (3) the transposition of legitimate concerns relating to collaboration between researchers and practitioners onto work with patients, service users and marginalised citizens; and (4) the presentation of bad practice as an inherent flaw, or indeed 'dark side', of co-production without attending to the corrupting influence of contextual factors within academic research that facilitate and even promote such malpractice. The Commentary's limitations can be seen to reflect the contemporary use of the term 'co-production' more broadly. We describe this phenomenon as 'cobiquity' - an apparent appetite for participatory research practice and increased emphasis on partnership working, in combination with the related emergence of a plethora of 'co' words, promoting a conflation of meanings and practices from different collaborative traditions. This phenomenon commonly leads to a misappropriation of the term 'co-production'. Our main motivation is to address this imprecision and the detrimental impact it has on efforts to enable co-production with marginalised and disadvantaged groups. We conclude that Oliver et al. stray too close to 'the problem' of 'co-production' seeing only the dark side rather than what is casting the shadows. We warn against such a restricted view and argue for greater scrutiny of the structural factors that largely explain academia's failure to accommodate and promote the egalitarian and utilitarian potential of co-produced research.

Gratitude in Health Care: A Meta-narrative Review.

Research into gratitude as a significant sociological and psychological phenomenon has proliferated in the past two decades. However, there is little consensus on how it should be conceptualized or investigated empirically. We present a meta-narrative review that focuses on gratitude in health care, with an emphasis on research exploring interpersonal experiences in the context of care provision. Six meta-narratives from literatures across the humanities, sciences, and medicine are identified, contextualized, and discussed: gratitude as social capital; gifts; care ethics; benefits of gratitude; gratitude and staff well-being; and gratitude as an indicator of quality of care. Meta-narrative review was a valuable framework for making sense of theoretical antecedents and findings in this developing area of research. We conclude that greater attention needs to be given to what constitutes "evidence" in gratitude research and call for qualitative studies to better understand and shape the role and implications of gratitude in health care.

Exploring the conceptualisation and study of freebirthing as a historical and social phenomenon: a meta-narrative review of diverse research traditions.

Freebirthing is a clandestine practice whereby women intentionally give birth without healthcare professionals (HCPs) present in countries where there are medical facilities available to assist them. Women who make this decision are frequently subjected to stigma and condemnation, yet research on the phenomenon suggests that women's motivations are often complex. The aim of this review was to explore how freebirth has been conceptualised over time in the English-language academic and grey literature. The meta-narrative methodology employed enables a phenomenon to be understood within and between differing research traditions, as well as against its social and historical context. Our research uncovered nine research traditions (nursing, autobiographical text with birthing philosophy, midwifery, activism, medicine, sociology, law and ethics, pregnancy and birth advice, and anthropology) originating from eight countries and spanning the years 1957-2018. Most of the texts were written by women, with the majority being non-empirical. Empirical studies on freebirth were usually qualitative, although there were a small number of quantitative medical and midwifery studies; these texts often focused on women's motivations and highlighted a range of reasons as to why a woman would decide to give birth without HCPs present. Motivations frequently related to women's previous negative maternity experiences and the type of maternity care available, for example medicalised and hospital-based. The use of the meta-narrative methodology allowed the origins of freebirth in 1950s America to be traced to present-day empirical studies of the phenomenon. This highlighted how the subject and the publication of literature relating to freebirth are embedded within their social and historical contexts. From its very inception, freebirth aligns with the medicalisation of childbirth, the position of women in society, the provision of maternity care and the way in which women experience maternity services.

Ethics of limb disposal: dignity and the medical waste stockpiling scandal.

We draw on the concept of dignity to consider the ethics of the disposal of amputated limbs. The ethics of the management and disposal of human tissue has been subject to greater scrutiny and discussion in recent years, although the disposal of the limbs often remains absent from such discourses. In light of the recent UK controversy regarding failures in the medical waste disposal and the stockpiling of waste (including body parts), the appropriate handling of human tissue has been subject to further scrutiny. Although this scandal has evoked concern regarding procurement and supply chain issues, as well as possible health and safety risks from such a 'stockpile', the dignity of those patients' implicated in this controversy has been less widely discussed. Drawing at Foster's (2014) work, we argue that a dignity framework provides a useful lens to frame consideration of the disposal of limbs after amputation. Such a framework may be difficult to reconcile with the logic of business and the 'biovalue' of the medical waste, but would we argue afford more patient-centred approaches towards disposal. It may also facilitate better practices to help mitigate future stockpiling incidences.

Codesigning health and other public services with vulnerable and disadvantaged populations: Insights from an international collaboration.

BACKGROUND: Codesign has the potential to transform health and other public services. To avoid unintentionally reinforcing existing inequities, better understanding is needed of how to facilitate involvement of vulnerable populations in acceptable, ethical and effective codesign. OBJECTIVE: To explore citizens' involvement in codesigning public services for vulnerable groups, identify challenges and suggest improvements. DESIGN: A modified case study approach. Pattern matching was used to compare reported challenges with a priori theoretical propositions. SETTING AND PARTICIPANTS: A two-day international symposium involved 28 practitioners, academics and service users from seven countries to reflect on challenges and to codesign improved processes for involving vulnerable populations. INTERVENTION STUDIED: Eight case studies working with vulnerable and disadvantaged populations in three countries. RESULTS: We identified five shared challenges to meaningful, sustained participation of vulnerable populations: engagement; power differentials; health concerns; funding; and other economic/social circumstances. In response, a focus on relationships and flexibility is essential. We encourage codesign projects to enact a set of principles or heuristics rather than following pre-specified steps. We identify a set of principles and tactics, relating to challenges outlined in our case studies, which may help in codesigning public services with vulnerable populations. DISCUSSION AND CONCLUSIONS: Codesign facilitators must consider how meaningful engagement will be achieved and how power differentials will be managed when working with services for vulnerable populations. The need for flexibility and responsiveness to service user needs may challenge expectations about timelines and outcomes. User-centred evaluations of codesigned public services are needed.