Advancing a collective vision for equity-based cocreation through prototyping at an international forum.

BACKGROUND: Cocreation has the potential to engage people with lived and living experiences in the design and evaluation of health and social services. However, guidance is needed to better include people from equity-deserving groups (EDGs), who are more likely to face barriers to participation, experience ongoing or historical harm, and benefit from accessible methods of engagement. OBJECTIVE: The aim of this international forum (CoPro2022) was to advance a collective vision for equity-based cocreation. DESIGN: A participatory process of engagement in experiential colearning and arts-based creative and reflective dialogue. Visual prototypes were created and synthesised to generate a collective vision for inclusive equity-based cocreation. SETTING AND PARTICIPANTS: The Forum was held at the Gathering Place by the Grand River in Ohsweken, Ontario, Canada. A total of 48 participants attended the forum. They were purposely invited and have intersecting positionalities (21 academic experts, six experience experts, 10 trainees, and 11 members of EDGs) from nine countries (Bangladesh, Botswana, Canada, England, Italy, Norway, Scotland, Singapore, Sweden). COPRO2022 ACTIVITIES: CoPro2022 was an immersive experience hosted on Indigenous land that encouraged continuous participant reflection on their own worldviews and those of others as participants openly discussed the challenges and opportunities with engaging EDGs in cocreation activities. Visual prototypes and descriptions created in small groups were informed by participants' reflections on the panel presentations at the Forum and their own experiences with equity-based cocreation. Following the event, the authorship team inductively coded themes from the prototype descriptions and met to discuss the cross-cutting themes. These informed the design of an illustrated collective vision for Equity Based Co-Creation (EqCC). RESULTS: Six prototypes were cocreated by each small group to illustrate their vision for EqCC. Within these, four cross-cutting themes were identified: (i) go to where people are, (ii) nurture relationships and creativity, (iii) reflect, replenish and grow, (iv) and promote thriving and transformation. These four themes are captured in the Collective EqCC Vision to guide a new era of inclusive excellence in cocreation activities. PATIENT OR PUBLIC CONTRIBUTION: Service users, caregivers, and people with lived experience were involved in leading the design of the CoPro2022 and co-led the event. This included activities at the event such as presenting, facilitating small and large group discussion, leading art-based activities, and reflecting with the team on the lessons learned. People with lived experience were involved in the analysis and knowledge sharing from this event. Several members of the research team (students and researchers) also identified as members of EDGs and were invited to draw from their personal and academic knowledge.

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.

Correction: Doing our best and doing no harm: A focused ethnography of staff moral experiences of providing palliative care at a Médecins Sans Frontières pediatric hospital in Cox's Bazar, Bangladesh.

[This corrects the article DOI: 10.1371/journal.pone.0288938.].

Doing our best and doing no harm: A focused ethnography of staff moral experiences of providing palliative care at a Médecins Sans Frontières pediatric hospital in Cox's Bazar, Bangladesh.

INTRODUCTION: The Médecins Sans Frontières (MSF) Goyalmara Hospital in Cox's Bazar, Bangladesh is a referral centre offering the highest level of care available in the Rohingya camps for pediatrics and neonatology. Efforts are underway to integrate pediatric palliative care due to high mortality and medical complexity of patients, yet little is known about the experiences of staff delivering palliative and end-of-life care. The purpose of this study was to understand the moral experiences of MSF staff to inform program planning and implementation. METHODS: This focused ethnography was conducted between March-August 2021 at Goyalmara Hospital. Data collection involved participant-observation, individual interviews (22), focus group discussions (5), and analysis of documents including MSF clinical guidelines, admission and referral criteria, reports, and training materials. Data analysis followed a modified version of the Qualitative Analysis Guide of Leuven and data were coded using NVivo software. RESULTS: The prevailing understanding of pediatric palliative care among national and international staff was care that prioritized comfort for infants and children who were not expected to survive. Staff's views were informed by their sense of obligation to do no harm, to do their best on behalf of their patients, and religious beliefs about God's role in determining the child's outcome. The authority of doctors, international staff, as well as protocols and guidelines shaped palliative care decision-making. Staff saw clinical guidelines as valuable resources that supported a consistent approach to care over time, while others were concerned that palliative care guidelines were rigidly applied. CONCLUSION: When integrating palliative care into humanitarian programs, it is important to emphasize the active role of palliative care in reducing suffering. Advocacy for access to the highest level of care possible should continue alongside palliative care integration. While palliative care guidelines are valuable, it is essential to encourage open discussion of staff concerns and adapt care plans based on the family's needs and preferences.

Living with "long COVID": A systematic review and meta-synthesis of qualitative evidence.

OBJECTIVES: Long-term health consequences of coronavirus disease (COVID-19), also known as "long COVID," has become a global health concern. In this systematic review, we aimed to synthesize the qualitative evidence on lived experiences of people living with long COVID that may inform health policymaking and practice. METHODS: We searched six major databases and additional sources and systematically retrieved relevant qualitative studies and conducted a meta-synthesis of key findings using the Joanna Briggs Institute (JBI) guidelines and reporting standards of the Preferred Reporting Items for Systematic Reviews and Meta-Analysis (PRISMA) checklist. RESULTS: We found 15 articles representing 12 studies out of 619 citations from different sources. These studies provided 133 findings that were categorized into 55 categories. All categories were aggregated to the following synthesized findings: living with complex physical health problems, psychosocial crises of long COVID, slow recovery and rehabilitation, digital resources and information management, changes in social support, and experiences with healthcare providers, services, and systems. Ten studies were from the UK, and others were from Denmark and Italy, which highlights a critical lack of evidence from other countries. CONCLUSIONS: More representative research is needed to understand long COVID-related experiences from diverse communities and populations. The available evidence informs a high burden of biopsychosocial challenges among people with long COVID that would require multilevel interventions such as strengthening health and social policies and services, engaging patients and caregivers in making decisions and developing resources, and addressing health and socioeconomic disparities associated with long COVID through evidence-based practice.

Solidarity and suffering: enrolled terminal patients' and their caregiver's experiences of the community-based palliative care programme in an urban slum of Bangladesh.

Background: Palliative care has been recognised as a global health challenge. Although accessibility has increased, there is little recognition of the importance of palliative care in low- and middle-income countries. In Bangladesh, institutional palliative care is not accessible due to a lack of awareness, financial constraints, and fewer facilities. Hence, there needs to be a better understanding of providing and improving existing community-based palliative care. For this, it is essential to understand the experiences of patients and their caregivers who require palliative care. With this aim, this study explores the experiences of palliative patients and their primary caregivers enrolled in a palliative care project, 'Momotamoy Korail' run by Bangabandhu Sheikh Mujib Medical University in an urban slum, Dhaka. Methods: This research is a part of a larger qualitative study that relied on a focused ethnographic approach. For this study, we used 19 in-depth interviews following a semi-structured guideline with the palliative care patients and their primary caregivers enrolled in the community-based palliative care project. Results: Mostly women (wives and daughters-in-law) are the primary caregivers in a family. Therefore, male patients are more likely to receive family care than female patients. Both male and female patients expressed the desire for a death free of suffering. All patients felt lonely and socially abandoned with a perception of being a burden to their families. Despite the diversity in physical, social, psychological, and financial suffering, patients and caregivers were optimistic towards a healthy life free of illness. All respondents were satisfied with the care they received from the palliative care assistants, which provide them hope and dignity for life. Conclusion: Experiences of the respondents can improve the quality of the existing community-based palliative care services and add great value to the discipline of palliative care in public health. The findings provided an understanding of what would be required to extend community-based palliative care to other healthcare settings. More awareness through community mobilisation about the need for and benefit of palliative care is needed to make it sustainable.

Consent Requirements for Testing Health Policies: An Intercontinental Comparison of Expert Opinions.

Individual informed consent is a central requirement for clinical research on human subjects, yet whether and how consent requirements should apply to health policy experiments (HPEs) remains unclear. HPEs test and evaluate public health policies prior to implementation. We interviewed 58 health experts in Tanzania, Bangladesh and Germany on informed consent requirements for HPEs. Health experts across all countries favored a strong evidence base, prior information to the affected populations, and individual consent for 'risky' HPEs. Differences pertained to individual risk perception, how and when consent by group representatives should be obtained and whether HPEs could be treated as health policies. The study adds to representative consent options for HPEs, yet shows that more research is needed in this field - particularly in the present Covid-19 pandemic which has highlighted the need for HPEs nationally and globally.

A critical look at synergies and fragmentations of universal health coverage, global health security, and health promotion in delivery of frontline health care services: A case study of Bangladesh.

Universal Health Coverage (UHC) and Global Health Security (GHS) activities encompass mitigation of risks to health and well-being rights posed by infectious disease outbreaks and facilitated by health promotion (HP) activities. This case study investigated Bangladesh's readiness and capacity to 'prevent, detect and respond' to such outbreaks of an epidemic/pandemic nature. A rapid review of relevant documents, key informant interviews with policymakers/practitioners, and a deliberative dialogue with a crisscross of stakeholders were used to identify challenges and opportunities for 'synergy' among these streams of activities. Findings reveal conceptual ambiguity among respondents about the scope of the three `agendas and their inter-linkages. They perceived the synergy between UHC and GHS superfluous and were obsessed with losing their respective constituencies and resources. Poor coordination among the focal agencies in field activities, lack of supporting infrastructure, and shortage of human and financial resources posed additional challenges for better pandemic/epidemic preparation in future. Funding: This study, "Researching the UHC-GHS-HP Triangle in Bangladesh," was funded by the Wellcome Trust, UK.

"Thought provoking", "interactive", and "more like a peer talk": Testing the deliberative interview style in Germany.

Proponents of the newly-developed "deliberative interview" argue that examining complex issues requires more dynamic and engaging interview exchanges. Unlike traditional qualitative interviews, deliberative interviewing champions opinion sharing, active debates and similar speaking times by both sides throughout the interview. Drawing on 20 interviews with health experts in Germany, we examined the process and outcome of deliberative versus conventional interviews on the topic of informed consent. The deliberative interview expedited clarity on the issue, led to more nuanced discussion and generated more knowledge overall, but was challenging because it broke the mold for traditional interviewing. Alignment in terms of gender, age, personality and professional background facilitated rapport, regardless of interview style. To manage expectations, we recommend a thorough, perhaps video-based explanation of the deliberative style prior to the interview. Deliberative interviews can bolster knowledge generation for complex issues and can be applied in public health and beyond.

Translating international guidelines for use in routine maternal and neonatal healthcare quality measurement.

BACKGROUND: Improving facility-based quality for maternal and neonatal care is the key to reducing morbidity and mortality rates in low- and middle-income countries. Recent guidance from WHO and others has produced a large number of indicators to choose from to track quality. OBJECTIVE: To explore how to translate complex global maternal and neonatal health standards into actionable application at the facility level. METHODS: We applied a two-step process as an example of how the 352 indicators in WHO's 2016 Standards for Improving Quality of Maternal and Newborn Care in Health Facilities might be reduced to only those with the strongest evidence base, associated with outcomes, and actionable by facility managers. We applied Hill criteria and assessed whether indicators were within the control of facility managers. We next conducted a rapid review of supporting literature and applied GRADE analysis, retaining those with scores of 'moderate' or 'high'. To understand the utility and barriers to measuring this limited set of indicators in practice, we undertook a case study of hypothetical measurement application in two districts in Bangladesh, interviewing 25 clinicians, managers, and other stakeholders. RESULTS: From the initial 352 indicators, 56 were retained. The 56 indicators were used as a base for interviews. Respondents emphasized the practical challenges to the use of complex guides and the need for parsimonious and actionable sets of quality indicators. CONCLUSIONS: This work offers one way to move towards a reduced quality indicator set, beginning from current WHO guidance. Despite study limitations, this work provides evidence of the need for reduced and evidence-based sets of quality indicators if guides are to be used to improve quality in practice. We hope that future research will build on and refine our efforts. Measuring quality effectively so that evidence guides and improves practice is the first step to assuring safe maternal and neonatal care.

'Feminization' of physician workforce in Bangladesh, underlying factors and implications for health system: Insights from a mixed-methods study.

BACKGROUND: Bangladesh is currently faced with an emerging scenario of increased number of female physicians in the health workforce which has health system implications. For a health system to attract and retain female physicians, information is needed regarding their motivation to choose medical profession, real-life challenges encountered in home and workplaces, propensity to choose a few particular specialties, and factors leading to drop-out from the system. This exploratory mixed-methods study attempted to fill-in this knowledge gap and help the policy makers in designing a gender-sensitive health system. METHODS: Three-hundred and fifteen final year female medical students from four purposively selected medical colleges of Dhaka city (two each from public and private colleges) were included in a quantitative survey using self-administered questionnaire. Besides, 31 in-depth interviews with female students, their parents, and in-service trainee physicians, and two focus group discussions with female students were conducted. Gender disaggregated data of physicians and admitted students were also collected. Data were analysed using Stata version 13 and thematic analysis method, as appropriate. RESULTS: During 2006-2015, the female physicians outnumbered their male peers (52% vs. 48%), which is also supported by student admission data during 2011-2016 from the sampled medical colleges, (67% in private compared to 52% in public). Majority of the female medical graduates specialized in Obstetrics and Gynaecology (96%). Social status (66%), respect for medical profession (91%), image of a 'noble profession' (91%), and prospects of helping common people (94%) were common motivating factors for them. Gender disparity in work, career and work environment especially in rural areas, and problems of work-home balance, were a few of the challenges mentioned which forced some of them to drop-out. Also, this scenario conditioned them to crowd into a few selected specialties, thereby constraining health system from delivering needed services. CONCLUSIONS: Increasing number of female physicians in health workforce, outnumbering their male peers, is a fact of life for health system of Bangladesh. It's high time that policy makers pay attention to this and take appropriate remedial measures so that women can pursue their career in an enabling environment and serve the needs and priorities of the health system.