A rapid qualitative methods assessment and reporting tool for epidemic response as the outcome of a rapid review and expert consultation.

During the first year of the COVID-19 pandemic, the Methods Sub-Group of the WHO COVID-19 Social Science Research Roadmap Working Group conducted a rapid evidence review of rapid qualitative methods (RQMs) used during epidemics. The rapid review objectives were to (1) synthesize the development, implementation, and uses of RQMs, including the data collection tools, research questions, research capacities, analytical approaches, and strategies used to speed up data collection and analysis in their specific epidemic and institutional contexts; and (2) propose a tool for assessing and reporting RQMs in epidemics emergencies. The rapid review covered published RQMs used in articles and unpublished reports produced between 2015 and 2021 in five languages (English, Mandarin, French, Portuguese, and Spanish). We searched multiple databases in these five languages between December 2020 and January 31, 2021. Sources employing "rapid" (under 6 months from conception to reporting of results) qualitative methods for research related to epidemic emergencies were included. We included 126 published and unpublished sources, which were reviewed, coded, and classified by the research team. Intercoder reliability was found to be acceptable (Krippendorff's α = 0.709). We employed thematic analysis to identify categories characterizing RQMs in epidemic emergencies. The review protocol was registered at PROSPERO (no. CRD42020223283) and Research Registry (no. reviewregistry1044). We developed an assessment and reporting tool of 13 criteria in three domains, to document RQMs used in response to epidemic emergencies. These include I. Design and Development (i. time frame, ii. Training, iii. Applicability to other populations, iv. Applicability to low resource settings, v. community engagement, vi. Available resources, vii. Ethical approvals, viii. Vulnerability, ix. Tool selection); II. Data Collection and Analysis (x. concurrent data collection and analysis, xi. Targeted populations and recruitment procedures); III. Restitution and Dissemination (xii. Restitution and dissemination of findings, xiii. Impact). Our rapid review and evaluation found a wide range of feasible and highly effective tools, analytical approaches and timely operational insights and recommendations during epidemic emergencies.

Maintaining High-Touch in High-Tech Digital Health Monitoring and Multi-Omics Prognostication: Ethical, Equity, and Societal Considerations in Precision Health for Palliative Care.

Advances in digital health, systems biology, environmental monitoring, and artificial intelligence (AI) continue to revolutionize health care, ushering a precision health future. More than disease treatment and prevention, precision health aims at maintaining good health throughout the lifespan. However, how can precision health impact care for people with a terminal or life-limiting condition? We examine here the ethical, equity, and societal/relational implications of two precision health modalities, (1) integrated systems biology/multi-omics analysis for disease prognostication and (2) digital health technologies for health status monitoring and communication. We focus on three main ethical and societal considerations: benefits and risks associated with integration of these modalities into the palliative care system; inclusion of underrepresented and marginalized groups in technology development and deployment; and the impact of high-tech modalities on palliative care's highly personalized and "high-touch" practice. We conclude with 10 recommendations for ensuring that precision health technologies, such as multi-omics prognostication and digital health monitoring, for palliative care are developed, tested, and implemented ethically, inclusively, and equitably.

Mapping young people's journeys through mental health services: A prospective longitudinal qualitative study protocol.

Mental ill health is a major health risk for young people. There is unmet need for mental health assessment and treatment across Australia despite significant investment in government-funded plans to cover mental health and youth-oriented services. Understandings of mental health care for young people are impeded by a lack of longitudinal research. Without this research, it is difficult to understand how services do or do not support the recovery of young people over time. This project will analyse the healthcare journeys of young people aged 16-25 years experiencing their first episode of mental ill health for which they have sought GP support, over 12 months in the Australian Capital Territory. The study team will recruit up to 25 diverse young people and their general practitioners (GPs), and conduct four qualitative semi-structured interviews over 12 months with each participant. GP interviews will explore their role in the mental health care and care coordination for the young person. Interviews with young people will explore experiences and perceptions of navigating the health system, and the supports and resources they engaged with during the 12-month period. In between interviews, young people will be asked to keep a record of their mental health care experiences, through their choice of media. Participant-produced materials will also form the basis for interviews, providing stimuli to discuss the lived experience of care. Through analysing the narratives of both young people and their GPs, the study will establish how young people understand value in mental health care delivery. The study will use longitudinal qualitative mapping of healthcare journeys to identify key barriers and enablers to establishing effective, person-centred health care for young people with mental ill health.

Ethnographic closeness: methodological reflections on the interplay of engagement and detachment in immersive ethnographic research.

With the reflexive turn in the social sciences, emotional engagement is an inevitable and crucial part of data-gathering and analysis. However, there is a glaring gap in methodological discussions to this end. Presenting ethnographic research into end of life with people living at home in England with heart failure, we argue for a methodological blend of engagement and detachment that shifts throughout the research process, and that sensory experience is a core part of engagement. We offer ethnographic examples which present and explore some alternatives to emotional engagement and objective detachment: (1) moving with participants to facilitate engagement during fieldwork through shared sensory experience; (2) detachment as a different way of relating when exiting the field and drawing participant relationships to a close; and (3) ethnographic closeness as the interplay of engagement and detachment in participant debriefing and data analysis. Based on well-established anthropological concepts, and taking both engagement and detachment as embodied and relational, we develop a notion of ethnographic closeness in which detachment is a necessary part. Our detailed methodological discussion thus offers theoretically grounded possibilities and alternatives for approaching and managing the core tension of 'how close is too close?' in ethnographic practice. Further contributions supporting researchers in navigating ethnographic research are needed.

Proximité ethnographique : réflexions méthodologiques sur l'interaction entre engagement et détachement dans la recherche ethnographique en immersionRésuméComposante inévitable et essentielle de la collecte et de l'analyse des données depuis le tournant réflexif pris par les sciences sociales, l'engagement émotionnel est pourtant remarquablement absent des discussions méthodologiques. En présentant leurs recherches ethnographiques sur la fin de vie à domicile de personnes insuffisantes cardiaques en Angleterre, les autrices plaident en faveur d'une méthodologie combinant engagement et détachement, dont l'équilibre est amené à changer au long du processus de recherche, et avancent que l'expérience sensorielle est une composante centrale de l'engagement. Plusieurs exemples ethnographiques décrivent et explorent quelques possibilités autres que l'engagement émotionnel et le détachement objectif : (1) bouger avec les sujets de l'enquête ethnographique, afin de faciliter l'engagement par une expérience sensorielle partagée, (2) utiliser le détachement comme un mode relationnel différent au moment de quitter le terrain et de mettre fin à la relation d'enquête (3) pratiquer une proximité ethnographique combinant engagement et détachement dans l'analyse des données et la restitution. Sur la base de concepts anthropologiques bien établis, en considérant aussi bien l'engagement que le détachement comme incarnés et relationnels, les autrices élaborent une notion de la proximité ethnographique dont le détachement est un élément nécessaire. La discussion méthodologique détaillée offre donc d'autres possibilités, fondées sur la théorie, pour approcher et gérer la tension à la limite entre « près ¼ et « trop près ¼, centrale dans la pratique ethnographique. D'autres contributions sont nécessaires pour aider les chercheurs à trouver leur chemin dans la recherche ethnographique.

Conducting rapid qualitative interview research during the COVID-19 pandemic-Reflections on methodological choices.

As the COVID-19 pandemic has shown, setting up studies in time to gather relevant, real-world data enables researchers to capture current views and experiences, focus on practicalities on the ground, and deliver actionable results. Delivering high quality rapid studies in healthcare poses several challenges even in non-emergency situations. There is an expanding literature discussing benefits and challenges of conducting rapid research, yet there are relatively few examples related to methodological dilemmas and decisions that researchers may face when conducting rapid studies. In rapidly-changing emergency contexts, some of these challenges may be more easily overcome, while others may be unique to the emergency, magnified, or emerge in different ways. In this manuscript, we discuss our reflections and lessons learnt across the research process when conducting rapid qualitative interview studies in the context of a healthcare emergency, focusing on methodological issues. By this we mean the challenging considerations and pragmatic choices we made, and their downstream impacts, that shaped our studies. We draw on our extensive combined experience of delivering several projects during the COVID-19 pandemic in both single and multi-country settings, where we implemented rapid studies, or rapidly adapted an existing study. In the context of these studies, we discuss two main considerations, with a particular focus on the complexities, multiple facets, and trade-offs involved in: (i) team-based approaches to qualitative studies; and (ii) timely and rapid data collection, analysis and dissemination. We contribute a transparent discussion of these issues, describing them, what helped us to deal with them, and which issues have been difficult to overcome. We situate our discussion of arising issues in relation to existing literature, to offer broader recommendations while also identifying gaps in current understandings of how to deal with these methodological challenges. We thus identify key considerations, lessons, and possibilities for researchers implementing rapid studies in healthcare emergencies and beyond. We aim to promote transparency in reporting, assist other researchers in making informed choices, and consequently contribute to the development of the rapid qualitative research.

Experiences and concerns of health workers throughout the first year of the COVID-19 pandemic in the UK: A longitudinal qualitative interview study.

OBJECTIVE: To identify the experiences and concerns of health workers (HWs), and how they changed, throughout the first year of the COVID-19 pandemic in the UK. METHODS: Longitudinal, qualitative study with HWs involved in patient management or delivery of care related to COVID-19 in general practice, emergency departments and hospitals. Participants were identified through snowballing. Semi-structured telephone or video interviews were conducted between February 2020 and February 2021, audio-recorded, summarised, and transcribed. Data were analysed longitudinally using framework and thematic analysis. RESULTS: We conducted 105 interviews with 14 participants and identified three phases corresponding with shifts in HWs' experiences and concerns. (1) Emergency and mobilisation phase (late winter-spring 2020), with significant rapid shifts in responsibilities, required skills, and training, and challenges in patient care. (2) Consolidation and preparation phase (summer-autumn 2020), involving gradual return to usual care and responsibilities, sense of professional development and improvement in care, and focus on learning and preparing for future. (3) Exhaustion and survival phase (autumn 2020-winter 2021), entailing return of changes in responsibilities, focus on balancing COVID-19 and non-COVID care (until becoming overwhelmed with COVID-19 cases), and concerns about longer-term impacts of unceasing pressure on health services. Participants' perceptions of COVID-19 risk and patient/public attitudes changed throughout the year, and tiredness and weariness turned into exhaustion. CONCLUSIONS: Results showed a long-term impact of the COVID-19 pandemic on UK HWs' experiences and concerns related to changes in their roles, provision of care, and personal wellbeing. Despite mobilisation in the emergency phase, and trying to learn from this, HWs' experiences seemed to be similar or worse in the second wave partly due to many COVID-19 cases. The findings highlight the importance of supporting HWs and strengthening system-level resilience (e.g., with resources, processes) to enable them to respond to current and future demands and emergencies.

The experience of European hospital-based health care workers on following infection prevention and control procedures and their wellbeing during the first wave of the COVID-19 pandemic.

BACKGROUND: Working under pandemic conditions exposes health care workers (HCWs) to infection risk and psychological strain. A better understanding of HCWs' experiences of following local infection prevention and control (IPC) procedures during COVID-19 is urgently needed to inform strategies for protecting the psychical and psychological health of HCWs. The objective of this study was therefore to capture the perceptions of hospital HCWs on local IPC procedures and the impact on their emotional wellbeing during the first wave of the COVID-19 pandemic in Europe. METHODS: Participants were recruited in two sampling rounds of an international cross-sectional survey. Sampling took place between 31 March and 17 April 2020 via existing research networks and between 14 May and 31 August 2020 via online convenience sampling. Main outcome measures were behavioural determinants of HCWs' adherence to IPC guidelines and the WHO-5 Well-Being Index, a validated scale of 0-100 reflecting emotional wellbeing. The WHO-5 was interpreted as a score below or above 50 points, a cut-off score used in previous literature to screen for depression. RESULTS: 2289 HCWs from 40 countries in Europe participated. Mean age was 42 (±11) years, 66% were female, 47% and 39% were medical doctors and nurses, respectively. 74% (n = 1699) of HCWs were directly treating patients with COVID-19, of which 32% (n = 527) reported they were fearful of caring for these patients. HCWs reported high levels of concern about COVID-19 infection risk to themselves (71%) and their family (82%) as a result of their job. 40% of HCWs considered that getting infected with COVID-19 was not within their control. This feeling was more common among junior than senior HCWs (46% versus 38%, P value < .01). Sufficient COVID-19-specific IPC training, confidence in PPE use and institutional trust were positively associated with the feeling that becoming infected with COVID-19 was within their control. Female HCWs were more likely than males to report a WHO-5 score below 50 points (aOR 1.5 (95% confidence interval (CI) 1.2-1.8). CONCLUSIONS: In Europe, the COVID-19 pandemic has had a differential impact on those providing direct COVID-19 patient care, junior staff and women. Health facilities must be aware of these differential impacts, build trust and provide tailored support for this vital workforce during the current COVID-19 pandemic.

How do Healthcare Workers 'Do' Guidelines? Exploring How Policy Decisions Impacted UK Healthcare Workers During the First Phase of the COVID-19 Pandemic.

We describe how COVID-19-related policy decisions and guidelines impacted healthcare workers (HCWs) during the UK's first COVID-19 pandemic phase. Guidelines in healthcare aim to streamline processes, improve quality and manage risk. However, we argue that during this time the guidelines we studied often fell short of these goals in practice. We analysed 74 remote interviews with 14 UK HCWs over 6 months (February-August 2020). Reframing guidelines through Mol's lens of 'enactment', we reveal embodied, relational and material impacts that some guidelines had for HCWs. Beyond guideline 'adherence', we show that enacting guidelines is an ongoing, complex process of negotiating and balancing multilevel tensions. Overall, guidelines: (1) were inconsistently communicated; (2) did not sufficiently accommodate contextual considerations; and (3) were at times in tension with HCWs' values. Healthcare policymakers should produce more agile, acceptable guidelines that frontline HCWs can enact in ways which make sense and are effective in their contexts.

Primary care preparedness for the SARS-CoV-2 pandemic: a survey of NHS GPs.

BACKGROUND: Primary care manages a significant proportion of healthcare in the United Kingdom and should be a key part of the SARS-CoV-2 pandemic response. AIM: To assess preparedness for the SARS-CoV-2 pandemic by understanding GPs' perception of their ability to manage current and future service demand, set-up of triage processes, and training in Covid-19 infection prevention and control procedures. DESIGN AND SETTING: Cross-sectional survey of practicing GPs in the United Kingdom, with 2 rounds of data collection early in the pandemic. METHODS: Online survey, scripted and hosted by medeConnect Healthcare, comprising 6 closed prompts on 7-point Likert scales, and an optional free-text component. Quantitative data were analysed using descriptive statistics. Free-text data were analysed thematically. RESULTS: One thousand two GPs completed each round; 51 GPs completed free-text responses in March, and 64 in April. Quantitative data showed greatest confidence in triage of Covid-19 patients, and GPs were more confident managing current than future Covid-19 demand. GPs' responses were more optimistic and aligned in April than March. Free-text data highlighted that GPs were concerned about lack of appropriate personal protective equipment and personal risk of Covid-19 infection in March, and unmet needs of non-Covid-19 patients in April. In both rounds, GPs expressed feeling overlooked by government and public health bodies. CONCLUSION: Guidance to support general practice clinicians to manage future waves of Covid-19 or other health emergencies must be tailored to general practice from the outset, to support clinicians to manage competing health demands, and mitigate impacts on primary care providers' wellbeing.

The SARS-CoV-2 pandemic has posed significant challenges for the health services in the United Kingdom and abroad. A Doctors Association UK poll published in early March 2020 found that only 1% of 800 GPs believed the NHS was well prepared for the SARS-CoV-2 pandemic. We surveyed 1,002 GPs across the United Kingdom to gauge how well prepared they felt to cope with the challenges posed by Covid-19. We conducted surveys in March and April 2020, an important time early in the pandemic with rapid changes and uncertainty. We found that GPs were more confident about their ability to manage Covid-19 patients, and do so safely, in April. GPs were most confident that they would be able to triage Covid-19 patients but were concerned about future Covid-19 demand. GPs expressed frustration about a lack of personal protective equipment in March. In April, GPs' primary concern was that patients with other health concerns were not being seen. In both samples, GPs expressed feelings of being overlooked by the government. Primary care needs tailored guidance from as early as possible in a health crisis to support clinicians to manage the competing demands of responding to emergency situations, maintain usual care and their own wellbeing.

Perspectives on COVID-19 testing policies and practices: a qualitative study with scientific advisors and NHS health care workers in England.

BACKGROUND: As COVID-19 death rates have risen and health-care systems have experienced increased demand, national testing strategies have come under scrutiny. Utilising qualitative interview data from a larger COVID-19 study, this paper provides insights into influences on and the enactment of national COVID-19 testing strategies for health care workers (HCWs) in English NHS settings during wave one of the COVID-19 pandemic (March-August 2020). Through the findings we aim to inform learning about COVID-19 testing policies and practices; and to inform future pandemic diagnostic preparedness. METHODS: A remote qualitative, semi-structured longitudinal interview method was employed with a purposive snowball sample of senior scientific advisors to the UK Government on COVID-19, and HCWs employed in NHS primary and secondary health care settings in England. Twenty-four interviews from 13 participants were selected from the larger project dataset using a key term search, as not all of the transcripts contained references to testing. Framework analysis was informed by the non-adoption, abandonment, scale-up, spread, and sustainability of patient-facing health and care technologies implementation framework (NASSS) and by normalisation process theory (NPT). RESULTS: Our account highlights tensions between the communication and implementation of national testing developments; scientific advisor and HCW perceptions about infectiousness; and uncertainties about the responsibility for testing and its implications at the local level. CONCLUSIONS: Consideration must be given to the implications of mass NHS staff testing, including the accuracy of information communicated to HCWs; how HCWs interpret, manage, and act on testing guidance; and the influence these have on health care organisations and services.

The impact of uncertainty on bereaved family's experiences of care at the end of life: a thematic analysis of free text survey data.

BACKGROUND: Inequities in the provision of palliative care for people with cardiac disease have been well documented in the literature. Despite experiencing significant palliative care needs, those with cardiac disease are less likely to be referred to specialist palliative care services and more likely to die in a hospital when compared to those with cancer. The unpredictable trajectory of heart failure has been identified as a key barrier to providing palliative care with many people experiencing a long period of stability with appropriate medical treatment. However, as the disease progresses and cardiac function deteriorates, exacerbations of acute decompensation can lead to what is often perceived to be 'sudden' death. The aim of this study is to explore the impact of uncertainty on how death is remembered by bereaved family members of people with heart disease. METHODS: Thematic analysis of free text collected during a postal survey of bereaved family's experiences of healthcare services in the last 3 months of life using the New Zealand version of the VOICES questionnaire was undertaken. Data was analysed using a three-dimensional conceptual framework of "scientific uncertainty". RESULTS: Eight hundred and twenty-seven completed questionnaires were received of which 12.6% (n = 105) indicated that they had cared for someone at the end of life with cardiac disease. Experiences of uncertainty were found to have a significant impact upon bereaved family. Four key themes were identified; distrust in healthcare professionals, stories left incomplete, loss, regret and missed opportunity and disempowerment. CONCLUSIONS: This study highlights the ongoing impact on bereaved family when uncertainty is not made explicit in conversations regarding end of life for people with heart disease. Timely and sensitive conversations regarding the uncertainty of when death may occur is an important factor in ensuring that bereaved family are not left with unresolved narratives. Reframing how we think and talk about uncertainty in end of life care is important, as clinicians' uncertainties may not always reflect or match up with families' uncertainties. Being explicit about our inability to be certain about the timing of death may thus lead to a more positive and complete experience for bereaved family.

Analysing self-regulatory behaviours in response to daily weighing: a think-aloud study with follow-up interviews.

Objective: To examine the extent to which people who are trying to lose weight naturally self-regulate in response to self-weighing and to identify barriers to self-regulation. Design/Main Outcome Measures: Twenty-four participants, who were overweight and trying to lose weight, recorded their thoughts during daily weighing for eight weeks. Semi-structured follow-up interviews assessed participant experiences. Qualitative analysis identified steps of the self-regulation process and barriers to self-regulation. Exploratory regression analysis assessed the relationship between the self-regulation steps and weight loss. Results: On 90% of 498 occasions, participants compared their weight measurement to an expectation or goal, and on 58% they reflected on previous behaviour. Action planning only occurred on 20% of occasions, and specific action planning was rare (6%). Only specific action planning significantly predicted weight loss (-2.1 kg per 1 SD increase in the predictor, 95% CI = -3.9, -0.3). Thematic analysis revealed that barriers to the interpretation of daily weight changes were difficulties in understanding day-to-day fluctuations, losing the overview of trends, forgetting to weigh, and forgetting previous measurements. Conclusion: Specific action planning can lead to weight loss, but is rare in a naturalistic setting. Barriers to self-regulation relate to the interpretation of weight changes.