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

Pilbeam, Caitlin / Greenhalgh, Trisha / Potter, Caroline M

The journal of the Royal Anthropological Institute

2023 Volume 29, Issue 4, Page(s) 820–839

Abstract: 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 ...

Abstract	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.
Language	English
Publishing date	2023-08-17
Publishing country	England
Document type	Journal Article
ZDB-ID	2958749-9
ISSN	0025-1496 ; 1359-0987
ISSN (online)	0025-1496
ISSN	1359-0987
DOI	10.1111/1467-9655.14007
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Article ; Online: Mapping young people's journeys through mental health services: A prospective longitudinal qualitative study protocol.

Pilbeam, Caitlin / Walsh, Erin / Barnes, Katelyn / Scholz, Brett / Olsen, Anna / Stone, Louise

PloS one

2023 Volume 18, Issue 6, Page(s) e0287098

Abstract: 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. ... ...

Abstract	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.
MeSH term(s)	Adolescent ; Humans ; Prospective Studies ; Australia ; Mental Health Services ; Mental Health ; Australian Capital Territory
Language	English
Publishing date	2023-06-13
Publishing country	United States
Document type	Journal Article ; Research Support, Non-U.S. Gov't
ZDB-ID	2267670-3
ISSN	1932-6203 ; 1932-6203
ISSN (online)	1932-6203
ISSN	1932-6203
DOI	10.1371/journal.pone.0287098
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Article ; Online: Mapping young people's journeys through mental health services

Caitlin Pilbeam / Erin Walsh / Katelyn Barnes / Brett Scholz / Anna Olsen / Louise Stone

PLoS ONE, Vol 18, Iss 6, p e

A prospective longitudinal qualitative study protocol.

2023 Volume 0287098

Abstract	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.
Keywords	Medicine ; R ; Science ; Q
Subject code	360
Language	English
Publishing date	2023-01-01T00:00:00Z
Publisher	Public Library of Science (PLoS)
Document type	Article ; Online
Database	BASE - Bielefeld Academic Search Engine (life sciences selection)

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

Wanat, Marta / Borek, Aleksandra J / Pilbeam, Caitlin / Anthierens, Sibyl / Tonkin-Crine, Sarah

Frontiers in sociology

2022 Volume 7, Page(s) 953872

Abstract: 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 ... ...

Abstract	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.
Language	English
Publishing date	2022-08-11
Publishing country	Switzerland
Document type	Journal Article
ISSN	2297-7775
ISSN (online)	2297-7775
DOI	10.3389/fsoc.2022.953872
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Article ; Online: Maintaining High-Touch in High-Tech Digital Health Monitoring and Multi-Omics Prognostication: Ethical, Equity, and Societal Considerations in Precision Health for Palliative Care.

Viana, John Noel / Pilbeam, Caitlin / Howard, Mark / Scholz, Brett / Ge, Zongyuan / Fisser, Carys / Mitchell, Imogen / Raman, Sujatha / Leach, Joan

Omics : a journal of integrative biology

2023 Volume 27, Issue 10, Page(s) 461–473

Abstract: 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 ... ...

Abstract	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.
MeSH term(s)	Humans ; Artificial Intelligence ; Multiomics ; Palliative Care ; Precision Medicine
Language	English
Publishing date	2023-11-01
Publishing country	United States
Document type	Journal Article
ZDB-ID	2030312-9
ISSN	1557-8100 ; 1536-2310
ISSN (online)	1557-8100
ISSN	1536-2310
DOI	10.1089/omi.2023.0120
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Article ; Online: Methodological and Ethical Considerations when Conducting Qualitative Interview Research With Healthcare Professionals

Caitlin Pilbeam / Sibyl Anthierens / Samantha Vanderslott / Sarah Tonkin-Crine / Marta Wanat

International Journal of Qualitative Methods, Vol

Reflections and Recommendations as a Result of a Pandemic

2022 Volume 21

Abstract: The impacts of healthcare professionals (HCPs) being research participants are often neglected. As professionals, they tend to be perceived as ‘immune’ to many negative effects of sharing their experiences. However, in the context of an ongoing global ... ...

Abstract	The impacts of healthcare professionals (HCPs) being research participants are often neglected. As professionals, they tend to be perceived as ‘immune’ to many negative effects of sharing their experiences. However, in the context of an ongoing global pandemic such as COVID-19, these assumptions can be clearly challenged. This article draws on researchers’ experiences of conducting single and longitudinal qualitative interviews with HCPs during the COVID-19 pandemic in Europe during 2020. Reflecting on the methodological and ethical implications of doing such research during a pandemic allows researchers to surface assumptions about and question categories of ‘vulnerability’ and ‘sensitivity’. We explore these categories in relation to three issues we have identified: (i) Blurred boundaries in researcher-participant relationships; (ii) Interviews as spaces to process experiences; and (iii) Motivations to conduct and participate in research. We demonstrate that qualitative interviews during a pandemic are embedded in sense-making processes for both the interviewer and participant, and as such may play an important role in coping and resilience. We therefore argue for ethically active research that critically engages with the concepts of ‘vulnerability’ and ‘sensitivity’, and underpinning assumptions, in context over time throughout the research process for current and future research with HCPs and other groups beyond pandemic situations. We thus aim to prepare researchers for managing these potential facets during the research process. We conclude with practical implications for managing emerging ethical tensions, methodological challenges and the wide-ranging possibilities and responsibilities for research with HCPs, urging researchers to consider the issues in advance.
Keywords	Social sciences (General) ; H1-99
Subject code	170
Language	English
Publishing date	2022-02-01T00:00:00Z
Publisher	SAGE Publishing
Document type	Article ; Online
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Article ; Online: The impact of uncertainty on bereaved family's experiences of care at the end of life: a thematic analysis of free text survey data.

Robinson, Jackie / Pilbeam, Caitlin / Goodwin, Hetty / Raphael, Deborah / Waterworth, Susan / Gott, Merryn

BMC palliative care

2021 Volume 20, Issue 1, Page(s) 60

Abstract: 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 ... ...

Abstract	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.
MeSH term(s)	Bereavement ; Death ; Family ; Humans ; Palliative Care ; Surveys and Questionnaires ; Terminal Care ; Uncertainty
Language	English
Publishing date	2021-04-13
Publishing country	England
Document type	Journal Article
ISSN	1472-684X
ISSN (online)	1472-684X
DOI	10.1186/s12904-021-00748-9
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Article ; Online: Primary care preparedness for the SARS-CoV-2 pandemic: a survey of NHS GPs.

Pilbeam, Caitlin / Edwards, George / Tonkin-Crine, Sarah / Raymond, Meriel / Van Hecke, Oliver / Gobat, Nina

Family practice

2021 Volume 39, Issue 3, Page(s) 332–339

Abstract: 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 ... ...

Abstract	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.
MeSH term(s)	COVID-19/epidemiology ; Cross-Sectional Studies ; Humans ; Pandemics/prevention & control ; Primary Health Care ; SARS-CoV-2 ; State Medicine
Language	English
Publishing date	2021-12-06
Publishing country	England
Document type	Journal Article ; Research Support, Non-U.S. Gov't
ZDB-ID	605939-9
ISSN	1460-2229 ; 0263-2136
ISSN (online)	1460-2229
ISSN	0263-2136
DOI	10.1093/fampra/cmab145
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Article: How do Healthcare Workers 'Do' Guidelines? Exploring How Policy Decisions Impacted UK Healthcare Workers During the First Phase of the COVID-19 Pandemic.

Pilbeam, Caitlin / Tonkin-Crine, Sarah / Martindale, Anne-Marie / Atkinson, Paul / Mableson, Hayley / Lant, Suzannah / Solomon, Tom / Sheard, Sally / Gobat, Nina

Qualitative health research

2022 Volume 32, Issue 5, Page(s) 729–743

Abstract: 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 ... ...

Abstract	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.
MeSH term(s)	COVID-19 ; Health Personnel ; Humans ; Pandemics ; Policy ; SARS-CoV-2 ; United Kingdom
Language	English
Publishing date	2022-01-29
Publishing country	United States
Document type	Journal Article ; Research Support, Non-U.S. Gov't
ZDB-ID	1275716-0
ISSN	1552-7557 ; 1049-7323
ISSN (online)	1552-7557
ISSN	1049-7323
DOI	10.1177/10497323211067772
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Article ; Online: 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.

van Hout, Denise / Hutchinson, Paul / Wanat, Marta / Pilbeam, Caitlin / Goossens, Herman / Anthierens, Sibyl / Tonkin-Crine, Sarah / Gobat, Nina

PloS one

2022 Volume 17, Issue 2, Page(s) e0245182

Abstract: 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 ...

Abstract	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.
MeSH term(s)	Adult ; COVID-19/epidemiology ; COVID-19/prevention & control ; COVID-19/psychology ; COVID-19/virology ; Cross-Sectional Studies ; Europe/epidemiology ; Female ; Guidelines as Topic/standards ; Health Personnel/psychology ; Hospitals/standards ; Humans ; Infection Control/statistics & numerical data ; Male ; Patient Care/methods ; Patient Care/standards ; Personal Protective Equipment/statistics & numerical data ; SARS-CoV-2/isolation & purification
Language	English
Publishing date	2022-02-07
Publishing country	United States
Document type	Journal Article ; Research Support, Non-U.S. Gov't
ZDB-ID	2267670-3
ISSN	1932-6203 ; 1932-6203
ISSN (online)	1932-6203
ISSN	1932-6203
DOI	10.1371/journal.pone.0245182
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