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Dr Erica Seruset Borgstrom

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Professional biography

​I'm a medical anthropologist and senior lecturer at the Open University. I am one of the university's Open Media Fellows. I am a Fellow of the Royal Anthropological Institute and Senior Fellow of the Higher Education Academy (SFHEA). From Autum 2020, I am the lead for Open Thanatology - our research and education group focused on death-related topics. From Autumn 2019 to the end of 2021 I was the Qualifications Lead for Health and Social Care at The Open University. 

My specialist area in research and teaching is death and dying, with an emphasis on end-of-life care. I use my anthropological skills to disrupt the normative concepts in end-of-life care by foregrounding people’s everyday experiences and the structural and discursive elements that shape how care is provided. I am currently involved in several projects about palliative and end-of-life care. I supervise doctoral students in this field, as well as in medical anthropology and sociology more generally.

I hold a PhD from the University of Cambridge (2014). My NIHR CLAHRC-funded doctoral research ethnographically examined English end-of-life care from policy, to practice, to everyday experiences focusing on choice and advance care planning. Findings from my doctoral research have been used in academic publications, policy consultations about end-of-life care, degree-level teaching materials, and open-access education.

Previously I was a research fellow at the London School of Hygiene and Tropical Medicine, where I held the Mildred Blaxter postdoctoral fellowship from the Foundation for the Sociology of Health and Illness. I have also worked at the University of Cambridge within the Cambridge Palliative and End of Life Care Group

I am a co-editor of Mortality, an international, interdiscplinary journal for death studies. I play an active role in the American Anthropological Association's Dying and Bereavement special interest group, which is part of the Society for Medical Anthropology. From 2013 until 2019, I was Membership Secretary and since 2019 I am a Council Member for the Association for the Study of Death and Society. I am a former co-convener of the British Sociological Association Social Aspects of Death, Dying and Bereavement (DDB) study group.

Research interests

My research sits broadly within medical anthropology and medical sociology, drawing primarily on ethnographic methods. Through these lenses, I address normative concepts within end-of-life care to understand the complexity of care delivery and experiences. To this end, I focus on policy, organisational approaches, and personal experiences of living with life-limiting conditions and end-of-life care. By focusing on normative concepts in end-of-life care – such as choice – I juxtapose these elements to examine how end-of-life care is changing and how these concepts shape the way death and dying is experienced. My research is part of an emerging body of work that attends to relationality and care. It contributes to a wider policy and practice shift in advance care planning and end-of-life care from standardised approaches to ones that acknowledge the relational aspects of care and future decision-making.

My current main research project is focusing on understanding how people interpret and use the Ambitions Framework for Palliative and End of Life Care, funded by NHS England and Marie Curie. Other recent research projects examine palliative and end-of-life care, working closely with clinical collaborators. I am a Co-Investigator on an ESRC-funded project, Forms of Care, working with Prof Simon Cohn and Dr Annelieke Driessen at LSHTM. Here we are critically seeking to understand what not intervening looks like and how we can appreciate such ‘non-actions’ as care. My other project, working with Prof Richard Holti, is the InGap Study - describing how geriatric medicine and palliative care work together to provide care for older patients.

During the COVID-19 pandemic  have also been involved in a range of projects looking at loss and grief. For example, with Sharon Mallon, I co-edited a collection from OU students, staff and alumni. It is entitled Narratives of Covid: loss, dying, death and grief during COVID-19 and is available as a free eBook, free pdf download, or an inexpensive printed book

I use my experience of conducting research on end-of-life care to build research capacity around death and dying more generally. For instance, I created and facilitated a workshop about social science research on end-of-life care. This has resulted in several publications and spin-off events, as well as a dedicated virtual group to foster collaborations and share research opportunities and outputs. My interest in the links between epistemology, methodology, and personal experiences of conducting research in death studies has led me to editing several publications about research methodology, including a co-edited book Researching Death, Dying and Bereavement and another book on Unpacking Sensitive Research. I also regularly mentor doctoral students and early-career researchers, and I may have capacity to supervise more  doctoral students at the Open University -  contact me if interested in our latest studentships or about future projects. 

Teaching interests

I am a Senior Fellow of the Higher Education Academy and use my knowledge in teaching to inform the learning design and day-to-day execution of Open University modules in health and social care. As Qualifications Lead within my department I have had oversight over all the modules we offer and the degree pathways available to our students. Within our department, I have personally taught on Level 1, Level 2, and Level 3 modules and contribute to doctoral training and supervision.

Drawing on my research expertise, I significantly contributed to the making of K220 (Death, Dying and Bereavement), particularly the block on end-of-life care and learning guides on ethics. This module is distinctive in supportively engaging students in wide range of issues about death and dying. Importantly, K220 is suitable for those who want an awareness about end-of-life care as well as outlining the skills and knowledge for health and social care professionals about providing end-of-life care. My research has also been used to inform activities in several Level 3 modules around research methods. In my teaching, my primary concern is to foster critical thinking and reflection using social theory and empirical examples.

Previously at other institutions, I have taught medical anthropology, medical sociology, and social research methods at both undergraduate and postgraduate level. I have also been involved in the education of undergraduate and postgraduate medical students.

Impact and engagement

In my work, I am committed to using insights from the social sciences to inform our understanding of death and dying, with a primary focus on end-of-life care. To do this, I have created outputs to reach and engage with different audiences, ranging from blog posts, to animations, and online interactives, as well as sitting on the steering groups of other research and public engagement projects. I am available to consult and for media appearances related to death and dying.

In collaboration with BBC Ideas, we produced a short film about if everyone should have an 'end of life plan'. Since joining the Open University, I have also produced several open-access media resources drawing on my research and expertise in the field. These include: video recordings of a death and dying seminar series, covering topics from dying trajectories to pet death; an animation about death rituals around the world; a short video about my research and language in end-of-life care and another about advance care planning; and a drama with related interactive about advance care planning using the example of a same-sex couple. These resources are available for others to use in their teaching.

For example, working with colleagues across academic and palliative care, I have written several short pieces that reflect on current end-of-life care practice. For example, we have written about the use of language and palliative care, and the state of end-of-life care in the UK. All of these illustrate a commitment to engage with how end-of-life care is currently done and what considering social science perspectives may do to improve this field.

I have worked with Prof Scott Murray and his team to develop teaching and group-discussion guides to be used alongside videos about dying trajectories. These can be used to prompt reflective engagement with the core concepts covered in the videos and enable people to consider their own preferences and assumptions around dying.

I sat on the steering group for the Royal College of Physicians (RCP) 2020 exhibition about doctors and death; exhibition postponed due to the COVID-19 pandemic. I have previously facilitated public-facing events about death and dying, including death cafes, seminar series, knowledge exchange events, and conferences.

Externally funded projects

End of Life Doula UK Evaluation
RoleStart dateEnd dateFunding source
Lead01 Apr 202231 Mar 2023End of Life Doula UK **SPEAK TO FINANCE BEFORE USING THIS FUNDER**

To provide End of Life Doula UK with support to conduct a service evaluation and associated publications.

Examining the Ambitions Framework: Marie Curie case study
RoleStart dateEnd dateFunding source
Lead01 Apr 202231 Mar 2023Marie Curie

This is a project aiming to find out how the Ambitions Framework (for palliative and end of life care) have been understood, interpreted, and applied in a range of contexts.

Mapping the Ambitions Framework (NHS E&I)
RoleStart dateEnd dateFunding source
Lead01 Oct 202131 Mar 2022NHS (National Health Service)

Mapping of cases studies of the Ambitions Framework.

CoA: Non-interventions as a form of care
RoleStart dateEnd dateFunding source
Lead01 Mar 202101 Sep 2021UK Research and Innovation

UKRI CoA allocation fund. This application is for the UKRI CoA costed extension via the university, for a pre-existing ESRC funded project (ES/P002781/1).

Not intervening as an active form of care: an ethnographic study of palliative care
RoleStart dateEnd dateFunding source
Lead01 Sep 201731 Aug 2020ESRC Economic and Social Research Council

Many have commented that biomedical practice is driven by the urge to do something, and that inaction or constraints on action may be conceptualised as ‘failures’. However, there is a growing acceptance that deciding not to intervene can be a legitimate and appropriate form of care, as well as being ethically and economically responsible. Whilst the current language dichotomises these two kinds of practices – action and inaction / or intervention and non-intervention – our anthropological starting point considers action and inaction to have their own set of meanings and values, such that they are not simply defined by being opposite to the other. Instead, we see these as inherently different kinds of practice that emerge as a range of multiple and competing issues, priorities, and perspectives are encountered and made sense of. Although non-intervention decisions and actions are taken throughout biomedical practice, the project will focus on end-of-life care (EOLC) when the potential clash between decisions to intervene or not are made particularly explicit. This project will therefore seek to reconceptualise non-intervention and inaction within biomedical care informed by observations of current clinical practice (phase one) and co-production workshops with healthcare professionals (phase two). Phase One will constitute primary data collection in NHS and community EOLC settings. Observations of clinical meetings where decisions to treat are made and discussed (e.g. multi-disciplinary team meetings, ward round, staffing hand-overs). We are interested in ‘ordinary’ care that may be questioned towards the end of life: routine medication; food, water, and hydration; and technologically assisted care (e.g. dialysis, implantable cardioverter defibrillator). We will observe the ways in which decisions are distributed in time and often between different people (sometimes, including patients and their relatives), formally and informally, and ways in which decisions become substantiated as they are discussed and communicated. We will examine the use of particular terms, metaphors and descriptions, as well as what specific things are presented as the key actors, and the extent to which affect also serves to shape the issues. Analysis will focus on how people ‘do’ any potential clashes – that is, the extent to which clashes are every made explicit, and if so, whether these are reconciled or not. Phase Two will constitute a process of refinement with a view to feeding back findings and co-producing ‘Thought Pieces’. A series of workshops with varied healthcare professionals, using hypothetical scenarios and other prompts, will be conducted to share findings and explore divergent and competing views. This work will serve to inform potentially productive and fitting ways to reframe instances of non-action or non-intervention for applied use. The anticipated outcomes of the study are: - Peer-reviewed articles on theorising and describing inaction and non-intervention in healthcare, linking to literature on absence, waiting, ignorance and uncertainty; - Editorial-style publications on the topic and range of terminology encountered; - For participants of the workshops: changing perspectives on how they view and talk about non-interventions; - Text, Audio and Video ‘Thought Pieces’.

Researching End of Life Care from a Social Science Perspective: Past, Present and Future Directions
RoleStart dateEnd dateFunding source
Lead01 Jun 201728 Feb 2018Foundation for the Sociology of Health and Illness (FSHI);ASDS The Association for the Study of Death and Society

Two-day workshop for PGR/ECR social scientists (sociologists and anthropologist) who do end of life care research.

Publications

How much information is 'reasonable'? A qualitative interview study of the prescribing practices of palliative care professionals. (2022-06-10)
Dumble, Katie; Driessen, Annelieke; Borgstrom, Erica; Martin, Jonathan; Yardley, Sarah and Cohn, Simon
Palliative medicine ((early access))


Tai Chi as therapy for alleviating experiences of social death in people with advanced, incurable disease: An ethnographic study. (2022)
Bradshaw, Andrew; Walker, Liz; Borgstrom, Erica and Burke, Shaunna
Qualitative Research in Sport, Exercise and Health, 14(1) (pp. 84-100)


Group-based Tai Chi as therapy for alleviating experiences of social death in people with advanced, incurable disease: an ethnographic study (2022)
Bradshaw, A.; Walker, L.; Borgstrom, E. and Burke, S.M.
Qualitative Research in Sport, Exercise and Health, 14(1) (pp. 84-100)


The implications of COVID ‐19 on health and social care personnel in long‐term care facilities for older people: An international scoping review (2022)
Jones, Kerry; Schnitzler, Katy and Borgstrom, Erica
Health & Social Care in the Community ((Early access))


Standardising care of the dying: An ethnographic analysis of the Liverpool Care Pathway in England and the Netherlands (2022)
Borgstrom, Erica and Dekker, Natashe Lemos
Sociology of Health & Illness ((Early access))


Placing death and dying: Making place at the end of life (2021-12)
Driessen, Annelieke; Borgstrom, Erica and Cohn, Simon
Social Science & Medicine, 291, Article 113974


Rethinking end of life care: attending to care, language and emotions (2021-12)
Souza, Margaret; Borgstrom, Erica and Zivkovic, Tanya
Social Science & Medicine, 291, Article 114612


Stepping into the hospital side room: a place for death in England (2021-07-16)
Borgstrom, Erica
Somatosphere


The Overlap Between Geriatric Medicine and Palliative Care: A Scoping Literature Review (2021-04-01)
Visser, Renske; Borgstrom, Erica and Holti, Richard
Journal of Applied Gerontology, 40(4) (pp. 355-364)


Internalising ‘sensitivity’: vulnerability, reflexivity and death research(ers) (2021)
Borgstrom, Erica and Ellis, Julie
International Journal of Social Research Methodology, 24(5) (pp. 589-602)


Unpacking sensitive research: a stimulating exploration of an established concept (2021)
Mallon, Sharon; Borgstrom, Erica and Murphy, Sam
International Journal of Social Research Methodology, 24(5) (pp. 517-521)


Ways of ‘Being With’: Caring for Dying patients at the Height of the Covid-19 Pandemic (2021)
Driessen, Annelieke; Borgstrom, Erica and Cohn, Simon
Anthropology in Action, 28(1) (pp. 16-20)


‘It’s like being in a war with an invisible enemy’: A document analysis of bereavement due to COVID-19 in UK newspapers (2021)
Sowden, Ryann; Borgstrom, Erica and Selman, Lucy E.
PLOS ONE, 16(3) (e0247904)


“Saying goodbye” during the COVID-19 pandemic: A document analysis of online newspapers with implications for end of life care (2021)
Selman, Lucy; Sowdon, Ryann and Borgstrom, Erica
Palliative Medicine, 35(7) (pp. 1277-1287)


Models will only get us so far: planning for place of care and death (2021)
Borgstrom, Erica
Age and Ageing, 50(4) (pp. 1009-1010)


Multidisciplinary team meetings in palliative care: an ethnographic study (2021)
Borgstrom, Erica; Cohn, Simon; Driessen, Annelieke; Martin, Jonathan and Yardley, Sarah
BMJ Supportive & Palliative Care ((Early Access))


Multidisciplinary team meetings in palliative care: an ethnographic study (2021)
Borgstrom, Erica; Cohn, Simon; Driessen, Annelieke; Martin, Jonathan and Yardley, Sarah
BMJ Supportive and Palliative Care ((Early access))


Barriers and facilitators to adherence to walking group exercise in older people living with dementia in the community: a systematic review (2020-09-21)
Vseteckova, Jitka; Dadova, Klara; Gracia, Rosaria; Ryan, Gemma; Borgstrom, Erica; Abington, Jane; Gopinath, Manik and Pappas, Yannis
European Review of Aging and Physical Activity, 17, Article 15


‘We come in as “the nothing”’: Researching non-intervention in palliative care (2020-09)
Borgstrom, Erica; Cohn, Simon and Driessen, Annelieke
Medicine Anthropology Theory, 7(2) (pp. 202-213)


What is a good death? A critical discourse policy analysis (2020)
Borgstrom, Erica
BMJ Supportive & Palliative Care ((Early Access))


Learning in the Fourth Age: the role of physical activity interventions for people living in long term facilities (2019-12-01)
Borgstrom, Erica; Deepak Gopinath, Manik and Vseteckova, Jitka
International Journal of Education and Ageing ((In Press))


Experience-based design, co-design and experience-based co-design in palliative and end-of-life care (2019-03-01)
Borgstrom, Erica and Barclay, Stephen
BMJ Supportive & Palliative Care, 9(1) (pp. 60-66)


Practices, Issues and Possibilities at the interface between Geriatrics and Palliative Care: An Exploratory study (InGaP) (2019-02-28)
Borgstrom, E.; Schiff, R.; Khan, S. A.; Hindley, E.; Thayabaran, D.; Savage, E.; Gough, N. and Holti, R.
Age and Ageing, 48(Supplement) (i27-i30)


“We don’t want to go and be idle ducks”: family practices at the end of life (2019)
Borgstrom, Erica; Ellis, Julie and Woodthorpe, Kate
Sociology, 53(6) (pp. 1127-1142)


Barriers and facilitators to adherence to group exercise in institutionalized older people living with dementia: a systematic review (2018-11-09)
Vseteckova, Jitka; Deepak Gopinath, Manik; Borgstrom, Erica; Holland, Caroline; Draper, Jan; Pappas, Yannis; McKeown, Eamonn; Dadova, Klara and Gray, Steve
European Review of Aging and Physical Activity, 15, Article 11


What the social sciences have to offer palliative care (2018-05)
Borgstrom, Erica; Lemos Dekker, Natashe and Hoare, Sarah
European Journal of Palliative Care, 25(3) (pp. 109-111)


Introduction: Researching Death, Dying and Bereavement (2017-05)
Borgstrom, Erica and Ellis, Julie
Mortality, 22(2) (pp. 93-104)


Social Death (2017)
Borgstrom, Erica
QJM: An International Journal of Medicine, 110(1) (pp. 5-7)


Images of hospices on social media: The #notdingy campaign (2016-12-13)
Borgstrom, Erica
Medicine Anthropology Theory, 3(3) (pp. 105-111)


Learning to care: medical students' reported value and evaluation of palliative care teaching involving meeting patients and reflective writing (2016-11-25)
Borgstrom, Erica; Morris, Rachel; Wood, Diana; Cohn, Simon and Barclay, Stephen
BMC Medical Education, 16, Article 306


Applying social theory to understand health-related behaviours (2016)
Holman, Daniel and Borgstrom, Erica
Medical Humanities, 42(2) (pp. 143-145)


Planning for an (un)certain future: Choice within English end-of-life care (2015-09)
Borgstrom, Erica
Current Sociology, 63(5) (pp. 700-713)


Choice and compassion at the end of life: A critical analysis of recent English policy discourse (2015-07-31)
Borgstrom, Erica and Walter, Tony
Social Science & Medicine, 136-137 (pp. 95-105)


Social death in end-of-life care policy (2015)
Borgstrom, Erica
Contemporary Social Science: Journal of the Academy of Social Sciences, 10(3) (pp. 272-283)


Constructing denial as a disease object: accounts by medical students meeting dying patients (2013-03-28)
Borgstrom, Erica; Barclay, Stephen and Cohn, Simon
Sociology of Health and Illness, 35(3) (pp. 391-404)


Medical Professionalism: Conflicting Values for Tomorrow's Doctors (2010-12)
Borgstrom, Erica; Cohn, Simon and Barclay, Stephen
Journal of General Internal Medicine, 25(12) (pp. 1330-1336)


Death, dying, and end-of-life care (2021-07-27)
Borgstrom, Erica
In: Chamberlain, Kerry and Lyons, Antonia eds. Routledge International Handbook of Critical Issues in Health and Illness
ISBN : 9781003185215 | Publisher : Routledge | Published : London


Using an ethnographic approach to study end-of-life care: reflections from research encounters in England (2018-06-27)
Borgstrom, Erica
In: Garnett, Emma; Reynolds, Joanna and Milton, Sarah eds. Ethnographies and Health: Reflections on Empirical and Methodological Entanglements (pp. 67-83)
ISBN : 978-3-319-89395-2 | Publisher : Palgrave Macmillan


National End-of-Life Care Policy in the English Context: The Problem and Solution to Death and Dying (2016-02-12)
Borgstrom, Erica
In: Foster, Liam and Woodthorpe, Kate eds. Death and Social Policy in Challenging Times (pp. 35-52)
ISBN : 978-1-137-48489-5 | Publisher : Palgrave Macmillan


Unpacking Sensitive Research: Epistemological and Methodological Implications (2022-04-14)
Borgstrom, Erica; Mallon, Sharon and Murphy, Sam eds.
ISBN : 9781032172200 / 9781003252320 | Publisher : Routledge | Published : Abingdon


Narratives of COVID: Loss, Dying, Death and Grief during COVID-19 (2021-09-28)
Borgstrom, Erica and Mallon, Sharon eds.
Publisher : The Open University


Researching Death, Dying and Bereavement (2019)
Borgstrom, Erica; Ellis, Julie and Woodthorpe, Kate eds.
ISBN : 9780367891060 | Publisher : Routledge


Placing death and dying:the work of making place at the end of life (2020-03-19)
Driessen, Annelieke; Borgstrom, Erica and Cohn, Simon
In : Palliative Care Congress (19-20 Mar 2020, Telford)


Life or Death Decisions: online engagement using films to explore advance care planning (2020-03-19)
Borgstrom, Erica; Lucassen, Mathijs; Jones, Rebecca; Amoah, Sas; Axtell-Powell, Georgia and Cooke, Georgie
In : Palliative Care Congress (19-20 Mar 2020, Telford, England)


Multidisciplinary Team Meetings as Care in Practice: an ethnography of hospital and community palliative care in the UK (2020)
Borgstrom, Erica; Cohn, Simon; Driessen, Annelieke; Dumble, Katie; Martin, Jonathan and Yardley, Sarah
In : 11th World Research Congress of the European Association for Palliative Care World Research Congress (14-16 May 2020, Palermo, Italy)


“Praying for your loved one wearing masks and gloves is what night-mares feels like.” What do newspapers tell us about experiences of grief, bereavement and death from COVID-19? (2020)
Sowden, Ryann; Selman, Lucy and Borgstrom, Erica
In : Elizabeth Blackwell Institute Focus Week: COVID-19 (26/09/2020)


Long Term Care Staff Experience of Death Anxiety During Viral Outbreaks.
Jones, Kerry; Schnitzler, Katy and Borgstrom, Erica
In : 15th International Death, Dying & Disposal Conference (1-4 Sep 2021, Manchester Metropolitan University (Virtual))


Healthcare Professionals’ Experiences of Pandemics: a rapid review of qualitative research (2022-07-12)
Vincent, Ben; Callahan, Evelyn; Borgstrom, Erica and Holti, Richard
The Open University, Milton Keynes.


Ambitions for Palliative and End of Life Care: Mapping Examples of Use in Practice (2022-03)
Borgstrom, Erica; Jordan, Joanne and Henry, Claire
The Open University, Milton Keynes, UK.


Barriers and facilitators to adherence to walking group exercise in older people living with dementia in the community: a systematic review protocol (2018)
Vseteckova, Jitka; Deepak-Gopinath, Manik; Dadova, Klara; Borgstrom, Erica; Ryan, Gemma; Gracia, Rosaria and Holland, Caroline
Prospero - International Prospective register of Systematic Reviews


Advance care planning: between tools and relational end-of-life care? (2015)
Borgstrom, Erica
BMJ Supportive and Palliative Care; 5; 216-217


What’s in a name? From pathways to plans in end of life care (2013)
Borgstrom, Erica
British Medical Journal; 347