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Current research projects

Here is an example of some of the current projects being undertaken within Open Thanatology. If you are interested in collaboration with us, please contact Erica Borgstrom or the group member that aligns with your research interests. You can see more projects that individual members are part of by visiting their individual staff profiles.

 

Realising the Ambitions for Palliative and End of Life Care

The Ambitions for Palliative and End of Life Care: a national framework for local action (2021-2026) provides guidance on how to improve palliative and end of life care and it is incorporated into the statutory guidance for Integrated Care Boards (ICBs). A team (Erica Borgstrom, Claire Henry MBE, Joanne Jordan, and Una St Ledger) have conducted two projects examining how people understand and use the Ambitions. They have produced several reports and resources to support people who want to realise the Ambitions. The research was funded by NHS England/NHS Improvement and Marie Curie.

Visit the Ambitions for Palliative and End of Life Care website

 

Evaluating Innovative End of Life Doula Provision

A team of researchers (Erica Borgstrom, Kirsten Bashir, Catherine Pestano, and Esther Ramsey-Jones) are working with End of Life Doula UK to evaluate their service provision in the Leeds area following an innovative commissioning arrangement between the organisation and the NHS. As part of the project, the team have developed a survey to measure impact of doula support and a case study vignette template to capture a rich picture of who the doulas are supporting and the kinds of support they offer. The project is HEIF KTV (Knowledge Transfer Voucher) funded enabling knowledge exchange between the organisation and the university.

 

Bereavement in Higher Education Institutes

Very little is known about the bereavement experiences of staff in Higher Education Institutes (HEIs), despite bereavement being a common experience and one that can impact both one’s wellbeing and work performance. Members of Open Thanatology (Erica Borgstrom, Claire A Harris, Kerry Jones and Sharon Mallon) have surveyed staff across universities, open to all levels and roles, to find out more about staff knowledge of their institutions’ policies and their own bereavement experiences. This is part of a larger body of work that Dr Borgstrom is leading to improve bereavement experience in higher education institutes focusing on policy, training, and compassionate, supportive environments.

Specialist bed in hospital ward

Narratives of Death, Grief and Loss during Covid-19

A co-edited collection by Dr Erica Borgstrom and Dr Sharon Mallon featuring authors all related to the Open University (students, staff and alumni). The current pandemic has brought death and grief to the forefront of the news and people’s daily experiences. This book captures first-hand accounts of loss that reflect the things which have challenged us, and those which have helped us to cope. By soliciting contributions from within the OU family, the editors have also sought to generate a sense of community and provide a space for individual and collective grief within the university. The edited collection is expected to be published in late 2021.

 

Coronavirus pandemic: reviews of existing literature

As a result of the pandemic, members across the research group have been conducting a range of review related to topics of death, grief, and funeral practices. Dr Kerry Jones has led on a rapid review to explore the impact of the pandemic on the grief experiences and mental health of children and young people, in particular death anxiety. We found that children and young people are potentially very vulnerable to the emotional impact of traumatic events that disrupt their daily lives. Key areas of concern include: Death anxiety, and fear of infection; lack of social interaction and loss of routine. Another rapid review led by Dr Kerry Jones involved the care home staff emotions, stressors and coping with death during viral outbreaks. Most studies indicated that viral outbreaks have a negative psychological impact for care workers, although one study suggested such outbreaks can foster resilience and staff reflection. There is some indication that these impacts can be sustained over time. There was a lack of discussion about the impact of grief. Additional reviews are ongoing amongst the wider Open Thanatology team. An overview of several of these are written in this article by Dr Kerry Jones, Dr Sharon Mallon and Dr Erica Borgstrom.

 

Death Anxiety among Children and Young People During Covid-19: An exploratory study identifying strategies of support

Dr Kerry Jones with Dr Ben Hughes are exploring children and young people’s (age 9-16) of death anxiety during the Covid-19 pandemic. Of interest is the extent to which Covid-19 pandemic has uprooted ‘normal’ life, causing children and young people to experience unexpected emotional turmoil including death anxiety. The aim is to gather knowledge through personal stories and experiences of those involved in the first stage of the study (adolescents) and thus, investigate the human face of death anxiety in children and young people during the Covid-19 pandemic.

 

COVID-19: Vulnerable young people living with life-limiting/life-threatening conditions and their families: A study of the non-intended consequences of epidemic control decisions

Dr Sarah Earle and Dr Maddie Blackburn are working with co- researchers, other academics and charitable organisations on this empirical study of the impact of pandemic mitigation measures on young people living with life-limiting/life-threatening conditions and their families.

 

Sex, Intimacy and young people with life-limiting conditions

Dr Maddie Blackburn and Dr Sarah Earle worked with the Adversi Team to create an OpenLearn resource, Let’s Talk about. Sex, intimacy and relationships. Research completed and publications to date included on The Open Learn portal. With others, a winner of the Learning on Screen Awards 2020.

 

Nursing students’ experiences of working with the dead, dying and the dead body

Dr Kerry Jones, Prof Jan Draper, and Nerys Boulton are interviewing OU nursing students’ about their experiences of providing end of life care and managing a dead body following an international scoping review of the literature on nurses early encounters with death and dying.

Parents holding hands, holding a pair of baby shoes

Exploring potential bereavement interventions with infant bereaved mothers in hard to reach communities

Dr Becky Garcia and Dr Sam Murphy are exploring potential bereavement interventions with infant bereaved mothers in hard to reach communities in Leicester and Luton.

Specialist bed in hospital ward

Forms of care

Forms of Care is a project about the differing medical logics that are adopted during end of life and palliative care. In particular, the research will focus on ‘not doing’ as an active and often deliberate aspect of care. (http://blogs.lshtm.ac.uk/formsofcare)

People meeting at a desk

InGaP: Practices, issues and possibilities at the interface between Geriatrics and Palliative Care in the last year of life: an exploratory study

This is a scoping study by Professor Richard Holti and Dr Erica Borgstrom to understand how geriatric medicine and palliative care services work together in one hospital trust for patients on an Older Persons Unit ward who may be in their last year of life.

Graphic image of sad male silhouette breaking apart

Men and loss

Kerry Jones (with Martin Robb) has undertaken a scoping review of men and loss following perinatal death. They are currently planning a bid (with Sam Murphy) to interview men and analyse about their experiences.

Further research covers the topics of work on suicide; decision making for people with dementia in care homes; and education for midwives around stillbirth. We are also interested in developing future projects exploring end of life care and bereavement for people with learning disabilities (Tilley), as well as student nurses’ first encounters with the dying/dead body.

Postgraduate work

We also have a number of PhD students exploring issues such as sexuality and young people with life-limiting conditions, the role of volunteers in hospice settings, and access to hospice end of life care for marginalised groups (a co-funded studentship with Willen Hospice). We are actively exploring other opportunities for co-funded studentships with partner organisations. If you are interested please see further information on our Postgraduate pages.