Following research and teaching at the University of Exeter in my role as Research Fellow for Death and Dying, I come to the OU with my more recent endeavours which have involved securing GW4 funds as a co-applicant with the universities of Bath, Bristol and Cardiff. concerning dying with reduced agency for people who experience dementia/traumatic brain injury ro frailty. The challenge of researching this topic and finding evidence of effective interventions of models of care at the end of life could be found in repvious research I conducted on suicide in Accident and Emergency Departments and the challenge [stress, anxiety, attitudinal] of handling such cases.
Other research on end of lfie care was undertaken while as a NIHR Research Fellow and together with palliaitive care consultants secured funds to conduct research on the challenges they have faced in initiating a policy (end of life care) that has been much maligned by both the media and the public. This research came about precisely due to the dearth of available literature which focuses upon the way in which both socially and culturally individuals, communities and society discuss and manage a critical aspect of the life course.
I have been concerned by a lack of discussion, research and adequate policy around these issues as well as contentious others, particularly mental health which needs much attention.
Conducting other novel research has evolved through various projects in which I have been qualitative lead on mixed methods studies concerning dementia (funded by MIND) and later with five European partners (Norway, Ireland, Finland, Lithuania and UK) concerning dementia.
Cross country studies called for a way of researching which was sensitive to those of participants, clinicians and national teams yet which could capture rich information that by and large had remained elusive to research at the time since it involved people with dementia as stakeholders and multidisciplinary groups of researchers.
As someone with a real interest in people's experiences and who they are supported, I trained as a therapist with the Iron Mill College a BACP accredited organisation. I specialised in Integrative Counsellign and hold a Post Qualifying Qualifcation in Counsellign Children and Adolescents. As well as previously working with various organisations in this role, I now have a private practice in which I work with clients [adolescents, adults].
My main area of research concerns end of life care across the life course including stillbirth neonatal death, paediatric palliaitive care, brain injury and dementia. I am interested in narratives of loss and experiences of grief and bereavement, in particualr the way in which a person's experience of grief and bereavement is mediated by the networks to which the bereaved relate and to the discourses of a culture.
More recently, work as the original lead applicant for Exeter together with Bath, Bristol and Cardiff on a GW4 initative led to a further accelerator grant with the four Russell Group universities.
Funding and Prizes
2014 GW4 Grant (Exeter lead and co-applicant with Bristol, Cardiff and Bath Universities) £ 1566, facilitator and leading to most recent accelerator £ 76,000
2013 Alzheimer Society Dementia Support Worker Project (co-investigator)
NHS Dementia challenge Fund and Plymouth City Council £15,864
2012 Initiating conversations for advance planning for End of Life Care (Co- Investigator) Royal Devon and Exeter Foundation Trust £10,000
Awarded University of Bristol Research Scholarship 2005 – 2008 £ 1000
Awarded British Sociological Association Phil Strong Memorial Prize 2006- 2007 £1000
Awarded the Robert Skills PhD Award 2007 – 2008 £1000
As a Lecturer on End of Life Care, I work with the K260 Death and Dying, K319 Ageing and Adulthood over the Lifecourse and K101 An Introduction to Health and Social Care.
In developing the death, dying and bereavement course at the Iron mill College (Exeter, Cardiff, Bath), I deliver workshops on the grief and bereavement and disenfranchised grief to professionals and therpaists who support individuals and their families at the end of their lives.
Previously, I taught on the Bacehlor of Medicine and Bachelor of Surgery (BMBS) and Medicalcal Sciences programme (i.e. through specialist workshops, Problem Based Learning, Special Skills Study Units, lectures, examination and assessment development, and academic reviews) at the University of Exeter Medical School. It is here where students have been encouraged to consider experiences of health and illness beyond the biomedical lens to a focus on the social and cultural determinants of health and illness over the life course.
Prior to this I was a Lectuer in Ageing at the University of the West of England and was a visting Lecturer at the University of Bristol in Social Work.
I am a Fellow of the Higher Education Academy
GW4 Dying with Reduced Agency
A strong community of twenty academics has evolved aorund a common concern with dying with reduced agency. Together through day long network meetings, website, blogs and tweets (1000 unique visitors) we have worked collaboratively on publications, grant proposals and co produced a conference and public engagement event.
Public and policy engagement
We set up a highly successful public engagement (visual artists, digital strorytelling) and held a one day conference which attracted 110 participants. Approximately, 200 people from organisations were involved in engagement, consultation and sharing consultations and who were from organisations concerned with support for people with reduced agency.
Outcomes and developments
Through GW4 we have developed a strong community and created intensive dialogue about our work. We have submitted six research bids [Wellcome Trust, BA Leverhulme, Dunmhill Medical Trust, Alzheimer's Society) with a further being developed specifically on dementia and decision making on the end of life. We have acheived a step change through focussing on methods through which we can give voice to this group of people and record their experienece and the process of how decisons happen. Two publications are due to be submitted.
A selection of recent papers [working and published]
Jones, K., Birchley, G., Clare, L., Hustable, R., Dixon, J., Walter, T. [in submission] Decision making at the end of life for people with dementia: A thematic analysis. BMC Medical Ethics
Jones, K., and Murphy, S. (in submission) Bereavement support and care following the death of a child
Jones, K., and Murphy, S. (in submission) Parent led care in the neonatal intensive care unit
Jones, K. (2014) Parental Identity in Narratives of Grief Following Perinatal Death. Grief Matters: The Australian Journal of Grief and Bereavement, 17, 2: 38-42
Murphy, S and Jones, K. (2014) By the way knowledge: grandmothers, stillbirth and neonatal death. Human Fertility 17 (3): 1-4. DOI: 10.3109/14647273.2014
Jones, K., Baines, R., Lang, I. (2014) Initiating Discussion in End of life Care: Clinician’s Perspectives. BMJ Supportive & Palliative Care (Suppl 1): A85. DOI: 10.1136/bmjspcare-2014-000654.244.
Jones, K (2013) Researching Sensitive Subjects Among a Vulnerable Population. Methodological Innovations Online 8 (1) 113-127
S. Richards, C. Jenkinson, A. Dickens, K. Jones, J. Thompson-Coon, R. Taylor, M. Rogers, C. Bambra, I. Lang OP74 Is 'volunteering' a Public Health Intervention: A Systematic Review and Meta-Analysis. Journal of Epidemiology & Community Health 67(Suppl 1):A35-A35 · September 2013. DOI: 10.1136/jech-2013-203126.74
Jones, K. (2012) Familial perspectives on end of life conversations on the special care baby unit. Minerva Pediatrica,64, 6, December
Caroline, E. Jenkison, Andy, P. Dickens, Kerry, S. Jones, Jo Thompson –Coon, Rod. S Taylor, Morwenna Rogers, Clare L. Bambra, Iain Lang. Is volunteering a public health intervention? A systematic review and meta-analysis of the health and survival of volunteers. BMC Public Health BMC Public Health.2013, 13:773.DOI: 10.1186/1471-2458-13-773 URL: http://www.biomedcentral.com/1471-2458/13/773
Soni, M, Kos K, Lang IA, Jones K, Melzer D, Llewellyn DJ. 2012. Vitamin D and cognitive function. Scand J Clin Lab Invest Suppl. 243:79-82.
GW4 Dying with Reduced Agency: People, places, policies and principles with the Universities of Bristol and Bristol and Bath.
Project team: Professor Richard Huxtable, PI, Centre for Medical Ethics, (Bristol), Dr Kerry Jones, CI, Faculty of Health and Social Care (Open University), Dr Jeremy Dixon,CI, Department of Social Work (Bath) Dr Giles Birchley, CI, Centre for Social and Community Medicine (Bristol)
Australian Centre for Death Education
International Children's Palliaitive Care Network