Dr Sean HughesLecturer in Palliative Care
My research interests centre on palliative and end of life care. Specifically, I am interested in how services are organised and in the experiences of those who commission, manage, deliver and use them. Arising from many years as a specialist palliative care social worker, I have a particular interest in psychosocial palliative care and have a pending research grant application looking at social care delivery in the last year of life. I retain an interest in bereavement and in the specific palliative and end of life care needs of lesbian, gay, bisexual and trans people.
My research interests centre on palliative and end of life care and bereavement. In particular, I am interested in how services are organised and in the experiences of those who commission, manage, deliver and use them. My PhD explored continuity of care for people with advanced cancer and examined some of the tensions that exist between the policy rhetoric and actuality of service utilisation. My most recent research was on a 4 year, pan European, FP7 funded mixed methods study (InSup-C) examining best practice in integrated palliative care in advanced cancer and chronic disease. This study will report at an international invitational conference in Brussels in September 2016.
Data for InSup-C were collected using qualitative, semi-structured interviews with patients and carers, and group interviews with a range of professionals involved in care management and delivery. These data were augmented with PROMS questionnaires: POS, CANHELP Lite and with the Carer Reaction Assessment Scale. We also used a patient weekly diary over three months to capture the frequency of contact and the patient perception of the quality of the professional interventions they were exposed to. A detailed thematic qualitative analysis has been facilitated with NVivo data management software and descriptive statistics have been used to analyse quantitative data.
I have further research interests in psychosocial care in palliative and end of life care contexts and for those with a range of chronic, incurable illnesses. I had many years practice experience as a specialist palliative care social worker and counsellor. This leads me to remain curious about how social care, in particular, is organised, delivered and experienced towards the end of life in a range of progressive conditions. Much of direct care in the UK is now delivered by low paid, often minimally trained social care workers employed by private or independent sector agencies. I am interested in how these workers are selected, trained, updated and supported in the service they provide to people approaching the end of life and those close to them. This leads to an interest in the organisational systems and ethos of the agencies involved. Many of those requiring and using these services live alone or have minimal family support and I hope to research the implications of these circumstances on those concerned and, by implication, palliative and end of life services in this sector.
In addition to the above, I have on-going interests in bereavement including such questions as: how is this assessed, how do we identify and respond to prolonged grief, what are the most effective interventions for bereaved people and how should these be delivered? I am also interested in the specific palliative and end of life care needs of lesbian, gay, bisexual and trans (LGBT) people.
I have experience and expertise in qualitative case study and mixed methods approaches, and have additional interests in action research and grounded theory.
I am currently a lecturer in the International Observatory on End of Life Care. I teach on the blended learning PhD programme and co-convene DHR515: Philosophy of Research and DHR516: Theory and Methods: Choices for Health Research, which are both core programme modules.
I currently co-supervise five students on the blended learning PhD in Palliative Care. Their research interests include: the experiences of women with advanced breast cancer; palliative care in an Orthodox Christian context; the nursing response to the families of those near the end of life who can no longer drink; and the ‘good death’ in paediatric palliative care contexts. I am also co-supervising one traditional route PhD student researching the experiences of the family members of dying prisoners.
I am Admissions Tutor for the PhD in Palliative Care.
I am an associate editor for BMC Palliative Care and sit on the editorial board of The End of Life Journal (in association with the BMJ).
I am a reviewer for a number of journals in the palliative and end of life care field.
I am a member of Cumbria & North Lancashire Palliative Care Education Strategy Group.
Selected Publications Show all 29 publications
What are the fears and support needs of those living alone in the last year of life and who responds?
Hughes, S., Preston, N.J., Varey, S.E., Payne, S.A., van der Eerden, M., Schwabe, S., Busa, C., van Beek, K., Van Ende, S., Csikos, A., Groot, M. 30/09/2016
Towards integration of palliative care in patients with chronic heart failure and chronic obstructive pulmonary disease: a systematic literature review of European guidelines and pathways
Siouta, N., van Beek, K., Preston, N.J., Hasselaar, J., Hughes, S., Payne, S.A., Garralda, E., Centeno, C., van der Eerden, M., Groot, M., Hodiamont, F., Radbruch, L., Busa, C., Csikos, A., Menten, J. 13/02/2016 In: BMC Palliative Care. 15, 18, 12 p.
Using participatory action research to advance hospice care
01/11/2016 → 31/03/2019
Patient-centered integrated palliative care pathways in advanced cancer and chronic disease
01/11/2012 → 31/10/2016
BMC Palliative Care (Journal)
- International Observatory on End of Life Care