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 in how social care for those living at home in the last year of life is delivered and expereinced. 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. I have a professional background in community-based services as a palliative care social worker, which drives my interest in psychosocial care towards the end of life.
In January 2019, I begin work on a new EU (Horizon 2020) study led by a Greek team. MyPal: Fostering Palliative Care of Adults and Children with Cancer through Advanced Patient Reported Outcome Systems, will utilise advanced information and communication technologies to improve patient/professional ‘closed-loop’ feedback with an overall aim of improving quality of life and a more integrated, patient-centred interface between people living with cancer and the professionals involved in their care. I co-lead the dissemination work stream for this study with Prof Sheila Payne.
In March 2019 I completed a 2.5 year project as Principal Investigator on an Action Research study examining the development of a new model of end of life care – Cottage Hospice – in collaboration with a hospice in the south of England. Papers arising from the results of this study are in preparation.
Between 2013 and 2016 I was involved in a pan European, FP7 funded mixed methods study (InSup-C) examining best practice in integrated palliative care in advanced cancer and chronic disease. 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. Qualitiative data were analysed thematically and descriptive statistics used to analyse quantitative data. A number of papers and presentations arising from this study are listed in my research outputs.
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 a lecturer in Palliative Care in the International Observatory on End of Life Care. I teach on the blended learning PhD programme and convene DHR517: Palliative Care: History, Policy and Practice.
I co-supervise 12 students on the blended learning PhD in Palliative Care. Their research studies include: the experiences of women with advanced breast cancer; the experiences of families of those near the end of life who can no longer drink; the ‘good death’ in paediatric palliative care contexts; voluntarily stopping eating and drinking to hasten death; and what influences referral to paediatric palliative care by oncologists and haematologists. I am also co-supervising one traditional route PhD student who is planning to research the experiences of fathers with young children during the cancer trajectory of a partner and following their death.
I am Admissions Tutor for the blended learning PhD in Palliative Care.
I am an associate editor for BMC Palliative Care.
I am a reviewer for a number of journals in the palliative and end of life care field.
I am a member of Morecambe Bay Palliative Care Education Strategy Group.
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.
H2020 : MyPal: Fostering Palliative Care of Adults and Children with Cancer through Advanced Patient Reported Outcome Systems
01/01/2019 → 30/06/2022
MyPal: Fostering Palliative Care of Adults and Children with Cancer through Advanced Patient Reported Outcome Systems
01/01/2019 → 30/06/2022
MOOC Palliative Care: Making it Work
02/07/2018 → 28/07/2018
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