Dr Sean Hughes
Senior Research Associate (Rosemere)Research Overview
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 experienced. I retain an interest in bereavement and in the specific palliative and end of life care needs of lesbian, gay, bisexual and trans people.
Research Interests
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.
I am currently working on a qualitative study in collaboration with clinical colleagues at the Rosemere Cancer Centre in Preston. The study is exploring cancer patient preferences for advance care planning (ACP) and aims to complete by the end of 2024.
In January 2019, I began 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, is studying 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 and mixed methods approaches, and have additional interests in action research, grounded theory and interpretative phenomenological analysis (IPA).
Current Teaching
I was a lecturer in Palliative Care in the International Observatory on End of Life Care between 2015 and 2021 and taught on the blended learning PhD programme. I co-convened Palliative Care: History, Policy & Practice; Theories & Methods in Health Research; and was lead convenor on the Philosophy of Research module.
I co-supervised 10 students on the blended learning PhD in Palliative Care. Their research studies included: the experiences of families of those near the end of life who can no longer drink; what influences referral to paediatric palliative care by Indian oncologists and haematologists; expressing end of life care preferences in a Nigerian context; the concept of a 'good death' in a child in Singapore; and the experiences and support needs of direct social care workers in Scotland. I have supervised seven students to completion of their PhD.
Additional Information
I was Admissions Tutor for the blended learning PhD in Palliative Care between 2014 and 2021.
I am a reviewer for a number of journals in the palliative and end of life care field.
I am a memeber of the EAPC Task Force on ‘Improving palliative and end of life care for LGBT+ people’
Selected Publications
Experiences of breast cancer in Arab countries: a thematic synthesis
Fearon, D., Hughes, S., Brearley, S. 1/02/2020 In: Quality of Life Research. 29, 2, p. 313-324. 12 p.
Journal article
The experiences of family members witnessing the diminishing drinking of a dying relative: An adapted meta-narrative literature review
Pettifer, A., Froggatt, K., Hughes, S. 1/10/2019 In: Palliative Medicine. 33, 9, p. 1146-1157. 12 p.
Journal article
Perceptions of a Good Death in Children with Life-Shortening Conditions: An Integrative Review
Chong, P.H., Walshe, C., Hughes, S. 1/06/2019 In: Journal of Palliative Medicine. 22, 6, p. 714-723 . 10 p.
Journal article
Team approaches in palliative care: a review of the literature
Fernando, G.V.M.C., Hughes, S. 2/09/2019 In: International Journal of Palliative Nursing. 25, 9, p. 444-451. 8 p.
Journal article
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.
Journal article
All Publications
Understanding Oncology Patients Preferences for Advance Care Planning
01/01/2024 → 31/12/2024
Research
H2020 : MyPal: Fostering Palliative Care of Adults and Children with Cancer through Advanced Patient Reported Outcome Systems
01/01/2019 → 31/12/2022
Research
MyPal: Fostering Palliative Care of Adults and Children with Cancer through Advanced Patient Reported Outcome Systems
01/01/2019 → 30/06/2022
Research
MOOC Palliative Care: Making it Work
02/07/2018 → 28/07/2018
Other
Using participatory action research to advance hospice care
01/11/2016 → 31/03/2019
Research
Patient-centered integrated palliative care pathways in advanced cancer and chronic disease
01/11/2012 → 31/10/2016
Research
BMC Palliative Care (Journal)
Editorial activity
- International Observatory on End of Life Care