- Understand the disparity between the outcomes used in trials of CT in palliative care populations and the range of patient reported benefits.
- Begin to develop with patients, therapists and family carers an outcome measure that minimises any mismatch between what patients’ seek and what is measured in clinical trials.
- Understanding palliative care needs in people with Young Onset Dementia (YOD)
Ali-Rose Sisk
Ali-Rose Sisk is a PhD student of the EMBED-Care team. She is supervised by Dr. Liz Sampson (primary supervisor), Dr. Kirsten Moore (secondary supervisor), Dr Nuriye Kupeli (secondary supervisor and Professor Jason Warren (tertiary supervisor). The project is funded by the Division of Psychiatry. Ali-Rose Sisk is a registered nurse specialised in neurology/neurosurgery who has completed a masters by research developing dementia educational interventions for undergraduate nursing students.
People with young onset dementia (YOD) experience significant inequity in access to appropriate care. These types of dementias are rarer, affecting 5% of those living with dementia in the UK (approximately 42,500 people). Rarer forms of dementia such as frontotemporal dementia are more prevalent than alzheimers diseases. Service provision is patchy and not always age appropriate. Carers have complex needs and are often balancing employment issues and young families in the context of a highly distressing disease which is non-normative for age. This PhD is sited in the proposed EMBED-Care programme, a major project examining palliative care needs and developing interventions to improve dementia care, adding value by enabling us to study in a relatively small but previously neglected group.
- Acceptance and Commitment Therapy (ACT) in advanced cancer patients: an in depth examination of therapeutic process
Sarah Davis
Sarah is undertaking a qualitative PhD in the patients' experience of illness in advanced cancer as part of a feasibility randomised control trial examining the use of a psychological intervention called Acceptance and Commitment Therapy (ACT) compared to Talking Control (TC) in which people can talk about their concerns. Negative thoughts and feelings are common in cancer and patients attempt to struggle to avoid them (experiential avoidance) may be counterproductive. ACT helps people tolerate uncomfortable feelings and behave in a healthier way. Qualitative analysis of recorded interviews will help to identify the main ways in which patients think and behave and see how changes may occur with ACT and the TC.
Primary supervisor is Dr Anne Lanceley, a senior lecturer in cancer nursing, UCL. Secondary supervisor is Dr Marc Serfaty, a clinical reader in psychiatry, UCL Division of Psychiatry.
The PhD is funded by Marie Curie Cancer Care
- Is there a role for technology in monitoring awareness in people with severe dementia
Justin Chan
As people with dementia approach the end of their lives they can experience symptoms including pain, agitation, anxiety and breathlessness. Ensuring comfort is a key underlying principle of palliative care however, people with severe dementia may not be able to express how they feel. There is increasing interest in technologies in end-of-life care in dementia, including pain monitoring and Bispectral index (BIS) technologies. BIS was initially developed to monitor anaesthetic depth during surgery. Limited pilot work has been undertaken in palliative care patients, but this has not been tested in people with dementia. The current PhD project attempts to explore the acceptability and feasibility of BIS technology and pain monitoring tools in people with dementia who are unable to communicate.
Justin is supervised by Dr Liz Sampson, Dr Jonathan Huntley and Professor Paddy Stone, who are based in the Division of Psychiatry, UCL. The PhD commenced in 2018 and is funded by Marie Curie: Care and Support through Terminal Illness.
- Understanding how prognostic decisions are made within a specialist palliative care multi-disciplinary team (MDT): a mixed methods approach
Andrea Bruun
This PhD studentship will involve mixed research methods to understand how members of the specialist palliative care team formulate and make a decision about the likely survival time, or a prognosis of a patient. The proposed research methods include a systematic review, conversation analysis of multi-disciplinary team (MDT) interactions regarding prognosis, and the completion of an online experimental study which will examine the decision making of doctors and nurses when presented with different prognostic advice (Judge Advisor System).
The primary supervisor for the PhD is Prof Paddy Stone, secondary supervisor is Dr Steven Bloch and tertiary supervisors are Dr Linda Oostendorp and Dr Nicola White. The project is funded by Marie Curie.
- Exploring spiritual care and the use of a measure of spiritual well-being with people from ethnic minority communities living with a terminal illness
Inayah Uddin
ESRC UBEL PhD studentship, co-funded by Marie Curie.
- Developing core outcomes for prognostic research in palliative care
Caitlin Spooner
Talking to advanced cancer patients and their families or informal caregivers about their prognosis (the likely course of their condition) is not easy. On one hand, providing an accurate prognosis means that patients and families/informal caregivers can prepare for the future and make decisions about their care. On the other hand, an inaccurate prognosis can increase anxiety, depression and decrease quality of life in patients, as well as their families/informal caregivers. There are different methods available to help clinician's estimate a patient's end-of-life prognosis (prognostication), however there is no specific method that is considered "the best". Furthermore, it is difficult to research which method is the most appropriate to use, as studies looking at the impact of different prognostic methods often measure different outcomes, so their results cannot be compared or combined.
This PhD project aims to develop a “Core Outcome Set” (COS) to assess the impact of end-of-life prognostication in palliative cancer care. A COS is a set of main outcomes that can be measured and reported in all studies of a health condition, allowing for the comparison, and combining of studies. The final core outcome set has the potential for translation into clinical practice, allowing for consistent evaluation of emerging prognostic algorithms, and improving communication of end-of-life prognostication. This study will also potentially facilitate the design of future clinical trials of the impact of prognostication in palliative care which are acceptable to key stakeholders, such as patients, caregivers, and clinicians.
Caitlin is supervised by Prof Paddy Stone, Dr Bella Vivat, and Dr Nicola White, who are based in the Division of Psychiatry at UCL. This project is co-funded by the ESRC and Marie Curie.
- An exploration of the relationship between grief, burden and the role of social support and co-ordinated care in family carers of people living with dementia.
Sophie Crawley
This PhD is being completed in the context of EMBED-Care; Empowering Better End of Life Dementia Care, and data was collected during workstream 3 (WK3); the cohort study.
Dementia can have a significant impact on families; 700,000 people in the UK care for somebody living with dementia and it is widely acknowledged that carers can experience significant emotional implications, including the experience of grief whilst the person with dementia is still alive.
A systematic review of the literature completed as part of this thesis found that particular demographic, psychosocial and care related characteristics are risk factors for grief. Findings suggest using new measures of grief that differentiate grief experiences from burden will enhance our understanding of grief and further research is needed to understand how the role of support influences grief and burden in this population. Therefore, the primary aim of this PhD was to explore how family carers in dementia experience grief, burden and support over time and into bereavement.
This PhD utilised a mixed methods design. Carers took part in a longitudinal study where standardised assessments were completed over the telephone or via Microsoft Teams. Assessments of grief, burden and support were completed at baseline (n=50), 4 months (n=16), 8 months (n=8), 12 months (n=10) and post death (n=6). A subsample of participants additionally participated in a one-off qualitative interview (n=8) to further explore how support impact on experiences of grief and burden. Descriptive analyses will examine the quantitative data, whilst thematic analysis will be used to analyse the qualitative interview transcripts. A joint display analysis will integrate findings from both the quantitative and qualitative data in a case study style (n=8).
Understanding how support impacts carers experiences of grief and burden will identify meaningful ways carers can be supported throughout the dementia trajectory.
Sophie is supervised by Dr Nuriye Kupeli, Dr Kirsten Moore and Professor Liz Sampson