EMBED-Care’s five PhD students are supervised by members of the EMBED-Care team with regular supervision and thesis committee meetings to provide them with expert guidance as their work progresses. Here our PhD students provide a summary of their progress to date:
Ali-Rose Sisk: Understanding palliative care needs for people with frontotemporal lobar degeneration (FTLD).
My PhD focuses on investigating unmet needs of those with young onset dementias (YOD). This aims to identify the prevalence of symptoms in people with Frontotemporal Dementia (FTD) which may contribute to ‘total pain’ and identify how this may impact on Quality of Life (QoL). I am currently completing the screening process for my systematic review, for which the protocol is available on PROSPERO:
I am working on my systematic review whilst currently working part-time as a nurse in a specialist dementia care home. I am preparing for my second thesis committee meeting in June.
Sophie Crawley: An exploration of experience of grief and unmet palliative care needs in family carers of people with dementia
My first Thesis Committee meeting was held in February, which was a great opportunity to discuss my aims and begin to refine my study questions.
Since then, I have begun my systematic review, titled ‘How is grief being measured in family carers of people with dementia and what factors are associated? A systematic review’ and registered the protocol on PROSPERO: https://www.crd.york.ac.uk/prospero/display_record.php?RecordID=165071
Databases have been searched and I am now screening full text papers for inclusion.
I have identified measures and questions to use to explore carers’ experiences of grief, and factors which may impact on grief such as social support. I have also started to consider the impact of Covid-19 on these factors, and how I might explore this with family carers.
Emel Yorganci: Identifying patterns in health service access and inequalities towards the end of life for people with dementia
My PhD involves working with large data sets. I am currently familiarising myself with data from the Clinical Record Interactive Search (CRIS). There are more than 19200 cases in this data set, which includes all patients over 50 years old with a dementia diagnosis and unplanned hospital admissions who were seen at the South London and Maudsley NHS Trust up to the end of March 2018.
The plan is to describe the patients’ unplanned hospital admissions and length of stay from the point of diagnosis up to March 2018 or the patient’s death.
I have been making good progress with my systematic review. This aims to identify all existing population-based quality indicators for the care of frail, older people and people with dementia who are approaching the end of life and to evaluate each indicator’s measurement properties and appropriateness for use. A total of 270 papers were read and screened by two reviewers of which 49 papers will be included in the review.
Juliet Gillam: Organisational interventions to improve palliative dementia care: Design, implementation and feasibility test
Since registering for my PhD in January, I have focused primarily on starting a systematic review which will inform the later stages of my project. The review is focused around eHealth interventions to support assessment and decision making for residents with dementia in care homes. I will be exploring the kinds of interventions currently being used in care homes, looking at findings surrounding effectiveness, and at the strategies that are being employed to ensure successful implementation. I have recently submitted my registration form to PROSPERO and am currently refining my search strategy. As for most, remote working as a result of the COVID lockdown has impacted work flow to some extent, but the continued support from my supervisors and the team has been excellent.
Jesutofunmi Aworinde: Exploring and testing the feasibility of using a Person-Centred Outcome Measure (PCOM) to facilitate shared decision-making on care and treatment between the person with dementia living at home, and their informal and formal caregivers
I am currently scoping the literature and preparing the protocol for my systematic review, which will focus on to understanding how person centred outcome measures are used in routine care of people with dementia to enable shared decision-making between people with dementia and/or their informal carers and care professionals to improve outcomes for the person with dementia. I will soon be registering the review on PROSPERO. Since my thesis progression committee in April, I have been refining my thesis protocol.