About
With a background in nursing, I work as a Lecturer in Complex and End of Life Care. I am active in research in this field and focus my time and energies on exposing and tackling inequalities in access to end of life care, experiences of care quality, and the appropriateness of care through reasonable adjustments. I work with passion to expose and reduce inequalities in end of life and palliative care by increasing the visibility, and promoting the needs of people who are marginalised, overlooked or disadvantaged.
Research
Research groups
Research interests
- Measurement of quality and experiences of palliative and end of life care.
- Identifying and exploring sources of inequality and inequity in access to quality end of life care
- End of life care for people with intellectual disability and anticipating end of life
- Exploring the impact of unexpected death on bereavement
Current research
Development and testing of VOICES-Children, a questionnaire of the quality and experiences of end of life care for children, completed by bereaved parents.
A national survey of end of life care for people with intellectual disabilities during the COVID-19 pandemic
A scoping review of palliative and end of life care for people with End Stage Liver Disease who are actively drinking alcohol.
Research projects
Completed projects
Publications
Teaching
For the last ten years I have been actively involved in teaching health professionals about palliative and end of life care, clinical leadership, and research and enquiry in their clinical areas. I very much enjoy supporting health professionals to translate their clinical skills into research skills and find answers to their clinical questions through research.
I am also engaged in teaching pre-registration nurses about palliative and end of life care, as well as research methods and systamatic reviewing.
I am the module lead for e-Research Methods, a masters module that provides students with a practical foundation in research and prepares them to undertake research projects or a dissertation.
Biography
I have a particular interest in access to care and the quality of end of life care, taking a public health perspective to research on the end of life and bereavement. Being involved in the development of the VOICES-SF questionnaire and first national survey of end of life care, fuelled this interest and has led me to develop VOICES questionnaires for other, often overlooked groups. For instance, a version for people with intellectual disabilities formed the focus of the first nationally representative survey of end of life care for people with intellectual disabilities. Working with Prof Anne-Sophie Darlington and my PhD student Rawnaq Almahadeen, I am now developing a paediatric version of VOICES, VOICES-Children.
I am fascinated by disease and end of life trajectories for people with conditions other than cancer. This has brought me to research disease and care experiences for people with COPD, heart failure, kidney disease and liver disease as well as anticipation of end of life and end of life trajectories for people with intellectual disabilities.
I have an interest in theory and its role in health research. I recently developed Cognitive Authority Theory which aims to explain how people gain and express authority over their health, and maintain control over the factors that challenge their ability to do so. The theory is particularly helpful in exploring and explaining dynamics and power relations between patients and health professionals and the allocation of responsibility. My work in Burden of Treatment Theory has a complementary fit with Cognitive Authority Theory.
I have expertise in both quantitative and qualitative research designs and approaches, systematic reviewing, outcome measurement, survey and questionnaire design.