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
Research projects
Completed projects
Publications
Supervision
Current PhD Students
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.