Methodology

The study examines the metaphors used by patients, unpaid family carers and healthcare professionals in a 1.5-million-word data set consisting of interviews and contributions to online fora.

The study focuses on metaphors as these are often used in describing complex, emotional, subjective and taboo experiences – they can convey more, more vividly, but very concisely. Any systematic patterns can shed light on the nature of the experiences, attitudes, and needs of the members of each group and identify areas where increased anxiety or misunderstanding can occur.

This small study aims to develop research capacity in palliative care. There are a number of barriers to developing research in palliative care not least attitudes of staff and ethics committees towards including vulnerable patients at the end of their life in research.

We interviewed staff from a research active hospice about their experience of being involved in research. We are then going to present the findings of this study as well as other research pertinent to developing research capacity at three one day conferences in local hospices; St. Catherine's in Preston, Trinity in Blackpool and Eden Valley in Carlisle.

Power point slides from the conferences are available through the Resources box below.

Recruitment is a problem for all researchers with an estimated 50% of studies reaching their recruitment targets (Treweek 2010). These numbers are lower for palliative and end of life care research. Since the introduction of the data protection act in the UK researchers can only access participants through healthcare providers. Researchers are then reliant upon health care staff to identify suitable participants and ask them if they can be approached to meet the researcher.

The Cancer Experiences Collaboration (CECo) methodology theme decided to conduct a review to identify potential strategies to improve recruitment via healthcare professionals. The review is registered with the Cochrane Methodology Group and involves researchers from Lancaster University, University of Manchester, University of Cambridge, Loughborough University and the University of Cardiff.

The role of users or patient and public involvement in research is increasingly being recommended in the UK. Users can have an impact on the design, conduct and analysis of research. We have worked with service representatives as research partners through the Cancer Experiences Collaborative and we are evaluating the impact of being involved in such work through a qualitative study. Interviews have been undertaken with eight participants and analysis of the data is underway.