Overcoming barriers to research in palliative care : results from a consensus exercise

Preston, Nancy and Dunleavy, Lesley and Rigby, Janet and Griggs, Anita and Salt, Susan and Parr, Alison and Payne, Sheila (2014) Overcoming barriers to research in palliative care : results from a consensus exercise. Palliative Medicine, 28 (6). p. 745. ISSN 0269-2163

Abstract

Aim: Recruitment of palliative care patients to research studies can be problematic. The aim was to generate recommendations about removing barriers to research in the palliative care setting. Methods: Three workshops were held in the UK (77 palliative care staff and patient representatives). There were presentations about the need for palliative care research and discussion around potential barriers. Nominal groups were held to make recommendations about how to overcome barriers and suggest areas for research. Each person made recommendations which were collated on a flip chart. Recommendations were sent out in an online survey to participants who were asked to rank how much they agreed with them on a scale from 1-9 (1 strongly disagree-9 strongly agree). Median scores and inter-quartile ranges (IQR) were calculated to assess consensus. Results: The top three recommendations to improve research in hospices were (Median:IQR): 1. Hospices and palliative care units should collaborate with each other in research and share best practice (9: 0.25) 2. A research culture needs developing (9:1) 3. Results from research needs to be presented to staff and patients (9:1) 4. National guidelines for research governance in hospices need developing (8.8:1) 5. A public health campaign is required to promote the need for research in palliative care (9:2.25) The main areas recommended for research were to establish the experiences of palliative care patients of out of hours services (8.5:2.75), experience of parents caring for children (8:2), whether palliative care is cost effective (8:2.75) and what is the impact on palliative care for people with no local support (8:2.75). Conclusion: Workshops raised awareness of the need for research in palliative care and allowed staff to generate their own solutions to overcome barriers, in particular improving recruitment. Networking was highlighted as key and is reflected in the recommendations.