Author:
Walshe Catherine,Dunleavy Lesley,Preston Nancy,Payne Sheila,Ellershaw John,Taylor Vanessa,Mason Stephen,Nwosu Amara Callistus,Gadoud Amy,Board Ruth,Swash Brooke,Coyle Seamus,Dickman Andrew,Partridge Andrea,Halvorsen Jaime,Hulbert-Williams Nick
Abstract
Abstract
Background
Palliative care provision should be driven by high quality research evidence. However, there are barriers to conducting research. Most research attention focuses on potential patient barriers; staff and organisational issues that affect research involvement are underexplored. The aim of this research is to understand professional and organisational facilitators and barriers to conducting palliative care research.
Methods
A mixed methods study, using an open cross-sectional online survey, followed by working groups using nominal group techniques. Participants were professionals interested in palliative care research, working as generalist/specialist palliative care providers, or palliative care research staff across areas of North West England. Recruitment was via local health organisations, personal networks, and social media in 2022. Data were examined using descriptive statistics and content analysis.
Results
Participants (survey n = 293, working groups n = 20) were mainly from clinical settings (71%) with 45% nurses and 45% working more than 10 years in palliative care. 75% were not active in research but 73% indicated a desire to increase research involvement. Key barriers included lack of organisational research culture and capacity (including prioritisation and available time); research knowledge (including skills/expertise and funding opportunities); research infrastructure (including collaborative opportunities across multiple organisations and governance challenges); and patient and public perceptions of research (including vulnerabilities and burdens). Key facilitators included dedicated research staff, and active research groups, collaborations, and networking opportunities.
Conclusions
Professionals working in palliative care are keen to be research active, but lack time, skills, and support to build research capabilities and collaborations. A shift in organisational culture is needed to enhance palliative care research capacity and collaborative opportunities across clinical and research settings.
Publisher
Springer Science and Business Media LLC
Reference70 articles.
1. Keeley P. Improving the evidence base in palliative medicine: a moral imperative. J Med Ethics. 2008;34(10):757–60.
2. Kars MC, van Thiel GJ, van der Graaf R, Moors M, de Graeff A, van Delden JJ. A systematic review of reasons for gatekeeping in palliative care research. Palliat Med. 2016;30(6):533–48.
3. Dunleavy L, Walshe C, Oriani A, Preston N. Using the ‘Social Marketing Mix Framework’ to explore recruitment barriers and facilitators in palliative care randomised controlled trials? Narrative Synth Rev Palliat Med. 2018;32(5):990–1009.
4. Dunleavy L. Health care professional recruitment of patients and family carers to palliative care randomised controlled trials: a qualitative multiple case study. Lancaster: Lancaster University; 2021.
5. Aoun S, Slatyer S, Deas K, Nekolaichuk C. Family caregiver participation in palliative care research: challenging the myth. J Pain Symptom Manage. 2017;53(5):851–61.