TY - JOUR
T1 - Understanding barriers and facilitators to palliative and end-of-life care research
T2 - a mixed method study of generalist and specialist health, social care, and research professionals
AU - Walshe, Catherine
AU - Dunleavy, Lesley
AU - Preston, Nancy
AU - Payne, Sheila
AU - Ellershaw, John
AU - Taylor, Vanessa
AU - Mason, Stephen
AU - Nwosu, Amara Callistus
AU - Gadoud, Amy
AU - Board, Ruth
AU - Swash, Brooke
AU - Coyle, Seamus
AU - Dickman, Andrew
AU - Partridge, Andrea
AU - Halvorsen, Jaime
AU - Hulbert-Williams, Nick
N1 - Funding Information:
This project is funded by the NIHR Palliative and End of Life Care Research Partnerships Funding Committee [NIHR135334]. The views expressed are those of the author(s) and not necessarily those of the NIHR or the Department of Health and Social Care.
Publisher Copyright:
© The Author(s) 2024.
PY - 2024/12/1
Y1 - 2024/12/1
N2 - 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.
AB - 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.
KW - Health Services Research
KW - Hospices
KW - Methodological Studies
KW - Palliative care
KW - Palliative Medicine
KW - Research
KW - Research Priorities
KW - Surveys and Questionnaires
UR - http://www.scopus.com/inward/record.url?scp=85196869942&partnerID=8YFLogxK
U2 - 10.1186/s12904-024-01488-2
DO - 10.1186/s12904-024-01488-2
M3 - Article
C2 - 38918771
AN - SCOPUS:85196869942
VL - 23
JO - BMC Palliative Care
JF - BMC Palliative Care
SN - 1472-684X
IS - 1
M1 - 159
ER -