Developing palliative care research within North West Coast (V 1.0)

  • Research type

    Research Study

  • Full title

    Developing palliative and end-of-life care research partnerships and capacity in the North West Coast of England

  • IRAS ID

    310963

  • Contact name

    Catherine Walshe

  • Contact email

    c.walshe@lancaster.ac.uk

  • Sponsor organisation

    Lancaster University

  • Clinicaltrials.gov Identifier

    N/A, N/A

  • Duration of Study in the UK

    1 years, 4 months, 30 days

  • Research summary

    Background

    Research is important as it underpins excellent care, with health and social care organisations involved in research activity known to provide better care. However, in the North West Coast area of England we know that research activity in the important field of palliative and end-of-life care is much lower than in other parts of the country. This is despite much higher needs than on average. It is important that we invest in research in North West Coast England to ensure that the particular needs of the populations in this area are properly taken account of, and that care is planned and provided to meet these needs in the best possible way.

    Aims

    This study aims to understand what the main barriers are to palliative care research within the North West Coast area of England and how they can be overcome.

    Online survey

    An online survey will be circulated to palliative care providers and research staff across North West Coast. This is to identify how ‘research ready staff’ are, current local research barriers and how these barriers maybe overcome.

    Working groups

    A small number of working groups will also be held with palliative care providers and research staff and patients, family carers and community representatives to explore these issues in more depth. Participants will be recruited from all settings including Universities, hospices, hospitals, primary care, nursing/care homes, research networks and via our patient and public involvement lead/group.

    Patient and public involvement

    Patient and public involvement has been central to the development of this project and will actively be involved in recruitment, data collection, analysis and dissemination.

    This study contributes to wider efforts to help increase palliative care research activity within the North West Coast area of England. The study is funded by the National Institute for Health Research (Ref: NIHR135334).

    Summary of Results

    Who participated in the study?

    Palliative care providers or research staff working in the North West Coast region from all settings including universities, hospices, hospitals, primary care, nursing/care homes and research networks.

    What happened during the study?

    Online survey

    An online survey was circulated to palliative care providers and research staff across North West Coast. This was to identify how ‘research ready staff’ were, current local research barriers and how these barriers maybe overcome.

    Working groups

    Four working groups took place with palliative care providers and research staff to explore these issues in more depth.

    What were the results of the study?

    293 palliative care providers and research staff took part in the survey and 20 in the working groups. Just under half of those who took part in the survey were nurses and just under half had worked more than 10 years in palliative care. Three quarters of those who took part in the survey were not active in research but just under three quarters said they would like to be more involved in research.

    The type of barriers staff told us about included; not having the time, skills, expertise or funding opportunities to be involved in research and organisations not seeing research as a priority. They said they had limited opportunities to collaborate with other professionals and organisations. Structures to support research could also be lacking in non-NHS organisations like in hospices. Concerns about patient burden and vulnerabilities could also be a barrier.

    The type of things they said would help included having dedicated research staff, and active research groups, collaborations, and networking opportunities.

    How has this study helped patients and researchers?

    The findings are being used as a basis for developing resources to support Hospice research.

    Patient and public involvement

    There was an experienced patient and public involvement lead in this study with lived experience of cancer and end of life care. They were a member of the study steering committee. They helped set up a group of four other representatives with lived experience of caring for someone with palliative care needs. There was patient and public involvement in the ethics application, study findings, website and other activities such as publications and presentations.

    Details of any further research planned

    The findings are being published and presented at national and international conferences. The findings are being used to develop activities to address some of the barriers staff told us about such as networking opportunities for staff.

    Where can I learn more about this study?

    For more information about the study please see the project website https://gbr01.safelinks.protection.outlook.com/?url=https%3A%2F%2Fu2790089.ct.sendgrid.net%2Fls%2Fclick%3Fupn%3DXv3JSvJ-2B3M71ppf7N9agbeaaly12zq1AdscKTZe9HF7I2BG-2FDWBp57-2Bc6AN6hhJuWuvzCTqiWpSojlvsIYGP5A-3D-3DaS2U_E1aO2-2BZlVOSJJV-2FajQqskegTd6IRomHYTi-2Fbt8SH3YIz85L-2FZKkoSZhnNHg4qrijbqSShzBgMlhclN1Uh47enWH0Zjl1b-2FiFUVkdn7gTNVFgcTks-2FK4JN5oydo5a-2B5-2FOAt-2B-2Fb72j62Z-2F5NiYyFDknauP-2Bty6qKRhg3JgEThXPr4fxfoHFNfasyh-2FXJKVfs7iHDXsnamXP70a8YZWFjxTmg-3D-3D&data=05%7C01%7Ccambridgesouth.rec%40hra.nhs.uk%7Ce8935276350f4af15e6208db885e036b%7C8e1f0acad87d4f20939e36243d574267%7C0%7C0%7C638253709585881265%7CUnknown%7CTWFpbGZsb3d8eyJWIjoiMC4wLjAwMDAiLCJQIjoiV2luMzIiLCJBTiI6Ik1haWwiLCJXVCI6Mn0%3D%7C3000%7C%7C%7C&sdata=%2FY2aZGKpPVgifR8%2BSmU8Z1RuWLSA2lMe0ExheQv8n9Y%3D&reserved=0 or contact Professor Catherine Walshe, International Observatory on End of Life Care, Lancaster University c.walshe@lancaster.ac.uk

  • REC name

    East of England - Cambridge South Research Ethics Committee

  • REC reference

    22/EE/0049

  • Date of REC Opinion

    25 Feb 2022

  • REC opinion

    Further Information Favourable Opinion