Palliative Care and the Role of Clinical Nurse Specialist

Study aims

This study explored the palliative care needs, outcomes and experiences of patients with mesothelioma and their family carers. It also explored how Mesothelioma UK Clinical Nurse Specialists (CNSs) seek to meet those needs in terms of the interventions they employ, care they provide and the ways they work with other health care providers.

You can read the final report for the study here.

Workstream 1

A literature review was undertaken of existing peer reviewed evidence using academic databases such as Medline and CINAHL, to establish the quantity and type of evidence about palliative care of patients with mesothelioma. Using this information we published an article about palliative care needs and experiences of people with mesothelioma.

Concurrently, we conducted a secondary analysis of existing data to gain additional insight into palliative care needs and the barriers and facilitators patients and their family carers encounter. Existing data for secondary analysis was drawn from three sources: (1) the 2012 National Mesothelioma Experience Survey of 652 patients conducted on behalf of Mesothelioma UK , (2) the 2019 Mesothelioma Outcomes Research & Experience (MORE) survey of > 500 patients, (3) qualitative data gathered as part of completed and ongoing research projects at the Mesothelioma UK Research Centre.

 

Workstream 2

Design: Cross sectional mixed methods study involving and on-line survey and qualitative focus groups.

Sample: All Mesothelioma UK CNSs in post at the time the study commenced and who consented to participation.

Data collection: With Mesothelioma UK we collaborated to develop a short on-line survey to administer to all Mesothelioma UK CNSs to establish the range of service configurations in which they work, their caseloads and key socio-demographic characteristics.

We then conducted focus groups with small groups of Mesothelioma UK CNSs in different regions to understand their support and development needs, the barriers and facilitators to palliative care they encounter, and their wider role in supporting, empowering and advocating for patients and carers. The findings from the focus groups have been published in a journal article which you can access here. The survey findings have also been published and can be accessed here. 

Publications

Hargreaves, S., Gardiner, C., Tod, A. and Darlison, L., 2023. Mesothelioma palliative care needs: supporting patients and families with new research-based resources. British Journal of Community Nursing, 28(5), pp.248-252.

Gardiner C, Harrison M, Hargreaves S & Taylor B (2022) Palliative care roles and responsibilities of mesothelioma clinical nurse specialists in the UK, Progress in Palliative Care, DOI: 10.1080/09699260.2022.2158286

Gardiner C., Harrison M., Hargreaves S. & Taylor B. (2022). Clinical nurse specialist role in providing generalist and specialist palliative care: A qualitative study of mesothelioma clinical nurse specialists. Journal of Advanced Nursing, 00, 1– 10. https://doi.org/10.1111/jan.15277

Harrison M, Gardiner C, Taylor B, Ejegi-Memeh S, Darlison L. Understanding the palliative care needs and experiences of people with mesothelioma and their family carers: An integrative systematic review. Palliative Medicine. April 2021. doi:10.1177/02692163211007379

Harrison M, Darlison L, Gardiner C. Understanding the Experiences of end of Life Care for Patients with Mesothelioma from the Perspective of Bereaved Family Caregivers in the UK: A Qualitative Analysis. Journal of Palliative Care. February 2022. doi:10.1177/08258597221079235

There are some resources about palliative care which give you more information:

• What is Palliative Care?  -  for professionals to share with patients and their families, which helps to explain and demystify what palliative care means.
• Mesothelioma and Palliative Care -  for clinical teams, which aims to raise awareness of mesothelioma and the importance of talking about palliative care early on in the patient journey.
• The importance of palliative care following a cancer diagnosis - a short podcast below with the legal firm Irwin Mitchell where we discuss our research.

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As part of the Festival of Social Sciences 2023, we recorded a panel discussion titled 'Conversations about Palliative Care' which you can watch below.

The event brought together researchers, healthcare professionals, and people living with mesothelioma and their families for an open discussion about mesothelioma palliative care.

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For more information about the study contact principal investigator Dr Clare Gardiner (c.gardiner@sheffield.ac.uk).