Palliative Care and the Role of Clinical Nurse Specialist

This study explored palliative care in mesothelioma, and looked at how Mesothelioma UK clinical nurse specialists meet those needs

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Final report 

The final report from this study is now available here

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.

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.

Publications

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

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

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