Clinical nurse specialist role in providing generalist and specialist palliative care: A qualitative study of mesothelioma clinical nurse specialists

Our plain-English summary of Clinical nurse specialist role in providing generalist and specialist palliative care: A qualitative study of mesothelioma clinical nurse specialists, by C. Gardiner, M. Harrison, S. Hargreaves, et al (Journal of Advanced Nursing, 2022).

The study

• Authors: C. Gardiner, M. Harrison, S. Hargreaves, B. Taylor
• Journal: Journal of Advanced Nursing
• Published: 2022;78(9):2973-2982
• Cited by: 14 articles, as counted by NIH iCite
• Read it: PubMed · Publisher · Free full text

Abstract

Aim: To explore perspectives of Mesothelioma UK clinical nurse specialists (CNSs) on their role in providing palliative care for patients with mesothelioma and their families.

Design: A qualitative descriptive approach using focus group and interview methods.

Methods: Focus groups and semi-structured interviews were conducted with 16 Mesothelioma UK clinical nurse specialists using the online software Google Meet. Data collection was carried out in Jan-Feb 2021 and data were analysed using thematic analysis. The consolidated criteria for reporting qualitative research (COREQ) was used as the reporting guideline for this paper.

Results: Four main themes were identified from the data: Mesothelioma UK clinical nurse specialist role in relation to palliative care; joint working with specialist palliative care and community services; patients and family carer's willingness to engage with palliative care services; and the impact of COVID-19 on palliative care for mesothelioma patients.

Conclusion: This study provides valuable insights into palliative care needs in mesothelioma. Patients with mesothelioma and their families have significant palliative care needs throughout the course of their illness from diagnosis to the end of life. Mesothelioma UK CNS's play a crucial role in supporting patients' and families palliative care needs, and are highly skilled in providing this care.

Impact: By acknowledging the role of Mesothelioma UK CNS's in palliative care provision, and supporting collaborative working between specialist and generalist palliative care providers, there is the capacity to significantly improve palliative care in mesothelioma and improve outcomes for patients and their families.

© 2022 The Authors. Journal of Advanced Nursing published by John Wiley & Sons Ltd.

In plain English

This was a qualitative study, using focus groups and interviews, of Mesothelioma UK clinical nurse specialists in the UK. It did not study asbestos exposure or measure disease rates. Sixteen nurses took part in three online focus groups and three individual interviews, which the authors said was more than half of these nurses in the UK at the time. Fifteen of the 16 were women, and 6 had previous experience of working in palliative care. The nurses described 'being alongside' patients and family carers throughout their illness. Some reported that referrals to specialist palliative care had to go through district nurses, which duplicated assessments. Fear and stigma about palliative care were thought to delay some patients' access to services. The nurses said that during the COVID-19 pandemic it was harder to communicate without visual cues and touch, and that late presentation could mean patients missed treatment. In one area, staff shortages led to a waiting list for palliative care. The authors concluded that these nurses play a crucial role and are highly skilled. They noted that the study was UK-only and that COVID-19 restrictions prevented face-to-face data collection.

We wrote this plain-English summary from the full article with the help of AI, and a second AI model checked each sentence against the article. It is not the authors' wording; the abstract and the article are their own account.

What the study did and found

• Design: Qualitative descriptive study using focus groups and semi-structured interviews, analysed by thematic analysis
• Who was studied: 16 Mesothelioma UK clinical nurse specialists in the UK, out of 30 invited; they took part in three online focus groups and three individual interviews
• Exposure: Not an asbestos exposure study. The subject was the nurses' views on their role in palliative care for patients with mesothelioma and their families. Asbestos is mentioned only in the background section.
• Main results:
  • The nurses emphasized 'being alongside' patients and family carers throughout the illness and described palliative care as integral to their role
  • Of the 16 participants, 15 (93.8%) were female and 6 (37.5%) had previous experience of working in palliative care
  • Where referrals to specialist palliative care had to go via district or community nursing services, this duplicated effort, because several nurses assessed the same patient
  • The nurses thought fear, stigma and negative connotations of palliative care led to delayed access to services for some patients
  • During the COVID-19 pandemic, remote care lacked visual cues and touch, and the nurses linked late presentation to patients missing treatment and, in some areas, not meeting the specialist nurse
  • In one area, staff shortages during the pandemic led to a waiting list for palliative care
• The authors' conclusion: The authors concluded that Mesothelioma UK clinical nurse specialists play a crucial role in supporting the palliative care needs of patients and families and are highly skilled in providing this care
• Limitations the authors state:
  • The study was conducted entirely in the UK, so its findings may not apply to other countries
  • The authors had intended to collect all data face to face, but COVID-19 restrictions prevented this. Focus groups were held by video call and interviews by video call or telephone, and the authors acknowledged the limitations of online communication.

Topics

The National Library of Medicine indexes this study under subjects our site covers: Mesothelioma.

Medical terms in this study, explained in our Lexicon: Palliative Care, Mesothelioma.

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