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

Our plain-English summary of 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, by M. Harrison, L. Darlison, C. Gardiner (Journal of Palliative Care, 2022).

The study

• Authors: M. Harrison, L. Darlison, C. Gardiner
• Journal: Journal of Palliative Care
• Published: 2022;37(2):197-203
• Cited by: 6 articles, as counted by NIH iCite
• Read it: PubMed · Publisher · Free full text

Abstract

Objectives: Mesothelioma is a rare, progressive cancer with a short trajectory from diagnosis to the end of life. This study explores the experiences of palliative and end of life care for patients with mesothelioma from the perspective of bereaved family caregivers. Methods: A qualitative, descriptive approach was adopted comprising face-to-face, semi-structured interviews with bereaved caregivers of patients with mesothelioma in the UK. An inductive, thematic analysis was conducted using the 'Framework' approach. Results: Nine bereaved caregivers participated. Four themes emerged: understanding what lies ahead; carer support; care co-ordination; managing after death: practicalities, inquests and abandonment. Caregivers need to understand what lies ahead in order to emotionally and practically prepare themselves for supporting the patient at the end of life. Information and support needs of caregivers were often distinct from those of patients, including the importance of information about the coroner's involvement. The importance of care co-ordination was emphasised, with caregivers valuing on-going relationships and a named individual taking responsibility for co-ordinating the patients care. Feelings of abandonment arose when there was no contact with healthcare professionals following the death of the patient. Conclusions: Greater opportunity for open, one-to-one communication between family caregivers and healthcare professionals is vital to enable the caregiver to prepare for what lies ahead at the end of life and prevent feelings of abandonment after the death of the patient. Improved care co-ordination and partnership working are essential for supporting both patient and caregiver at the end of life.

In plain English

In this qualitative study, the authors interviewed, face to face, nine of 17 bereaved family caregivers contacted through one hospital trust in the East Midlands of England in 2014. All nine had been the main carer for a spouse or partner who died with mesothelioma; all patients were men. Four themes emerged: understanding what lies ahead, carer support, care co-ordination, and managing after death. Caregivers wanted more information than patients about expected survival and the end of life. They felt they had little opportunity to talk with health professionals without the patient present. They valued having a single person co-ordinating care, but more often described fragmented care. Most had been told the coroner would be involved and found this helpful. For some, the civil legal claims process was an ongoing cause of distress. Some felt abandoned when contact with health staff stopped after the death. The authors concluded that family carers should have the chance for open, one-to-one communication with health professionals. Limitations the authors noted included an interviewer known to the patients clinically, likely recall bias, and recruitment from one hospital.

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 semi-structured, face-to-face interviews, analysed thematically with the 'Framework' method
• Who was studied: Nine bereaved primary caregivers, out of 17 contacted. All were spouses or partners of patients who died with mesothelioma. They were recruited in 2014 from one large acute NHS hospital trust in the East Midlands of England. There was 1 male and 8 female carers, and all 9 patients were male.
• Main results:
  • Four themes emerged from the interviews with the nine caregivers: understanding what lies ahead; carer support; care co-ordination; and managing after death (practicalities, inquests and abandonment).
  • All nine patients were male.
  • Place of death among the nine patients: 3 died in hospital, 5 at home and 1 in a hospice.
  • Caregivers wanted more information than patients about how long the patient was expected to survive and what would happen at the end of life.
  • Caregivers felt they had little opportunity to talk with healthcare professionals without the patient present.
  • Friends and neighbours were a key source of emotional and practical support for all the caregivers in the study.
  • Caregivers highly valued having a single person responsible for co-ordinating the patient's care.
  • Caregivers more often described fragmented care.
  • Most participants had been told the coroner would be involved and said this helped them prepare.
  • For some carers, the civil (legal) claims process caused ongoing distress that continued after the patient's death.
  • Feelings of abandonment arose when contact with health care professionals stopped abruptly after the patient's death.
• The authors' conclusion: The authors concluded that family carers should be given the opportunity for open, one-to-one communication with healthcare professionals so they can prepare to support the patient at the end of life. They also concluded that improved care co-ordination is vital.
• Limitations the authors state:
  • The interviewer was known to the patients in a clinical capacity, though not involved in their end of life care. The authors said this might have affected willingness to share negative experiences.
  • Participants' accounts were likely affected by recall bias.
  • Some demographic data, such as patient occupation, age and level of education, were not collected.
  • All participants came from one hospital in the East Midlands of England, which may limit international transferability.
  • All the caregivers were caring for male patients.

Topics

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

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

Related studies

• Understanding the palliative care needs and experiences of people with mesothelioma and their family carers: An integrative systematic review — M. Harrison, C. Gardiner, et al. (2021)
• Bereaved Family Members' Perspectives of Good Death and Quality of End-of-Life Care for Malignant Pleural Mesothelioma Patients: A Cross-Sectional Study — Y. Nagamatsu, Y. Sakyo, et al. (2022)
• Dying of mesothelioma: A qualitative exploration of caregiver experiences — J.T. Lee, D.L. Mittal, et al. (2022)
• Palliative and end-of-life care for patients with pleural mesothelioma: A cohort study — D. Wakefield, T. Ward, et al. (2025)
• Clinical nurse specialist role in providing generalist and specialist palliative care: A qualitative study of mesothelioma clinical nurse specialists — C. Gardiner, M. Harrison, et al. (2022)
• Caregivers of patients with malignant pleural mesothelioma: who provides care, what care do they provide and what burden do they experience? — A. Moore, B. Bennett, et al. (2023)

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