Dying of mesothelioma: A qualitative exploration of caregiver experiences

Our plain-English summary of Dying of mesothelioma: A qualitative exploration of caregiver experiences, by J.T. Lee, D.L. Mittal, A. Warby, et al (European Journal of Cancer Care, 2022).

The study

• Authors: J.T. Lee, D.L. Mittal, A. Warby, S. Kao, H.M. Dhillon, J.L. Vardy
• Journal: European Journal of Cancer Care
• Published: 2022;31(5):e13627
• Cited by: 8 articles, as counted by NIH iCite
• Read it: PubMed · Publisher · Free full text

Abstract

Objective: To explore the experience of family caregivers of people with mesothelioma with focus on end-of-life issues.

Methods: A qualitative sub-study using semi-structured interviews and thematic analysis.

Results: Fourteen caregivers were interviewed; 11 were bereaved. The overarching theme was the impact of patients' diagnosis, treatment and death on caregivers and families. Three main themes were identified: (i) information provision and decision-making; (ii) grief and bereavement; and (iii) involvement and timing of palliative care. Caregivers initially had minimal knowledge of mesothelioma and wanted more information. Prognostic uncertainty caused distress. Grief and bereavement sub-themes were (i) coping and personal priorities; (ii) reflections on dying; and (iii) reflections on care. Caregivers highlighted the importance of creating meaningful events, having hope, 'doing something' and support from family and external sources. Reflections on dying contrasted regret after a 'bad', often unexpected death, with 'good' deaths. Care was made difficult by challenges navigating the health system and perceived gaps. Caregivers reported late referral to palliative care.

Conclusion: Lack of information caused challenges for caregivers. Grief and bereavement outcomes varied and may have been adversely impacted by lack of engagement with palliative care. Integrated care with lung cancer coordinators and improved palliative care access may reduce caregiver burden.

© 2022 The Authors. European Journal of Cancer Care published by John Wiley & Sons Ltd.

In plain English

This Australian study reanalysed interviews from a larger qualitative study to explore family caregivers' experiences of end-of-life care for people with malignant pleural mesothelioma. Fourteen caregivers (13 wives and one daughter), recruited through asbestos disease support and research organisations, were interviewed in 2013. Eleven were bereaved. Asbestos exposure was not studied. Caregivers described knowing little about mesothelioma at first, and uncertainty about prognosis caused them significant distress. They reported a gap between the information clinicians gave and the information they needed. Ways of coping included hope and support from family and from services. Some caregivers recalled a death they saw as 'bad' with regret, while others described 'good' deaths. Caregivers reported slow access to equipment and late or absent referral to palliative care. The authors concluded that lack of information caused challenges, that grief and bereavement may have been adversely affected by lack of early palliative care, and that better integrated care may reduce caregiver burden. They noted that all caregivers were Australian and female.

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 study: a secondary analysis of semi-structured interviews from a larger qualitative study, analysed with thematic analysis using a framework approach
• Who was studied: 14 family caregivers of people with malignant pleural mesothelioma (MPM), recruited through the Asbestos Diseases Foundation of Australia and the Asbestos Diseases Research Institute and interviewed January to June 2013 in Australia. 11 were bereaved and 3 were caring for a living patient. 13 were wives and 1 was a daughter. Median age was 65.5 years (range 51 to 79).
• Exposure: Not an asbestos exposure study. Participants were people providing informal care to a person with MPM, or who had done so before the person's death from MPM.
• Main results:
  • Across the 14 caregivers, three main themes were identified: information provision and decision-making; grief and bereavement; and involvement and timing of palliative care.
  • Uncertainty about prognosis caused caregivers significant distress.
  • Caregivers described a mismatch between the information clinicians provided and the information they needed, which led them to seek information from other sources.
  • No caregiver reported seeing best supportive or palliative care as a treatment option.
  • Hope was identified as important. The other major coping strategy was support, mainly from family and sometimes from professional services.
  • Some caregivers regretted a death they perceived as bad, while others recounted good deaths.
  • Caregivers reported slow access to equipment, leaving families without enough aids to manage patients at home.
  • Caregivers consistently reported late or absent referral to palliative care.
  • Once palliative care services were involved, caregivers said the services responded to their needs, including equipment and in-home care.
  • Some caregivers equated palliative care with the terminal phase of life, and associated discussing it with patients losing hope.
• The authors' conclusion: The authors concluded that caregivers faced major challenges linked to lack of access to information and difficult decision-making. They found that grief and bereavement outcomes varied and may have been adversely affected by lack of early engagement with palliative care. They suggested that better integrated care with experienced care coordinators and improved access to palliative care may relieve caregiver burden.
• Limitations the authors state:
  • The sample was all Australian, which may limit how well the findings apply elsewhere.
  • Some participants had been caregivers some time ago, so their experiences may reflect older practices.
  • This was a secondary analysis, and the interview questions did not focus specifically on the experience of caring.
  • All caregivers were female and most were spouses, so the authors could not comment on male or other family caregivers.
  • Rural caregivers were under-represented.

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, Lung Cancer.

Related studies

• A survey of patient and caregiver experience with malignant pleural mesothelioma — A. Warby, H.M. Dhillon, et al. (2019)
• "It sort of hit me like a baseball bat between the eyes": a qualitative study of the psychosocial experiences of mesothelioma patients and carers — S. Girgis, A. Smith, et al. (2019)
• Living with mesothelioma: A qualitative study of the experiences of male military veterans in the UK — S. Ejegi-Memeh, L. Darlison, et al. (2021)
• Managing malignant pleural mesothelioma: experience and perceptions of health care professionals caring for people with mesothelioma — A. Warby, H.M. Dhillon, et al. (2019)
• Individual experiences and impacts of a physiotherapist-led, non-pharmacological breathlessness programme for patients with intrathoracic malignancy: a qualitative study — H. Wood, S. Connors, et al. (2013)
• The psychosocial impact of living with mesothelioma: Experiences and needs of patients and their carers regarding supportive care — A. Prusak, J.M. van der Zwan, et al. (2021)

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