The psychosocial impact of living with mesothelioma: Experiences and needs of patients and their carers regarding supportive care

Our plain-English summary of The psychosocial impact of living with mesothelioma: Experiences and needs of patients and their carers regarding supportive care, by A. Prusak, J.M. van der Zwan, M.J. Aarts, et al (European Journal of Cancer Care, 2021).

The study

• Authors: A. Prusak, J.M. van der Zwan, M.J. Aarts, A. Arber, R. Cornelissen, S. Burgers, S.F.A. Duijts
• Journal: European Journal of Cancer Care
• Published: 2021;30(6):e13498
• Cited by: 14 articles, as counted by NIH iCite
• Read it: PubMed · Publisher

Abstract

Objective: Mesothelioma is a rare cancer with a poor prognosis caused by exposure to asbestos. Psychosocial support and care for mesothelioma patients and their carers is limited and not tailored to their specific needs. The aim of this study was to explore patients' and carers' needs and experiences regarding psychosocial support and their coping mechanisms dealing with psychosocial problems.

Methods: A qualitative study was performed using semi-structured interviews with both mesothelioma patients and their carers. Participants were recruited through two specialised hospitals and two patient organisations. All interviews were transcribed verbatim and thematically analysed.

Results: Ten patients (70% male, mean age 67.7) and five carers (20% male, mean age 65) participated in the study. The main themes identified for patients were active coping, limited needs and limited knowledge and awareness about psychosocial support. The main themes for carers were passive coping and 'it's all about the patient'.

Conclusion: Mesothelioma patients do not seem to have high needs for psychosocial support, whereas carers do. However, knowledge about and awareness of psychosocial support is low among mesothelioma patients. The findings from this study should be used to adjust guidelines for psychosocial support in mesothelioma patients and their carers.

© 2021 John Wiley & Sons Ltd.

In plain English

In this qualitative study from the Netherlands, researchers interviewed 10 mesothelioma patients (70% male, mean age 67.7) and five carers, all first-degree relatives of patients (20% male, mean age 65). Participants were recruited through the country's two specialised mesothelioma hospitals and two patient organisations. Because of COVID-19, all interviews were held by phone or Skype. Five of the 10 patients reported asbestos exposure through work. Almost all patients described active coping, such as arranging practical matters or euthanasia, and most applied for financial compensation. Most indicated limited need for professional support, relying on family and friends. Many did not understand what psychosocial support involved. Carers tended to put their own feelings aside, which the authors called passive coping. Carers whose loved one was treated in a peripheral hospital said they had not been offered any type of psychosocial support. Carers indicated a need for support, especially after the patient's death. The authors concluded that carers' needs should be acknowledged and patients' awareness of psychosocial support raised. They cautioned that more active, talkative patients may have volunteered and most participants came from specialised centres.

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 using semi-structured interviews with open-ended questions, analysed by thematic analysis
• Who was studied: 10 mesothelioma patients (70% male, mean age 67.7, SD 10.9) and 5 carers who were first-degree relatives of patients (20% male, mean age 65, SD 13.2), in the Netherlands. They included three patient-carer pairs, and two carers whose loved one had already died. Participants were recruited through the Antoni van Leeuwenhoek Hospital, Erasmus University Medical Centre and two patient organisations. Interviews were held during the COVID-19 outbreak.
• Exposure: The study examined psychosocial experiences, not asbestos exposure. As background, Table 1 reports self-reported asbestos exposure. For patients: through work 5 (50%), outside of work 2 (20%), unknown 3 (30%). For the patients of the carers: through work 2 (40%), outside of work 2 (40%), unknown 1 (20%). No fiber types are given.
• Main results:
  • Patients: almost all described an active coping mechanism after diagnosis, for example arranging practicalities for their families and/or arranging euthanasia.
  • Patients: anxiety about choking to death was described as the main reason for arranging euthanasia, because they wanted to control their way of dying.
  • Patients: most immediately applied for financial compensation from the Dutch Institute for Asbestos Victims, and some took legal action against a former employer. They said this helped them cope.
  • Patients: although some described psychosocial problems such as difficulty adapting, the majority indicated limited need for (professional) support and were at ease with support from family and friends.
  • Patients: many did not understand what psychosocial support involves. Some thought it mainly meant seeing a psychiatrist.
  • Carers: they used a more passive coping style than patients, putting themselves and their emotional needs aside.
  • Carers whose loved one was treated in a peripheral hospital indicated they had not been offered any type of psychosocial support.
  • Carers: psychosocial support was not offered to carers in most cases, but they indicated a need for it, especially after the patient's death.
• The authors' conclusion: The authors concluded that most mesothelioma patients treated in specialised hospitals do not express a need for psychosocial support and seem satisfied with support from family and friends, but that their knowledge and awareness of what this support involves should be raised. They concluded that carers express a need for support during the disease and after the patient's death, that these needs should be acknowledged, and that carers should receive help to prevent long-term distress.
• Limitations the authors state:
  • More active and talkative patients might have signed up to be interviewed, so results should be interpreted with caution.
  • Most participants were recruited from specialised centres, which may have biased the amount of unmet psychosocial need found.
  • Because of COVID-19, all interviews were held by phone or online video. This made emotions harder to read and may have led to inaccurate interpretation of participants' feelings.
  • Some psychosocial symptoms may have been amplified by COVID-19 restrictions and postponed treatments.
  • Only a minority of patients in the study were treated in peripheral hospitals.

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, Prognosis.

Related studies

• "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)
• 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)
• Living with mesothelioma: a systematic review of mental health and well-being impacts and interventions for patients and their informal carers — V. Sherborne, S. Ejegi-Memeh, et al. (2024)
• Living beyond expectations: a qualitative study into the experience of long-term survivors with pleural mesothelioma and their carers — M. Johnson, P. Allmark, et al. (2022)
• Experiences of healthcare professionals with support for mesothelioma patients and their relatives: Identified gaps and improvements for care — A.R. Frissen, S. Burgers, et al. (2021)
• Living with mesothelioma: A qualitative study of the experiences of male military veterans in the UK — S. Ejegi-Memeh, L. Darlison, et al. (2021)

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