"It sort of hit me like a baseball bat between the eyes": a qualitative study of the psychosocial experiences of mesothelioma patients and carers

Our plain-English summary of "It sort of hit me like a baseball bat between the eyes": a qualitative study of the psychosocial experiences of mesothelioma patients and carers, by S. Girgis, A. Smith, S. Lambert, et al (Supportive Care in Cancer, 2019).

The study

• Authors: S. Girgis, A. Smith, S. Lambert, A. Waller, A. Girgis
• Journal: Supportive Care in Cancer
• Published: 2019;27(2):631-638
• Cited by: 27 articles, as counted by NIH iCite
• Read it: PubMed · Publisher

Abstract

Purpose: Mesothelioma is an insidious disease with a generally poor prognosis even after invasive treatment. This qualitative study aimed to explore the experiences of patients suffering from mesothelioma and their carers and their perceptions of how their needs may be addressed.

Methods: Eligible patients and carers were identified by a lung cancer care coordinator at each participating site, and invited to participate in one-on-one semi-structured telephone interviews (n = 5 patients, n = 3 carers), or in one of two focus groups (n = 3 patients, n = 3 carers). Discussions focusing on participants' experiences relating to physical, psychological, social, information and carer domains were audio-recorded, transcribed verbatim and thematically analysed.

Results: The five major themes identified were (1) time of diagnosis is a particularly difficult period; (2) the timeliness, accuracy and balance of mesothelioma information is problematic; (3) coping strategies ranged from antagonism to acceptance; (4) the emotional and physical load of caring for the patient is significant and (5) carers need one-on-one support.

Conclusion: Mesothelioma patients and their carers face significant challenges, particularly around the time of diagnosis and in the physical, psychological and social/practical domains. There is a clear need for additional information, delivered in a timely and psychologically sensitive manner, as well as for practical and emotional support. Quantitative research may shed greater light on the prevalence and severity of challenges and needs reported by participants, and determine the usefulness of resources such as case workers and dyadic coping interventions in addressing these.

In plain English

This qualitative study from Australia explored the experiences and needs of people with mesothelioma and of the people caring for them. Eight patients (six men, two women) and six carers (all women), including four patient-carer pairs, were recruited through three hospitals in Sydney, New South Wales, in 2010. They took part in semi-structured telephone interviews or in one of two focus groups. The discussions were analysed for recurring themes. The authors identified five themes. The time of diagnosis was especially hard, and anger and stress were common. Information was often poorly timed and was seen as largely negative. Ways of coping ranged from a fighting attitude to acceptance. Caring brought a heavy emotional and physical load. Carers valued one-on-one support, including from nurse case workers employed by the Asbestos Diseases Research Institute and from other carers. The authors concluded that a mesothelioma diagnosis has significant consequences for both patients and carers. They noted that some groups of patients were not well represented and that the researchers' own interpretation shaped the themes. The study did not examine asbestos exposure.

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 one-on-one telephone interviews and focus groups, analysed by thematic analysis
• Who was studied: 8 patients with mesothelioma (six male, two female) and 6 carers (all female), of whom four were patient-carer pairs. They were recruited from three tertiary hospitals in Sydney, New South Wales, Australia, during 2010. Telephone interviews involved 5 patients and 3 carers. Two focus groups involved 3 patients and 3 carers. Recently bereaved carers were also eligible.
• Exposure: Not an asbestos exposure study. The subject was the experience of living with, or caring for someone with, a mesothelioma diagnosis. Asbestos exposure was not assessed.
• Main results:
  • For the patients, the mean age was 64 years (SD = 8.3). For the carers, the mean age was 64.2 years (SD = 8.6). Time since the patient's diagnosis ranged from 11 weeks to 3.5 years (mean 1.5 years, SD = 1.4).
  • Theme 1: the time of diagnosis was a particularly difficult period. Patients and carers reported shock, and anger and stress were common.
  • Theme 2: patients and carers saw receiving large amounts of information while dealing with the shock of diagnosis as inappropriate.
  • Theme 2 (continued): participants were uneasy about the content of mesothelioma information, which they perceived as predominantly negative.
  • Theme 3: some participants coped by treating the cancer as a battle to be fought.
  • Theme 3 (continued): other participants coped by accepting their situation.
  • Theme 4: carers described emotional strain and physical and practical demands of caring that could consume their resources.
  • Theme 5: carers valued one-on-one support. This came mainly from case workers and from other mesothelioma carers.
  • The case workers were registered nurses employed by the Asbestos Diseases Research Institute (ADRI).
• The authors' conclusion: The authors concluded that a mesothelioma diagnosis has significant consequences for both patients and carers.
• Limitations the authors state:
  • All participants came from three hospitals. The authors stated that people from other states, or with advanced disease receiving palliative treatment outside hospitals, were not well represented and would ideally have been included through purposive sampling.
  • The researchers played an active role in generating the themes, which introduces some subjectivity into the analysis.

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, Lung Cancer.

Related studies

• 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)
• 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)
• Dying of mesothelioma: A qualitative exploration of caregiver experiences — J.T. Lee, D.L. Mittal, et al. (2022)
• What are the psychological effects of mesothelioma on patients and their carers? A scoping review — V. Sherborne, J. Seymour, et al. (2020)
• Living with mesothelioma: A qualitative study of the experiences of male military veterans in the UK — S. Ejegi-Memeh, L. Darlison, et al. (2021)
• Communication of a mesothelioma diagnosis: developing recommendations to improve the patient experience — B.H. Taylor, C. Warnock, et al. (2019)

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