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

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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.

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Acknowledgements

We are grateful to the patients and carers for their willingness to share their experiences; and acknowledge the significant assistance of Ms. Yolande Cox, Ms. Jocelyn McLean, Ms. Beth Ivimey and Prof Nico van Zandwijk, who facilitated participant recruitment.

Funding

This project was funded by the University of Newcastle Priority Research Centre for Health Behaviour. Dr. Smith and Prof Girgis are supported by the Cancer Institute NSW grants. CONCERT is funded by the Cancer Institute NSW with contributions from the University of New South Wales, Western Sydney University, University of Wollongong, Illawarra and Shoalhaven Local Health Districts and the Ingham Institute for Applied Medical Research. Dr. Waller is supported by the Australian Research Council DECRA. During data collection, Dr. Lambert was supported by the Australian National Health and Medical Research Council early career fellowship and at the time of publication, by the CIHR Canada Research Chair.

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Authors and Affiliations

  1. Centre for Oncology Education and Research Translation (CONCERT), Ingham Institute for Applied Medical Research, South Western Sydney Clinical School, University of New South Wales, Sydney, NSW, 1871, Australia

    Shenouda Girgis, Allan ‘Ben’ Smith, Sylvie Lambert & Afaf Girgis

  2. St. Mary’s Research Centre, McGill University, Montreal, Canada

    Sylvie Lambert

  3. Health Behaviour Research Collaborative, School of Medicine and Public Health, Priority Research Centre for Health Behaviour (PRCHB), University of Newcastle, Newcastle, Australia

    Amy Waller

  4. Hunter Medical Research Institute, Newcastle, Australia

    Amy Waller

Authors
  1. Shenouda Girgis
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  2. Allan ‘Ben’ Smith
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  3. Sylvie Lambert
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  4. Amy Waller
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  5. Afaf Girgis
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Corresponding author

Correspondence to Allan ‘Ben’ Smith.

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Conflict of interest

The authors declare that they have no conflict of interest.

Ethical approval

All procedures performed in studies involving human participants were in accordance with the ethical standards of the institutional and/or national research committee and with the 1964 Helsinki declaration and its later amendments or comparable ethical standards.

Informed consent

Informed consent was obtained from all individual participants included in the study.

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Girgis, S., Smith, A.‘., Lambert, S. et al. “It sort of hit me like a baseball bat between the eyes”: a qualitative study of the psychosocial experiences of mesothelioma patients and carers. Support Care Cancer 27, 631–638 (2019). https://doi.org/10.1007/s00520-018-4357-0

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  • DOI: https://doi.org/10.1007/s00520-018-4357-0

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