What are the psychological effects of mesothelioma on patients and their carers? A scoping review

Abstract

Objective: Despite recent advances in research, malignant mesothelioma remains an incurable and devastating disease, typically bringing shock and emotional distress to patients and carers. Little research has addressed the psychological impact on either group. This scoping review examines the current state of evidence on the psychological effects of mesothelioma on patients and carers, and identifies areas for further research. Methods: We searched PubMed, PsychINFO, CINAHL, the Cochrane Library and Web of Science for English-language peer-reviewed research articles published 1981 to 2019 reporting studies focussing on the psychological effects of mesothelioma on patients and carers. Following data extraction and quality appraisal, reflexive thematic analysis was used to identify themes. Results: Seventeen articles met the inclusion criteria. Carers' experiences were generally amalgamated with patients'. Three themes were developed. The Passing of Time included the importance of timing of interventions; delays in the medical journey; awareness of different time-phases in mesothelioma; and uncertainty/certainty. Dealing with Difficult Feelings reflected ubiquitous negative emotions, feelings about identity and states of being and associated coping strategies. Craving Good Communication covered issues related to sharing of information and to positive/negative aspects of communication. Conclusions: Though limited, the evidence indicates that mesothelioma, with its high symptom-burden, incurability, rarity and asbestos-related causation, leads to complex and interrelating psychological effects on patients and carers. These effects are both negative and positive. The sparse literature gives a partial picture and demonstrates an urgent need for more nuanced research. Studies exploring the experiences of specific groups are recommended, with particular attention required to carers.

Preliminary validation of a questionnaire assessing psychological distress in caregivers of patients with malignant mesothelioma: Mesothelioma Psychological Distress Tool—Caregivers

“…1 The personal experience of caregivers seems to be rarely considered compared with that of MM patients, 2 and there is a need for research exploring the experiences of this specific population. 3 Clinically, with its high symptom burden, incurability, rarity, and primarily occupational-industrial causation, MM has a unique psychosocial impact. 4 This unique combination is central to understanding the psychological distress related to MM.…”

“…Studies on the mental health of the caregivers of malignant mesothelioma (MM) patients are scarce 1 . The personal experience of caregivers seems to be rarely considered compared with that of MM patients, 2 and there is a need for research exploring the experiences of this specific population 3 . Clinically, with its high symptom burden, incurability, rarity, and primarily occupational–industrial causation, MM has a unique psychosocial impact 4 .…”

Commentary: SARS-CoV-2 and Asbestos Exposure: Can Our Experience With Mesothelioma Patients Help Us Understand the Psychological Consequences of COVID-19 and Develop Interventions?

“…As asbestos exposure is usually connected to industrial activity, MM can be characterised as an occupational disease (Noonan, 2017 ), for which responsibility and intentionality can be traced in companies, purposely exposing their workers to harmful pollutants and prioritising their profit instead of people's safety (Guglielmucci et al, 2014 ). MM patients often feel betrayed by their employers, with consequent anger and claims for compensation (Sherborne et al, 2020 ). These behaviours could be seen as an attempt to minimise feelings of guilt over one own's responsibility for negative health outcomes, to find an external scapegoat to blame and to increase the perceived control over a situation entailing feelings of danger and helplessness (Rothschild et al, 2012 ; Guglielmucci, 2016 ).…”

Living with mesothelioma: A qualitative study of the experiences of male military veterans in the UK

“…It is associated with a range of life limiting and debilitating symptoms including breathlessness, pain, cough, lethargy, weight loss and sweating. Studies have reported psychological impacts, including depression, anxiety, low mood, as common (Ball et al, 2016;Dooley et al, 2010;Moore et al, 2010;Sherborne et al, 2020). Often patients enter into complex treatment programs resulting in a range of side effects with no guarantee of benefit.…”