Patient and informal carers experience of living with mesothelioma: A systematic rapid review and synthesis of the literature


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Stephanie Ejegi-Memeh1, Virginia Sherborne1, Madeleine Harrison1, Bethany Taylor1, Michaela Senek1, Angela Tod1, Clare Gardiner1
1University of Sheffield

Abstract

Background

In order to effectively provide support and care for individuals and families living with mesothelioma, we need to understand their experiences and priorities. This evidence review draws together existing research on the experience of living with mesothelioma. The purpose of this review was to identify what is known about the experience of people living with mesothelioma, from the perspective of patients and their carers.

Method

The review protocol is registered on PROSPERO (CRD42020204726).

Systematic searches were conducted across Medline, PsycInfo, Scopus and the Cumulative Index to Nursing and Allied Health Literature. Google Scholar was also searched. The inclusion criteria stipulated that studies were peer‐reviewed, reported on the experience of living with mesothelioma from the perspective of patients and informal carers, were written in English, and were published between December 2008 and October 2020. The quality of the included studies was assessed using the Mixed-Methods Appraisal Tool. Data were extracted and a narrative synthesis was developed.

Results

Twenty-five studies were identified that met the inclusion criteria. Twelve of the studies utilized qualitative methods, 12 utilized quantitative methods and one used mixed-methods. Findings were divided into eight areas: experience of diagnosis; physical impact of mesothelioma; psychological impact of mesothelioma; impact on informal carers, carers and relationships; self-management; health care professionals and systems; treatment and trials; and asbestos exposure and compensation.


Conclusion

Over the past 12 years the volume of mesothelioma patient and carer experience research has grown. This has contributed to our understanding of the complex needs and experiences of mesothelioma patients and their carers. However, this review has identified several gaps in current evidence. 

Impact statement

The findings from the review have informed a mesothelioma patient and carer research prioritisation exercise that is being conducted by the Mesothelioma UK Research Centre.