“I am the Outlier on the Graph”: An Exploration of the Experiences and Coping Strategies of People Under 60 Living with Pleural or Peritoneal Mesothelioma Using Interview and Photo-elicitation Methods

Mesothelioma is a terminal cancer that typically affects the lungs; however, it can affect the abdomen, as well as the heart and testes in even more rare cases. It is primarily caused by exposure to asbestos; and as a result, is generally more common in older male individuals -over the age of 70- who may have been exposed to asbestos at a time of widespread and underregulated industrial use of the material. That said mesothelioma can present in younger individuals including in middle-aged and young adults; however, this is often underacknowledged, and research into the particular psychological experiences of this younger demographic remains limited. This project initially aimed to explore the experiences and coping strategies of people aged under 60 who had been diagnosed with mesothelioma, though this was eventually expanded to further explore the unique experiences of people with peritoneal mesothelioma – who similarly remain understudied. An initial review of the qualitative research studying people’s experiences of living with mesothelioma was conducted using a meta-ethnographic approach in order to determine what was currently known. Thirteen databases were systematically searched, and twenty-two texts were found and synthesised: together, these elucidated individuals’ experiences of complex trauma, individual coping, and support. The next phase of the project used semi-structured interview and photo-elicitation methods to collect the verbal and visual experiences of young people and/or people living with peritoneal mesothelioma, whom had been recruited to this project through several mesothelioma charities and research groups. Eighteen people: 6 men and 12 women, aged 26-59-years (mean age 45), participated in the research; of who: 8 had been diagnosed with pleural- and 10 had been diagnosed with peritoneal mesothelioma. One-to-one, online interviews lasted on average 1-hour 49-minutes, and a total 134 photographs were provided by the participants. The data were analysed using Interpretative Phenomenological Analysis. Regarding the experiences of people under 60, two themes with discrete subthemes were identified: (1) ‘Dying Young of an Older Person’s Disease’; and (2) ‘Living Young with an Older Person’s Disease’. Two themes with discreet subthemes were also found for people living with peritoneal mesothelioma: (1) ‘Experiences of Care’; and (2) ‘Psychological Distress’. An updated review of the qualitative research was carried out to ascertain the originality of these findings and their contributions to a contemporary research space that is increasingly recognising the diversity and multiplicity of the disease experience. Moreover, the current findings address the unique challenges and coping processes of younger people and individuals living with peritoneal mesothelioma; and evidence the need for more tailored support to help patient groups manage the distinctive psychosocial, gendered, and dietary concerns they face. Findings further evidence a need for a more nuanced discussion and representation of mesothelioma, as something more than an older person’s disease, to raise awareness of other affected patient groups who otherwise feel they are alone and unsupported. This project has been presented at national and international conferences and published within health psychology and in cancer care journals thus far, together with recommendations for future research.

Name dc:type.qualificationname

PhD

Level dc:type.qualificationlevel

Doctoral

Grantor dc:publisher.institution

De Montfort University

Year dc:date.issued

2025

Author dc:creator

• Lond, Benjamin

Licence

• https://dora.dmu.ac.uk/bitstreams/f6398e89-40bf-4ba9-a4b7-8ba99b20edfc/download