The psychological impact of living with peritoneal mesothelioma: An Interpretative Phenomenological Analysis

Our plain-English summary of The psychological impact of living with peritoneal mesothelioma: An Interpretative Phenomenological Analysis, by B. Lond, L. Apps, K. Quincey, et al (Journal of Health Psychology, 2025).

The study

• Authors: B. Lond, L. Apps, K. Quincey, I. Williamson
• Journal: Journal of Health Psychology
• Published: 2025;30(10):2781-2797
• Read it: PubMed · Publisher · Free full text

Abstract

Peritoneal mesothelioma is a rare life-limiting cancer that is likely to have an extremely negative impact on mental health; however, no studies to date have explored the impact and needs of those living with the condition. Ten individuals diagnosed with peritoneal mesothelioma (eight women, two men) participated in interviews and could share and discuss photographs to convey their illness experiences. Data analysis was informed by Interpretative Phenomenological Analysis. Two themes are presented: 'Experiences of Care' and 'Psychological Distress'. Individuals experienced a lengthy diagnostic journey with little follow-up support. Women also reported negative impacts on body image due to abdominal swelling and scaring, diminished sexual ability and loss of fertility. Individuals recalled vivid feelings of anxiety and post-traumatic stress, and tried to cope by compartmentalising their fears and modifying diets. These findings demonstrate the need to further signpost services, help individuals manage gendered issues, and alleviate feelings of anxiety.

In plain English

This was a qualitative interview study, using a method called Interpretative Phenomenological Analysis, of 10 people in the UK diagnosed with peritoneal mesothelioma, which affects the abdomen. There were eight women and two men, aged 26 to 59. They were recruited through UK charities, support groups and specialist nurses and interviewed online in 2021 and 2022, and most also shared photographs. The study did not examine asbestos exposure. Participants described a long diagnostic journey with multiple tests and misdiagnoses. Some described isolation, partly because awareness and support centred on pleural mesothelioma. Some women, but not the men, raised concerns about body image, ageing, sexual function and loss of fertility, often linked to menopause caused by treatment. Every participant described a negative impact on mental health, including anxiety; anxiety about scans and post-traumatic stress were also common. Those who were cancer-free still feared the cancer returning. Some feared malnutrition and changed their diets, while some warned of diet misinformation. The authors concluded that supportive care for peritoneal patients needs to increase. They noted that their sample was all White and married, and mostly female.

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 online interviews, with optional participant photographs, analysed by Interpretative Phenomenological Analysis (IPA)
• Who was studied: 10 people diagnosed with peritoneal mesothelioma (eight women, two men), aged 26 to 59, all White-British, heterosexual and married. They were recruited in the UK through mesothelioma and asbestos charities, research centres, support groups and Mesothelioma UK nurse specialists, and were interviewed online in 2021 and 2022. Seven were post-treatment, two were in treatment and one was awaiting surgery.
• Exposure: Not studied. The study concerned the experience of living with diagnosed peritoneal mesothelioma, not asbestos exposure.
• Main results:
  • Participants described a long diagnostic process with multiple tests and misdiagnoses, which increased their anxiety and frustration.
  • Some participants felt isolated because of a lack of support and a lack of awareness among the public and health services, especially compared with pleural mesothelioma.
  • Concerns about negative body image and perceived ageing were reported only by female participants. Most of these issues arose from treatment, often from induced menopause.
  • Loss of the ability to have children was an additional worry for a number of the female participants.
  • Every participant described a profoundly negative impact on their mental health.
  • After diagnosis, feelings of acute anxiety, anxiety about scans and post-traumatic stress were common among participants. The article describes these as common, not as reported by every participant.
  • For some participants, anxiety showed itself as intrusive thoughts and disturbed dreams that impaired sleep.
  • Participants who were cancer-free after treatment still reported anxiety about the cancer returning. Some tried to cope by pushing these fears aside or keeping busy.
  • Some participants feared that future tumours could affect their ability to digest food, leading to malnutrition. Some changed their diets, partly to reduce abdominal discomfort after surgery and partly as a way of coping.
  • Some participants warned that diet-based misinformation was common among patients.
• The authors' conclusion: The authors concluded that supportive care for peritoneal mesothelioma patients needs to increase. They said services are warranted to help with the effects of medically induced menopause, with distress, and with diet changes.
• Limitations the authors state:
  • All participants were White, heterosexual and married, mostly women, and had received or were due to receive cytoreductive surgery and intraperitoneal chemotherapy. Other groups' views were not heard.
  • The range of participant ages and times since diagnosis limited how similar the sample was.
  • The interviewer was a younger man and an outsider to the illness. Participants may therefore have been less willing to discuss some topics, although the authors judged this was not typically the case.
  • The study cannot show how common these issues are among patients generally; the authors said further research is needed for that.

Topics

The National Library of Medicine indexes this study under subjects our site covers: Mesothelioma, Peritoneal mesothelioma.

Medical terms in this study, explained in our Lexicon: Peritoneal Mesothelioma.

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