Patients with mesothelioma and their carer's experience of diet and appetite: A qualitative insight from the Help-Meso Study

Abstract

Background

People living with mesothelioma have a high symptom burden that can affect dietary intake and the development of malnutrition, subsequently impacting on patient-related and treatment outcomes. The present study aimed to develop a better understanding of the experiences of diet and appetite in people living with mesothelioma and their informal carers.

Methods

Twenty-three participants took part in semistructured interviews including 12 people living with mesothelioma (10 pleural and 2 peritoneal) aged 56–83 years and 12 informal carers, predominantly their spouses. Open ended questions focussed on experiences of appetite and diet, as well as approaches to maintain adequate food intake. Thematic analysis was applied.

Results

Four themes were generated that included unintentional weight loss and poor appetite during diagnosis and when undergoing medical intervention. Participants managed their appetite and diet by taking each day at a time and this was influenced by the physical and emotional experiences of mesothelioma. The informal carer took on the lead role of managing their relatives' diet and implemented their own nutritional strategies and there were challenges with dietary advice.

Conclusions

Appetite was viewed as a multidimensional experience and was grounded within the biopsychosocial model. The findings offer important insights into opportunities informing the development of effective interventions that provide meaningful benefits for individuals living with mesothelioma and their family.