The experience of cancer cachexia: a qualitative study of advanced cancer patients and their family members

Abstract

Background: Cachexia in advanced malignancy is a debilitating syndrome which contributes to approximately two million deaths worldwide annually. In spite of advances in understanding the biomedical aspects of cancer cachexia, little attention has been paid to exploring its holistic impact on patients and those who care for them.

Objective: The aim of this paper is to describe the lived experience of cachexia from the perspective of patients with cancer and their family members.

Design: An interpretative phenomenological approach was employed.

Setting and participants: A purposive sampling strategy recruited 15 patients and 12 family members from the Regional Cancer Centre in Northern Ireland.

Method: Each participant was interviewed during 2004/2005 using an unstructured interview. All interviews were recorded and transcribed verbatim. Analysis combined a two stage approach using thematic and interpretative phenomenological analysis.

Results: Analysis generated six superordinate themes that reflected the complex dynamics of the cachexia experience. Themes were: physiological changes in appetite; visuality of cachexia; weight loss interpreted as a bad sign; response from health care professionals; conflict over food; and coping responses.

Conclusions: Findings confirmed that cancer cachexia has far reaching implications for patients and their families, extending beyond physical problems into psychological, social and emotional issues. This insight is a critical first step in the development of more responsive care for these clients.