Qualitative description of the adult patient experience of cancer-related cachexia (CRC) : a pilot study : a thesis presented in partial fulfilment of the requirements for the degree of Master of Philosophy in Nursing, Massey University, Palmerston North, New Zealand

Abstract

This thesis explores the experience of living with cancer-related cachexia (CRC) from the patient perspective. Critique of the literature indicates few examples where patients have had the opportunity to speak. Following a challenging recruitment process, six people living with the syndrome were interviewed to elicit their narrative. Their stories were examined and themes identified relating to their personal feelings and how these affected social interactions. Thematic analysis was applied to produce what is a rich qualitative description of the experience from this small sample. Living with CRC requires development of strategies to survive. Emergent themes included the loss of sense of self and a changing relationship to the social world, social isolation and dissatisfaction with truth-telling by health professionals. Recommendations are made to mitigate the suffering of patients by empowering them through better information and acknowledgement of their condition. The balance between nutrition and wellbeing is re-examined, calling for a reorientation of perspective from a focus on intake towards a focus on quality of life. This clearly falls within the nurse-as patient-advocate paradigm and the relevance and meaning of this research to the nursing profession is explored. Potential areas for further research in regards to both patient experience and nursing practice are extrapolated.