Sam Porter1, Claire Millar, Joanne Reid. 1. School of Nursing and Midwifery, Queen's University Belfast, United Kingdom. s.porter@qub.ac.uk
Abstract
BACKGROUND: Despite its prevalence and prognostic impact, primary cachexia is not well understood. Its potential to cause considerable psychological stress indicates the need for qualitative research to help understand the perspectives of those affected. OBJECTIVE: The aims of this study were to describe the perspectives of patients with primary cachexia, of their relatives, and of the healthcare professionals involved in their care and to demonstrate how this evidence can be applied in practice at 4 different levels of application ranging from empathy to coaching. METHODS: A review of the qualitative literature and empirical qualitative investigation was used to understand the experiences of patients and relatives and the perspectives of professionals. RESULTS: The main worries expressed by patients and relatives concerned appetite loss, changing appearance, prognosis, and social interaction. We also describe their coping responses and their views of professionals' responses. The main concerns of professionals related to poor communication, lack of clinical guidance, and lack of professional education. CONCLUSIONS: Understanding patients', families', and professionals' perspectives, and mapping that understanding onto what we know about the trajectory and prognosis of the condition, provides the evidence base for good practice. Qualitative research has a central role to play in providing the knowledge base for the nursing care of patients with cachexia. IMPLICATIONS FOR PRACTICE: The evidence provided can improve nurses' insight and assist them in assessment of status, the provision of guidance, and coaching. There is a need for the development of a holistic, information-based integrated care pathway for those with cancer cachexia and their families.
BACKGROUND: Despite its prevalence and prognostic impact, primary cachexia is not well understood. Its potential to cause considerable psychological stress indicates the need for qualitative research to help understand the perspectives of those affected. OBJECTIVE: The aims of this study were to describe the perspectives of patients with primary cachexia, of their relatives, and of the healthcare professionals involved in their care and to demonstrate how this evidence can be applied in practice at 4 different levels of application ranging from empathy to coaching. METHODS: A review of the qualitative literature and empirical qualitative investigation was used to understand the experiences of patients and relatives and the perspectives of professionals. RESULTS: The main worries expressed by patients and relatives concerned appetite loss, changing appearance, prognosis, and social interaction. We also describe their coping responses and their views of professionals' responses. The main concerns of professionals related to poor communication, lack of clinical guidance, and lack of professional education. CONCLUSIONS: Understanding patients', families', and professionals' perspectives, and mapping that understanding onto what we know about the trajectory and prognosis of the condition, provides the evidence base for good practice. Qualitative research has a central role to play in providing the knowledge base for the nursing care of patients with cachexia. IMPLICATIONS FOR PRACTICE: The evidence provided can improve nurses' insight and assist them in assessment of status, the provision of guidance, and coaching. There is a need for the development of a holistic, information-based integrated care pathway for those with cancer cachexia and their families.
Authors: Nora Lize; Vera IJmker-Hemink; Rianne van Lieshout; Yvonne Wijnholds-Roeters; Manon van den Berg; Maggy Youssef-El Soud; Sandra Beijer; Natasja Raijmakers Journal: Support Care Cancer Date: 2021-04-21 Impact factor: 3.603