An exploration of the quality of life and the meaning of food in adults living with home total parenteral nutrition

Home total parenteral nutrition (TPN) provides life sustaining intravenous nutrition therapy for individuals who have impaired gastrointestinal function because of intestinal failure. The purpose of this study was to define quality of life (QOL), describe how home TPN influences QOL, and explore the meaning of food and eating from the perspective of home TPN dependent adults. This qualitative study, using content and interpretative phenomenological analysis, included data from semi-structured telephone interviews with 24 self-selected adults receiving home TPN because of short bowel syndrome or pseudo-obstruction. Participants were stratified by length of time on home TPN into four subgroups: less than 2 years, 2 to 5 years, 5 to 10 years, and greater than 10 years. Models of health-related QOL, technology dependency and QOL, and factors influencing experiences of food and food intake in heart failure served as conceptual frameworks for this study. Analysis was also conducted using a chronic illness framework.; The overarching theme that emerged from the data was the meaning of home TPN as a lifeline and nutritional safety net. There were five subthemes: definition of QOL, benefits of home TPN outweighs burdens of technology, the meaning of food, achieving normalcy in life, and discrepancies between expectations and reality. Quality of life was defined by participants as how much one enjoys life; being happy, satisfied or content with life; and being able to do what you want to do when you want to do it. Underlying disease state, magnitude of diarrhea or ostomy output, and length of time on home TPN influenced how QOL was perceived. Lifestyle adaptation was influenced by how structured or flexible an individual was with the TPN infusion schedule. Eating for survival, health benefits, and socialization emerged as three dimensions illustrating how food and eating influenced QOL. Participants expressed a strong desire to achieve normalcy in life. The challenge for health care professionals is to balance provision of the information necessary to facilitate a person's adaptation to technology and home TPN dependency while promoting hope and optimism for the future.