title: The Impact of Long-Term Home Parenteral Nutrition on the Patient and the Family: Achieving Normalcy in Life.
abstract: Home parenteral nutrition (HPN) is a technologically complex, life-sustaining therapy for individuals who have intestinal failure. Accepting an invasive lifelong therapy like HPN is challenging for patients and their family caregivers. There is a desire to maintain a sense of normalcy in life and to carry on as usual. Using qualitative methodology, the authors explored and described the lived experience of HPN-dependent adults and identified normalization as a repeating and strong theme. Understanding how individuals adapt, cope, or experience this complex therapy provides insight into how they manage their lives in as normal a way as possible. By understanding the perspective of normalization, home infusion nurses and nutrition support clinicians can embrace caregiving strategies and tools consistent with the changing social environment in which the HPN experience is lived.
authors.affiliation: Brown University Medical School, Providence, Rhode Island (Dr Winkler); Rhode Island Hospital, Providence, Rhode Island (Dr Winkler); and University of Kansas School of Nursing and Department of Preventive Medicine and Public Health, Kansas City, Kansas (Dr Smith). Marion F. Winkler, PhD, RD, LDN, CNSC, is an associate professor of surgery at Brown University Medical School and a surgical nutrition specialist at Rhode Island Hospital. Her clinical areas of expertise include enteral and parenteral nutrition and short bowel syndrome. Her research focuses on quality of life and home parenteral nutrition. Carol E. Smith, PhD, RN, FAAN, is a professor at the University of Kansas School of Nursing and the Department of Preventive Medicine and Public Health. Her research program is to develop, test, and translate into practice nursing multidisciplinary interventions to support older adults and their family caregivers in managing complex home care.
authors.forename: Marion F
authors.initials: MF
authors.lastname: Winkler
authors.forename: Carol E
authors.initials: CE
authors.lastname: Smith
mesh_terms: D017028:Caregivers / Q000523:psychology*; D005260:Female; D006801:Humans; D007407:Interviews as Topic; D008297:Male; D016331:Parenteral Nutrition, Home / Q000451:nursing* / Q000523:psychology*; D010361:Patients / Q000523:psychology*; D011788:Quality of Life; D012944:Social Support; D016896:Treatment Outcome