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Problems Experienced by Patients Receiving Parenteral Nutrition at Home: Results of an Open Interview Study

Getty Huisman-de Waal, MSc, RN^*,, Ton Naber, MD, PhD, Lisette Schoonhoven, PhD, RN^*, Anke Persoon, MSc, RN, Hans Sauerwein, MD, PhD^|| and Theo van Achterberg, PhD, RN^*

From the ^* Department of Nursing Science, Radboud University Nijmegen Medical Center, The Netherlands; Department of Gastroenterology, Radboud University Nijmegen Medical Center, The Netherlands; Department of Internal Medicine, Hospital Hilversum, The Netherlands; Department of Geriatrics, Radboud University Nijmegen Medical Center, The Netherlands; and the ^|| Department of Endocrinology and Metabolism, Academic Medical Center Amsterdam, The Netherlands

Correspondence: L. Schoonhoven, University Medical Center Nijmegen, 117-Nursing Science, PO Box 9101, 6500 HB Nijmegen, The Netherlands. Electronic mail may be sent to L.Schoonhoven{at}kwazo.umcn.nl.

Background: Home parenteral nutrition (HPN) is offered to patients who are unable to absorb sufficient nourishment from normal oral food intake or tube feeding. Major causes include severe motility disorders and limited resorption surface in the small intestine. HPN is a lifesaving therapy but has severe consequences on daily life. The aim of this study was to make an inventory of the problems experienced by patients receiving HPN. Methods: Open interviews were held with 48 patients from the 2 major centers for HPN in the Netherlands, centered around the question: Which 3 HPN problems have the most severe impact on your daily life? Data were analyzed using content analysis. Results: The respondents mentioned 7 central problems: negative emotions, physical problems, social limitations, dependence on others, incapability, complications, and patient-care provider problems. In addition, practical problems were mentioned: sleeping problems, financial problems, and the "hospital atmosphere" at home. The latter issues formed less of a problem for the patients. Conclusion: The main underlying elements in the lives of many HPN patients appeared to be loss, longing, and grief. In contrast, a smaller proportion of the patients expressed that they had clearly adapted to life with HPN. By means of the HPN, they were still alive and enjoying all the things they could still do.

Journal of Parenteral and Enteral Nutrition, Vol. 30, No. 3, 215-221 (2006)
DOI: 10.1177/0148607106030003215


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