Problems experienced by patients receiving parenteral nutrition at home: results of an open interview study

ABSTRACT. Background: Home parenteral nutrition (HPN)is offered to patients who are unable to absorb sufficientnourishment from normal oral food intake or tube feeding.Major causes include severe motility disorders and limitedresorption surface in the small intestine. HPN is a lifesavingtherapy but has severe consequences on daily life. The aim ofthis study was to make an inventory of the problems experiencedby patients receiving HPN. Methods: Open interviewswere held with 48 patients from the 2 major centers for HPNin the Netherlands, centered around the question: Which 3HPN problems have the most severe impact on your dailylife? Data were analyzed using content analysis. Results: Therespondents mentioned 7 central problems: negative emotions,physical problems, social limitations, dependence onothers, incapability, complications, and patient-care providerproblems. In addition, practical problems were mentioned:sleeping problems, financial problems, and the “hospitalatmosphere” at home. The latter issues formed less of aproblem for the patients. Conclusion: The main underlyingelements in the lives of many HPN patients appeared to beloss, longing, and grief. In contrast, a smaller proportion ofthe patients expressed that they had clearly adapted to lifewith HPN. By means of the HPN, they were still alive andenjoying all the things they could still do.