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

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Description/Abstract

ABSTRACT. 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.