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


CONCLUSIONS
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.
Huisman-de Waal
Getty
G
Department of Nursing Science, Radboud University Nijmegen Medical Center, The Netherlands.
Naber
Ton
T
Schoonhoven
Lisette
L
Persoon
Anke
A
Sauerwein
Hans
H
van Achterberg
Theo
T
D000328:Adult; D000368:Aged; D000369:Aged, 80 and over; D000554:Ambulatory Care Facilities; D005260:Female; D006801:Humans; D007407:Interviews as Topic; D008297:Male; D008875:Middle Aged; D016331:Parenteral Nutrition, Home / Q000009:adverse effects* / Q000523:psychology*; D011788:Quality of Life; D020377:Self Efficacy; D012919:Social Behavior