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

Problems experienced by patients receiving parenteral nutrition at home: results of an open interview study
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.
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.
0148-6071
215-221
Huisman de Waal, G.
33fe1bc2-a6b7-4de4-a9a9-b0fe31f58419
Schoonhoven, L.
46a2705b-c657-409b-b9da-329d5b1b02de
Naber, T.
ae0fc2ae-030f-4826-a831-e0041bb00b61
Persoon, A.
de9c93d6-00ae-46e5-8adb-275e5db7cdf5
Sauerwein, H.
28739f23-7335-4062-a918-83d443d01f05
van Achterberg, T.
1b413585-49b3-4989-a1b6-7fb4d4bac453
Huisman de Waal, G.
33fe1bc2-a6b7-4de4-a9a9-b0fe31f58419
Schoonhoven, L.
46a2705b-c657-409b-b9da-329d5b1b02de
Naber, T.
ae0fc2ae-030f-4826-a831-e0041bb00b61
Persoon, A.
de9c93d6-00ae-46e5-8adb-275e5db7cdf5
Sauerwein, H.
28739f23-7335-4062-a918-83d443d01f05
van Achterberg, T.
1b413585-49b3-4989-a1b6-7fb4d4bac453

Huisman de Waal, G., Schoonhoven, L., Naber, T., Persoon, A., Sauerwein, H. and van Achterberg, T. (2006) Problems experienced by patients receiving parenteral nutrition at home: results of an open interview study. Journal of Parenteral and Enteral Nutrition, 30 (3), 215-221. (doi:10.1177/0148607106030003215). (PMID:16639068)

Record type: Article

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.

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Published date: May 2006
Organisations: Faculty of Health Sciences

Identifiers

Local EPrints ID: 339736
URI: http://eprints.soton.ac.uk/id/eprint/339736
ISSN: 0148-6071
PURE UUID: c13daeec-b9a5-4717-87fb-3e9e731f9242
ORCID for L. Schoonhoven: ORCID iD orcid.org/0000-0002-7129-3766

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Date deposited: 30 May 2012 10:01
Last modified: 15 Mar 2024 03:41

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Contributors

Author: G. Huisman de Waal
Author: L. Schoonhoven ORCID iD
Author: T. Naber
Author: A. Persoon
Author: H. Sauerwein
Author: T. van Achterberg

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