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Important issues in proposing autonomy training in home parenteral nutrition for short bowel syndrome patients: a qualitative insight from the patients’ perspectives

European Journal of Clinical Nutrition (2024)Cite this article

Subjects

Abstract

Objectives

The standard treatment for short bowel syndrome is home parenteral nutrition. Patients’ strict adherence to protocols is essential to decrease the risk of complications such as infection or catheter thrombosis. Patient training can even result in complete autonomy in daily care. However, some patients cannot or do not want too much responsibility. However, doctors often encourage them to acquire these skills. Based on qualitative investigations with patients, we wanted to document issues of importance concerning perceptions of autonomy in daily care.

Methods

Semistructured interviews were conducted with 13 adult patients treated by home parenteral nutrition using a maximum variation sampling strategy. We proceeded to a thematic analysis following an inductive approach.

Results

After achieving clinical management of symptoms, a good quality of life is within the realm of possibility for short bowel syndrome patients with home parenteral nutrition. In this context, achieving autonomy in home parenteral nutrition could be a lever to sustain patients’ quality of life by providing better life control. However, counterintuitively, not all patients aim at reducing constraints by reaching autonomy in home parenteral nutrition. First, they appreciate the social contact with the nurses, which is particularly true among patients who live alone. Second, they can feel safer with the nurse’s visits. Regaining freedom was the main motivation for patients in the training program and the main benefit for those who were already autonomous.

Conclusions

Medical teams should consider patients’ health locus of control (internal or external) for disease management to support them concerning the choice of autonomy in daily care for parenteral nutrition.

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Data availability

The data that support the findings are available on request from the authors.

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Acknowledgements

We thank Justine Krier and Martin Clement Sonia –RN- for their help in the recruitment process. We acknowledge the work of Emilie Culminique and Sandrine GrandClere for contributing to transcription and the contribution of Yacine Haroun in encoding the data. We also thank Marjorie Starck for her help in administrative management of the project.

Funding

LR received a Baxter award delivered under the auspices of la Société Francophone de Nutrition Clinique et Métabolisme (2018).

Author information

Authors and Affiliations

  1. CHRU-Nancy, INSERM, Université de Lorraine, CIC, Epidémiologie Clinique, F-54000, Nancy, France

    Laetitia Ricci, Alfa Coly & Francis Guillemin

  2. Université de Lorraine, Inserm, INSPIIRE, F-54000, Nancy, France

    Laetitia Ricci & Francis Guillemin

  3. Department of Gastroenterology and Nutritional Support, Center for Intestinal Failure, Reference Centre of Rare Disease MarDI, AP-HP Beaujon Hospital, University of Paris Inserm UMR, 1149, Paris, France

    Francisca Joly

  4. Department of Diabetology-Endocrinology-Nutrition, Brabois Hospital, Nancy University Hospital, 54511, Vandoeuvre-lès-Nancy, France

    Didier Quilliot

Authors
  1. Laetitia Ricci
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  4. Francis Guillemin
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Contributions

LR, FJ and FG contributed to the conception and design of the research. LR, AC and DQ contributed to the acquisition of data. LR, FJ and DQ helped interpret the data. LR wrote the original draft. All authors critically revised the manuscript.

Corresponding author

Correspondence to Laetitia Ricci.

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Ethical approval

The Comité de Protection des Personnes (CPP (Sud-Ouest et Outre-Mer III)) approved the protocol (no. ID‐RCB: 2019‐A0203453‐46). All participants gave their oral consent and received an information and opposition form.

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The authors declare no competing interests.

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Ricci, L., Joly, F., Coly, A. et al. Important issues in proposing autonomy training in home parenteral nutrition for short bowel syndrome patients: a qualitative insight from the patients’ perspectives. Eur J Clin Nutr (2024). https://doi.org/10.1038/s41430-024-01415-x

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