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Pediatric palliative care at home by Home Care Unit: how home nurses feel?

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Abstract

Purpose

Our Home Care Unit (HCU) undertakes close to twenty pediatric palliative care engagements per year. We investigated the factors underlying such care by independent home health nurses.

Methods

This was a retrospective, observational, single-center study. Home nurses who had provided palliative pediatric care in the past 16 months were included.

Results

Fifty-six questionnaires were sent out (response rate of 44.6%). Eight home nurses had never provided pediatric palliative care. Three-quarters of the home nurses (76%) acknowledged having misgivings accepting these duties. The factors that facilitated providing this care were the availability of the HCU doctor and nurses, the proactiveness of the HCU team, and house calls. In 76% of cases, the involvement of the home nurses exceeded the strictly professional setting. Forty-six percent of the home nurses were amenable to undertaking another pediatric palliative care engagement, although 48% deemed the remuneration to be somewhat lacking.

Conclusion

The analysis allowed us to identify several prerequisites for these care engagements: the availability and the proactiveness of the HCU team, communication, and planning. This study showed the pronounced personal involvement of home nurses in complex situations, with both the child and their entire family. Home nurses appear to be skilled at using the resources available to manage the exhaustion that can arise with such an engagement. Facilitating and respecting the choice to stay home of the child and their family was meaningful to them. The personal and professional enrichment were a source of motivation despite certain limitations (availability, remuneration).

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Data availability

Data were collected by a self-administered questionnaire.

Code availability

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Funding

This research was supported by the institution employing the authors, as part of their usual duties.

Author information

Author notes

  1. Amandine Bertrand and Véronique Veyet contributed equally to this work.

Authors and Affiliations

  1. Institut d’Hématologie Et d’Oncologie Pédiatrique, Home Care Unit, 1 place du Pr J. Renaut, 69373, Cedex 08, Lyon, France

    Amandine Bertrand, Véronique Veyet, Florence Goy, Marie Cervos & Matthias Schell

  2. ESPPéRA, Lyon, France

    Matthias Schell

Authors
  1. Amandine Bertrand
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  2. Véronique Veyet
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  3. Florence Goy
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  4. Marie Cervos
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  5. Matthias Schell
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Contributions

A. Bertrand, M. Schell, and V. Veyet conceived the study. V. Veyet and M. Cervos contacted the nurses. A. Bertrand analyzed the data. V. Veyet took the lead in writing the manuscript. All authors provided critical feedback and helped shape the research, analysis, and manuscript.

Corresponding author

Correspondence to Amandine Bertrand.

Ethics declarations

Ethics approval

Our study was registered with the National Commission for Information and Civil Liberties (CNIL). This study was approved by the Ile de France 7 Institutional Review Board.

The data were anonymized, and publication of the results should not result in the subjects being identifiable.

Consent to participate

Answer to self-administered questionnaire was considered consent to participate.

Consent for publication

An inform letter was sent to participants at the same time as the questionnaire, explaining the modalities of publication. Answer to self-administered questionnaire was considered consent to participate.

Conflict of interest

The authors declare no competing interests.

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Florence Goy, Marie Cervos, and Matthias Schell equally supervised the work.

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Bertrand, A., Veyet, V., Goy, F. et al. Pediatric palliative care at home by Home Care Unit: how home nurses feel?. Support Care Cancer 30, 2091–2099 (2022). https://doi.org/10.1007/s00520-021-06623-w

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  • DOI: https://doi.org/10.1007/s00520-021-06623-w

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