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Listening to parents: The role of symptom perception in pediatric palliative home care

Published online by Cambridge University Press:  22 May 2015

René Vollenbroich ,
Gian Domenico Borasio ,
Ayda Duroux ,
Monika Grasser ,
Monika Brandstätter  and
Monika Führer
René Vollenbroich*
Affiliation:
Coordination Center for Pediatric Palliative Care, Dr. von Haunersches Kinderspital, Ludwig-Maximilians-University, Munich, Germany Department of Cardiology, University Hospital Bern, Berne, Switzerland
Gian Domenico Borasio
Affiliation:
Service de Soins Palliatifs, Centre Hospitalier Universitaire Vaudois (CHUV), University of Lausanne, Lausanne, Switzerland
Ayda Duroux
Affiliation:
Coordination Center for Pediatric Palliative Care, Dr. von Haunersches Kinderspital, Ludwig-Maximilians-University, Munich, Germany
Monika Grasser
Affiliation:
Coordination Center for Pediatric Palliative Care, Dr. von Haunersches Kinderspital, Ludwig-Maximilians-University, Munich, Germany
Monika Brandstätter
Affiliation:
Interdisciplinary Center for Palliative Medicine, Ludwig-Maximilians-University Munich, Munich, Germany
Monika Führer
Affiliation:
Coordination Center for Pediatric Palliative Care, Dr. von Haunersches Kinderspital, Ludwig-Maximilians-University, Munich, Germany
*
Address correspondence and reprint requests to: René Vollenbroich, Department of Cardiology, Inselspital Bern, University of Berne, Murtenstrasse 5, 3008 Berne, Switzerland. E-mail: rene_vollenbroich@post.harvard.edu
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Abstract

Objective:

This study analyzes symptom perception by parents and healthcare professionals and the quality of symptom management in a pediatric palliative home care setting and identifies which factors contribute to a high quality of palliative and end-of-life care for children.

Methods:

In this retrospective, cross-sectional study, parents were surveyed at the earliest three months after their child's death. All children were cared for by a specialized home pediatric palliative care team that provides a 24/7 medical on-call service. Questionnaires assessed symptom prevalence and intensity during the child's last month of life as perceived by parents, symptom perception, and treatment by medical staff. The responses were correlated with essential palliative care outcome measures (e.g., satisfaction with the care provided, quality-of-life of affected children and parents, and peacefulness of the dying phase).

Results:

Thirty-eight parent dyads participated (return rate 84%; 35% oncological disorders). According to parental report, dyspnea (61%) and pain (58%) were the dominant symptoms with an overall high symptom load (83%). Pain, agitation, and seizures could be treated more successfully than other symptoms. Successful symptom perception was achieved in most cases and predicted the quality of symptom treatment (R2, 0.612). Concordant assessment of symptom severity between parents and healthcare professionals (HCPs) improved the satisfaction with the care provided (p = 0.037) as well as the parental quality-of-life (p = 0.041). Even in cases with unsuccessful symptom control, parents were very satisfied with the SHPPC team's care (median 10; numeric rating scale 0–10) and rated the child's death as highly peaceful (median 9).

Significance of the results:

The quality and the concordance of symptom perception between parents and HCPs essentially influence parental quality-of-life as well as parental satisfaction and constitute a predictive factor for the quality of symptom treatment and palliative care.

Keywords

Pediatric palliative home careSymptom perceptionEnd-of-life symptoms
Type
Original Articles
Information
Palliative & Supportive Care , Volume 14 , Issue 1 , February 2016 , pp. 13 - 19
Copyright
Copyright © Cambridge University Press 2015 

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