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

Détails

ID Serval
serval:BIB_47D94E84A16D
Type
Article: article d'un périodique ou d'un magazine.
Collection
Publications
Titre
Listening to parents: The role of symptom perception in pediatric palliative home care.
Périodique
Palliative and Supportive Care
Auteur(s)
Vollenbroich R., Borasio G.D., Duroux A., Grasser M., Brandstätter M., Führer M.
ISSN
1478-9523 (Electronic)
ISSN-L
1478-9515
Statut éditorial
Publié
Date de publication
2016
Peer-reviewed
Oui
Volume
14
Numéro
1
Pages
13-19
Langue
anglais
Notes
Publication types: Journal Article
Publication Status: ppublish
Résumé
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 (R 2, 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.
Mots-clé
Adult, Cross-Sectional Studies, Death, Dyspnea/diagnosis, Dyspnea/psychology, Female, Home Care Services/standards, Humans, Male, Pain/diagnosis, Pain/psychology, Palliative Care/methods, Palliative Care/psychology, Parents/psychology, Pediatrics/methods, Perception, Quality of Life/psychology, Retrospective Studies, Surveys and Questionnaires, Symptom Assessment/psychology
Pubmed
Web of science
Création de la notice
22/03/2016 16:44
Dernière modification de la notice
03/03/2018 16:50
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