Coping with Diffuse Intrinsic Pontine Glioma in Children – Findings from an Interview Study on Bereaved Parents

Abstract

Background Diffuse midline glioma (DMG) is the most common malignant glioma in early childhood with median survival of only eleven months. This retrospective interview study investigates specific coping strategies and needs of affected parents.

Patients 13 interviews with parents of seven children who died from DMG at the age of five to 16 years were conducted in 2016.

Method The used method is a problem-oriented guided interview with consecutive content and evaluating structuring analysis according to Mayring.

Results Major inductive category was whether the parents had talked to their children about their upcoming death. All parents stated overall satisfaction and comfort regarding their palliative care. Lack of psycho-social support in families was successfully addressed by involving palliative care.

Conclusions Retrospective interview studies in this context are feasible. Early involvement of the palliative care team may relieve burden from affected parents. Open communication about death proved helpful for all involved parties, it may facilitate acceptance of terminal illness and alleviate guilt in parents.Concepts for an open and empowering communication within families and between treatment site and families need continuing adjustment. The Palliative care team may also have a key role regarding early phase trials and molecular studies.

Zusammenfassung

Hintergrund Das Diffuse Mittelliniengliom (DMG) ist das häufigste maligne Gliom des Kindesalters mit einer mittleren Überlebensrate von nur elf Monaten. Diese retrospektive Interview-Studie ermittelt spezifische psychische Bewältigungsstrategien und Bedürfnisse der betroffenen Eltern.

Patienten Im Jahr 2016 wurden 13 Interviews mit Eltern von sieben im Alter von fünf bis 16 Jahren an DMG verstorbenen Kindern geführt.

Methode Es wurde ein problemzentriertes Leitfadeninterview und anschließend eine inhaltlich und evaluierend strukturierende qualitative Inhaltsanalyse nach Mayring durchgeführt.

Ergebnisse Die wichtigste induktive Kategorie war die Kommunikation zwischen Eltern und Kind über dessen bevorstehendes Versterben. Darüberhinaus bestätigten die Eltern insgesamt Zufriedenheit bezüglich des Palliativdiensts. Fehlende psychosoziale Unterstützung wurde durch ein Hinzuziehen des Palliativdiensts erfolgreich kompensiert.

Schlussfolgerung Retrospektive Elterninterviews in diesem Kontext sind durchführbar. Der frühzeitige Einsatz des Palliativteams entlastet die Eltern. Die Konzepte für eine offene Kommunikation in den betroffenen Familien und zwischen Behandlungszentrum und Familien benötigen eine fortwährende Anpassung und Weiterentwicklung. Der Palliativdienst nimmt auch eine Schlüsselposition in der Kommunikation mit Frühphasenstudien und molekularen Begleitstudien ein.

Key words

Diffuse intrinsic pontine glioma - Palliative care - End-of-life care - Bereavement - Communication

Schlüsselwörter

Diffus intrinsisches Ponsgliom - Palliative Care - End-of-life Care - Trauerbewältigung - Kommunikation

Publication History

Article published online:
02 June 2022

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