Beschreibung:
<jats:title>Abstract</jats:title><jats:p>
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.</jats:p><jats:p>
Patients 13 interviews with parents of seven children who died from DMG at
the age of five to 16 years were conducted in 2016.</jats:p><jats:p>
Method The used method is a problem-oriented guided interview with
consecutive content and evaluating structuring analysis according to
Mayring.</jats:p><jats:p>
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.</jats:p><jats:p>
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.</jats:p>