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.
