Both interaction with health care professionals, especially communication and continuity of care, and symptom management in children dying of cancer are associated with long-term parental grief levels.

Most parents in this study cited several reasons for not discussing death with their child. Our findings highlight the sensitive and complex issues surrounding these conversations, indicating that there may be a role for clinicians in supporting parents.

Faith was important for a minority of parents and was not associated with less long-term traumatic grief or symptoms of depression. The majority of parents remained hopeful. Hope for a cure was not associated with more long-term traumatic grief or symptoms of depression.

Emotional distress does not occur more often in childhood cancer survivors than in the normal population. No disease-related or treatment-related variable was independently associated with emotional distress.

ContextAlthough a large percentage of children with advanced-stage cancer die at home, remarkably little information is available regarding the experience of general practitioners (GPs) with respect to providing home-based palliative care to children with incurable cancer. ObjectivesTo explore the perspectives of GPs who care for children with advanced-stage cancer in a homebased setting. MethodsIn this cross-sectional study, 144 GPs who provided home-based palliative care to 150 children with incurable cancer from 2001 through 2010 were invited to complete a questionnaire addressing their perspectives regarding: 1) symptom management, 2) collaboration with other health care professionals, 3) the child's death and care after death and 4) impact of having provided palliative care, scored on distress thermometer (range 0-10). ResultsA total of 112 GPs (78%) responded, and 91 GPs completed the questionnaire for 93 patients.The median interval between the child's death and completing the questionnaire was 7 years.The most prevalent symptoms reported in the patients were fatigue (67%) and pain (61%).Difficulties with communicating with (14%), coordinating with (11%), collaborating with (11%), and contacting (2%) fellow members of the multidisciplinary treatment team were rare. Hectic (7%) and shocking (5%) situations and panic (2%) around the child's death were rare. GPs reported feelings of sadness (61%) and/or powerlessness (43%) around the time of the patient's M A N U S C R I P T A C C E P T E D ACCEPTED MANUSCRIPT3 death, and they rated their own distress level as relatively high during the terminal phase (median score: 6, range: 0-9.5). The majority of GPs (94%) reported that they ultimately came to terms with the child's death. ConclusionIn general, GPs appear to be satisfied with the quality of home-based palliative care that they provide pediatric patients with incurable cancer. Communication among healthcare professionals is generally positive and is considered important. Finally, although the death of a pediatric patient has a profound impact on the GP, the majority of GPs eventually come to terms with the child's death.