title: Parents' perspective on symptoms, quality of life, characteristics of death and end-of-life decisions for children dying from cancer.
abstract: BACKGROUND
  In the present study, we investigated the situation of children who had succumbed to their malignancy in Germany as perceived by their parents. Specifically, we were interested in bereaved parents' perspective on five essential areas: 1) symptoms and quality of life, 2) characteristics of the child's death, 3) anticipation of their child's death and care delivery, 4) end-of-life decisions and 5) impact of the child's death on the parents and perceived social support by the health care team.
  
  
  METHODS
  We contacted all existing departments for paediatric oncology in the German federal state of Nordrhein Westfalen and asked them to contact all parents for participation in our study who had lost their child to cancer in 1999 and 2000. Upon agreement, we interviewed the parents utilising a validated semi-structured interview on distressing symptoms and quality of life of their children during the end-of-life care period.
  
  
  RESULTS
  Six of the 19 departments agreed to participate. Parents of 48 children (31 boys, 17 girls) were interviewed. The main distressing symptoms were fatigue, pain, loss of appetite, and dyspnoea according to the parents. While parents perceived pain and constipation to have been treated successfully, loss of appetite and anxiety were not treated effectively. 75% of the children died due to a progression of their malignancy. Of these, 50% obtained cancer-directed therapy at the end of life, which was negatively rated by the parents in hindsight. 48% of the children died at home even though 88% of the parents chose 'at home' as the most appropriate locale of death in hindsight. Parents anticipated their child's death on average 9 weeks prior to the child's death. 41% of the parents provided palliative home care for their child and the majority (88%) rated the quality of care as good or very good. 64% discussed end-of-life decisions with the health care team, 36% did not have a discussion. Parents were clearly affected by their child's death. However, 15% of the parents were not contacted by the health care team following the child's death.
  
  
  CONCLUSIONS
  The present study demonstrated that psychological symptoms (e.g. anxiety) are frequent symptoms in the end-of-life care period and cause severe suffering in the children. Questions in terms of benefits and costs of cancer-directed therapy in the end-of-life care period need to be addressed in future prospective studies. Parents' perspective on their child's death and related end-of-life decisions highlighted the importance of communication between parents and the health care team. Future studies need to investigate potential barriers in the communication between parents and the team to optimise end-of-life decisions and hence, reduce parents' long-term distress. In line with the previous, the present data demonstrated that there is still a lack of routine contact from the health care team following the child's death despite existing guidelines. Research is therefore needed into the implementation of guidelines for routine contact into clinical practice following a child's death.
authors.affiliation: Vodafone Foundation Institute for Children's Pain Therapy and Paediatric Palliative Care, Children's and Adolescents' Hospital Datteln, Witten/Herdecke University, Germany.
authors.forename: T
authors.initials: T
authors.lastname: Hechler
authors.forename: M
authors.initials: M
authors.lastname: Blankenburg
authors.forename: S J
authors.initials: SJ
authors.lastname: Friedrichsdorf
authors.forename: D
authors.initials: D
authors.lastname: Garske
authors.forename: B
authors.initials: B
authors.lastname: Hübner
authors.forename: A
authors.initials: A
authors.lastname: Menke
authors.forename: C
authors.initials: C
authors.lastname: Wamsler
authors.forename: J
authors.initials: J
authors.lastname: Wolfe
authors.forename: B
authors.initials: B
authors.lastname: Zernikow
mesh_terms: D000293:Adolescent; D001007:Anxiety / Q000523:psychology; D001293:Attitude to Death; D001601:Bereavement; D002648:Child; D002675:Child, Preschool; D003258:Consumer Behavior; D018450:Disease Progression; D004417:Dyspnea / Q000523:psychology; D005221:Fatigue / Q000523:psychology; D001068:Feeding and Eating Disorders / Q000523:psychology; D005260:Female; D005858:Germany; D006699:Home Care Services; D006701:Home Nursing / Q000523:psychology; D006801:Humans; D007223:Infant; D008297:Male; D009369:Neoplasms / Q000523:psychology* / Q000628:therapy; D010146:Pain / Q000523:psychology; D010166:Palliative Care / Q000523:psychology*; D010290:Parents / Q000523:psychology*; D010348:Patient Care Team; D011368:Professional-Family Relations; D011788:Quality of Life / Q000523:psychology*; D012803:Sick Role; D013727:Terminal Care / Q000523:psychology*