title: Children dying from cancer: parents' perspectives on symptoms, quality of life, characteristics of death, and end-of-life decisions.
abstract: In this study, we investigated the experience of children who died of cancer, as perceived by their parents. All the pediatric oncology departments in one German federal state were contacted and asked to invite parents who had lost a child to cancer in the period 2005-2006 to participate. Those parents who accepted were interviewed by means of a semi-structured questionnaire. In the participating 16 departments, 158 children died in 2005-2006. Parents of 48 children (38.3 percent) agreed to participate and were interviewed. Nearly all of the children had suffered from at least one distressing symptom. Pain and fatigue occurred most frequently. Symptoms were successfully treated over 65 percent of the time. In all, 64 percent of the children received home care services; 50 percent died at home, and only 10 percent in the ICU. Results suggest that some progress has been made in pediatric palliative care. To further improve end-of-life care for children with cancer, it is also necessary to evaluate parents' perspectives on structures for pediatric palliative care delivery.
authors: Pediatric Palliative Care Centre and German Pediatric Pain Centre, Children's and Adolescents' Hospital, Datteln, Germany. p.vonluetzau@kinderklinik-datteln.de
authors: Pia
authors: P
authors: von Lützau
authors: Michael
authors: M
authors: Otto
authors: Tanja
authors: T
authors: Hechler
authors: Sabine
authors: S
authors: Metzing
authors: Joanne
authors: J
authors: Wolfe
authors: Boris
authors: B
authors: Zernikow
mesh_terms: D001293:Attitude to Death; D001294:Attitude to Health; D002648:Child; D003657:Decision Making; D005260:Female; D005858:Germany; D006699:Home Care Services / Q000706:statistics & numerical data; D006801:Humans; D008297:Male; D009369:Neoplasms / Q000628:therapy*; D010166:Palliative Care; D010290:Parents / Q000523:psychology; D011787:Quality of Health Care; D011788:Quality of Life