title: [Palliative home care of children: an opinion survey of orphaned parents].
abstract: BACKGROUND
  In Germany, 500 children die of malignancies per year. Many families wish to be cared for in a home setting at the end-of-life.
  
  
  METHODS
  Families of children who were cared for by the paediatric palliative care team (PPCT) in a home setting between 01.02.2003 to 30.09.2009 were included in the survey. The questionnaire consisted of 87 items with nominal scaled variables and numeric rating scales (NRS; 1-4, lowest to highest satisfaction) as response options.
  
  
  RESULTS
  84 relatives of 49 children participated (response rate 53.2%). Duration of care varied between 3-246 days. All 49 patients died at home. 98.8% of the respondents were satisfied with their decision for home care. The symptoms pain (86.9%) and fatigue (85.7%) were reported most frequently. Satisfaction with symptom control was high (NRS 3.55±0.49). The respondents were satisfied with communication (NRS 3.73±0.57) and end-of-life care (NRS 3.85±0.90). Satisfaction with psychosocial care (NRS 3.24±0.87) was significantly lower (p<0.05). Parents who stayed in contact with the PPCT by phone and in person were more satisfied with aftercare.
  
  
  CONCLUSIONS
  From parental view satisfying home-care of children with cancer is feasible. Symptom control succeeds in a home setting.
authors.affiliation: Klinik für Kinder-Onkologie-Hämatologie und Klinische Immunologie, Zentrum für Kinder- und Jugendmedizin, -Medizinische Fakultät, Heinrich-Heine-Universität, Düsseldorf.
authors.forename: M
authors.initials: M
authors.lastname: Kuhlen
authors.affiliation: Klinik Wersbach, Fachklinik für Psychosomatische Medizin und Psychotherapie, Leichlingen.
authors.forename: A
authors.initials: A
authors.lastname: Schlote
authors.affiliation: Klinik für Kinder-Hämatologie, -Onkologie und -Immunologie, Universitätsklinikum Düsseldorf, Düsseldorf.
authors.forename: A
authors.initials: A
authors.lastname: Borkhardt
authors.affiliation: Klinik für Kinder-Onkologie-Hämatologie und Klinische Immunologie, Zentrum für Kinder- und Jugendmedizin, -Medizinische Fakultät, Heinrich-Heine-Universität, Düsseldorf.
authors.forename: G
authors.initials: G
authors.lastname: Janßen
mesh_terms: D000293:Adolescent; D001601:Bereavement; D002648:Child; D002675:Child, Preschool; D003142:Communication; D003258:Consumer Behavior; D003625:Data Collection; D005240:Feasibility Studies; D005260:Female; D005858:Germany; D006699:Home Care Services; D006801:Humans; D007223:Infant; D008297:Male; D009369:Neoplasms / Q000523:psychology* / Q000628:therapy*; D059408:Pain Management / Q000379:methods / Q000523:psychology; D010166:Palliative Care / Q000379:methods* / Q000523:psychology*; D010290:Parents / Q000523:psychology*; D010348:Patient Care Team; D011368:Professional-Family Relations; D011795:Surveys and Questionnaires; D013727:Terminal Care / Q000379:methods / Q000523:psychology; D055815:Young Adult