Häusliche Palliativversorgung von Kindern: Eine Meinungsumfrage bei verwaisten Eltern nach unheilbarer onkologischer Erkrankung

Zusammenfassung

Hintergrund: In Deutschland sterben jährlich etwa 500 Kinder an malignen Erkrankungen. Viele dieser Familien wünschen sich eine häusliche Versorgung in der Lebensendphase.

Methoden: In einer Befragung wurden Familien, deren Kinder in der Zeit vom 01.02.2003 bis 30.09.2009 vom Kinderpalliativteam (PPCT) zu Hause versorgt wurden, eingeschlossen. Der Fragebogen enthielt 87 Items. Die Antwortoptionen umfassten nominalskalierte Variablen und eine numerische Rating Skala (NRS; 1–4, niedrigste bis höchste Zufriedenheit).

Ergebnisse: 84 Angehörige von 49 Kindern nahmen an der Befragung teil (Rücklaufquote 53,2%). Die Betreuungszeit lag zwischen 3-246 Tagen. Alle 49 Patienten verstarben zu Hause. 98,8% der Befragten waren mit der Entscheidung für eine häusliche Palliativversorgung zufrieden. Die häufigsten Symptome waren Schmerzen (86,9%) und Fatigue (85,7%). Die Symptomkontrolle gelang gut (NRS 3,55±0,49). Die Befragten waren mit der Kommunikation (NRS 3,73±0,57) und der Betreuung in der Sterbephase (NRS 3,85±0,90) zufrieden. Die Zufriedenheitswerte für die psychosoziale Versorgung (NRS 3,24±0,87) fielen signifikant niedriger aus (p<0,05). Eltern, die nach dem Tod des Kindes telefonisch und persönlichen Kontakt zum PPCT hatten, waren zufriedener mit der Nachsorge.

Schlussfolgerung: Aus elterlicher Sicht ist eine häusliche Versorgung kinderonkologischer Pa­tienten zufriedenstellend lösbar. Die Symptomkontrolle gelingt auch im häuslichen Milieu.

Abstract

Introduction: 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.

Discussion: From parental view satisfying home-care of children with cancer is feasible. Symptom control succeeds in a home setting.

Schlüsselwörter

pädiatrische Palliativ­versorgung - Sterbebegleitung - häusliche Versorgung - verwaiste Eltern - Krebserkrankung

Key words

pediatric palliative care - end-of-life care - home care - orphaned parents - cancer

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