Mitbetreuung und Einbeziehung von Angehörigen in Comprehensive Cancer Centern – eine Erhebung der AG Palliativmedizin der von der Deutschen Krebshilfe geförderten Onkologischen Spitzenzentren

Zusammenfassung

Einleitung Eine leitliniengerechte onkologische Versorgung umfasst nicht nur die frühzeitige palliativmedizinische Mitbetreuung unheilbar erkrankter Patienten, sondern auch die Mitbetreuung ihrer Angehörigen. Untersuchungen zur Umsetzung im klinischen Alltag in Deutschland fehlen.

Methoden Die AG Palliativmedizin im Netzwerk der von der Deutschen Krebshilfe geförderten Onkologischen Spitzenzentren (CCC) führte mit einem selbstgestalteten Fragebogen eine systematische Erfassung aller Angebote in den CCC/in der spezialisierten Palliativversorgung (SPV) im CCC/lokal außerhalb des CCC an allen Standorten durch.

Ergebnisse Gut etabliert in den 17 CCC/in der SPV sind die psychoonkologische (100 %/94 %), sozialrechtliche (94 %/100 %) und seelsorgerische Beratung der Angehörigen (je 94 %) sowie Angebote für Kinder erkrankter Eltern (88 %/100 %) und Informationsmaterialien (je 88 %). Häufiger als im restlichen CCC werden in der SPV pflegerische Schulungen (77 %/94 %) und Familienkonferenzen (59 %/88 %) durchgeführt. SOPs sind mit 23 %/18 % selten etabliert, ebenso wie Screenings der Angehörigenbedürfnisse (0/24 %). Trauer- und Selbsthilfegruppen sind mit je 82 % häufiger außerhalb der CCC verfügbar. Die psychoonkologische/sozialrechtliche Beratung und Angebote für Kinder erkrankter Eltern (je 94 %) wurden als am wichtigsten für ein CCC eingeschätzt. Für die SPV waren es zudem die pflegerische Schulung sowie Informationsmaterialien (je 94 %). SOPs wurden mit 47 %/41 % als sehr/extrem wichtig betrachtet, und Screenings der Angehörigenbedürfnisse mit 53 %/65 %.

Schlussfolgerung Psychosoziale/seelsorgerische Beratung der Angehörigen sowie Angebote für Kinder erkrankter Eltern sind in den CCC entsprechend ihrer Bedeutung gut etabliert, in der SPV auch pflegerische Schulungen und Familienkonferenzen. SOPs zur Mitbetreuung und Einbeziehung von Angehörigen sowie Screenings der Angehörigenbedürfnisse müssen dringend implementiert werden.

Abstract

Background According to current oncological guidelines, early integration of specialist palliative care (SPC) represents standard cancer care supporting not only the patients, but also their family caregivers. Data on the actual implementation in daily oncology practice in Germany are lacking.

Methods The Palliative Care Working Group of the network of Comprehensive Cancer Centers certified by the German Cancer Aid (CCC) assessed the implementation of measures for family caregiver support and involvement within the CCC/within SPC in the CCC/local outside the CCC in all 17 CCC locations.

Results In the CCC/in SPC psycho-oncological (100 %/94 %), social (94 %/100 %) and spiritual counselling of family caregivers (94 % each) as well as support for children with parental cancer (88 %/100 %) and information materials for family caregivers (88 % each) are well established. Training on nursing skills (77 %/94 %) and family conferences (59 %/88 %) are established more frequently within SPC than in the rest of the CCC. SOPs are rather rare (23 %/18 %) as well as screenings for family caregiver needs (0/24 %). Bereavement or self-help groups are with 82 % each more frequent locally outside the CCC. Psycho-oncological and social counselling as well as support for children with parental cancer were scored as most important (94 % each). For SPC, training on nursing skills and information materials were rated equally (94 % each). SOPs were rated as very/extremely important in 47 %/41 % and routine screening for family caregiver in 53 %/65 %.

Conclusion In correspondence to their importance, psychosocial and spiritual counselling and support for children with parental cancer are well implemented in CCC. In SPC, training on nursing skills and family conferences are also well implemented. SOPs for family caregiver support and involvement as well as routine screenings for family caregiver needs have to be implemented urgently in the CCC.

Schlüsselwörter

Angehörige - Unterstützung - Comprehensive Cancer Center - Palliativmedizin

Key words

family caregiver - support - counselling - Comprehensive Cancer Center - palliative care

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