Gemeinsamkeiten und Unterschiede in der spezialisierten ambulanten Palliativversorgung von Erwachsenen sowie Kindern und Jugendlichen: Ergebnisse aus Fokusgruppendiskussionen mit Leistungserbringer*innen

Abstract

BackgroundIn Germany, people with life-limiting conditions and complex symptoms are eligible for specialized outpatient palliative care (SOPC). Requirements, delivery and goals of SOPC have been laid down by the Federal Joint Committee in a nationwide guideline. The guideline emphasizes the need to consider the special needs of children and adolescents with life-limiting conditions. A specification of these needs has so far been missing. The focus group discussion presented here aimed at investigating similarities and differences between the specialized outpatient palliative care of adults (SOPC for adults) on the one hand, and children and adolescents (SOPPC) on the other hand, from the perspective of health care professionals in order to further define specifics of SOPPC. MethodIn three focus group discussions a total of 11 nursing and 8 medical professionals from SOPC for adults and SOPPC engaged in face-to-face discussions on the similarities and differences of both care forms. Discussions were designed openly and stimulated with three guiding questions only. Focus group discussions were audio-recorded, transcribed verbatim and analyzed by thematic analysis supported by the software MAXQDA. ResultsWithin the following six themes, similarities as well as key differences between SOPC and SOPPC were identified: the participants discussed diseases, coverage area and locations, therapy goals, the psychosocial care situation, the role of relatives and end-of-life care. From the participants’ perspective different underlying diseases constitute a main difference that causes further differences in the expertise required. Furthermore, SOPC for adults and SOPPC differ in the dimension of areas covered by one team, the number of patients per team and the reasons for SOPC visits. Differences in terminal care and the mourning process within the team became evident. Some similarities existed regarding goal-setting, psychosocial care and the role of relatives, but concrete patterns and the importance of these aspects differed because a particularly complex and emotional communication is required when a child is dying. ConclusionFrom the perspective of health care professionals, SOPC for adults and SOPPC differ with regard to underlying diseases as well as care patterns such as collaboration with relatives and their need for psychosocial support. Therefore, the care for children, adolescents and young adults with life-limiting conditions and pediatric diseases all over Germany should be delivered within the frame of an independent care structure by teams whose members possess specific pediatric expertise.