"If they were to stop coming, I'd panic" Palliative care networks from the perspectives of patients and informal care givers

Objective This study examines the perspectives of patients and family caregivers on outpatient palliative care networks. It contrasts primary palliative care (AAPV) and specialized outpatient care (SAPV) services, particularly in regard to pain management. Methods The study is based on 27 semi-structured, problem-focussed interviews with 21 patients and 19 informal caregivers. Recruitment was based on purposive sampling in two regions of Brandenburg, Germany. The data were analysed using qualitative content analysis. Results In AAPV, the general practitioner (GP) is both the central point of contact as well as the coordinator of the care network. In SAPV, the GP plays a less important role. This can lead to conflicts between GPs and health care professionals of the palliative care team. Compared to AAPV, palliative care teams are attributed greater intervention capacities in acute situations as well as expertise in pain therapy. Thus, the option of parenteral administration of opioids is considered a benefit of specialized care. The use of nursing services varies considerably depending on the individual care network-in some cases care is completely taken over by relatives. Relatives are the closest to the patient within the care network and perform key tasks. Conclusion The personal and professional composition of networks of outpatient palliative care varies individually according to care situation and form. Care networks of AAPV and SAPV differ with regard to the accessibility of health care professionals and pain therapy. Home-based palliative care is often made possible by informal care givers in the first place.