" I can't do it anymore": a qualitative study on the emergence of crisis in outpatient palliative care-the perspective of family caregivers.

Abstract

Background: The outpatient palliative care system is a central component of the palliative care structure in Germany, with family caregivers playing a vital role in ensuring and maintaining its success. However, crisis situations can destabilise and harm outpatient care. Previous studies have analysed hospitalisations and emergency admissions during palliative care. However, little is known about the factors that contribute to the emergence of crises in palliative outpatient care. The aim of this study was to identify factors contributing to the emergence of crisis in palliative outpatient care including the identification of protective strategies.

Methods: A qualitative study using semi-structured interviews with family caregivers recently involved in outpatient palliative care was performed. The analysis was conducted using thematic coding.

Results: A total of 15 family caregivers (13 female and 2 male) were recruited for the study. Crisis situations emerged through a cumulation of factors. Four categories of factors were identified: (1) structural factors, including limited access to health care professionals and a lack of necessary information, (2) illness related factors such as sudden progression in the illness trajectory and symptoms, (3) the intensity of care involvement and (4) emotional and psychological burden of family caregivers. A diverse range of protective strategies were employed by family caregivers, encompassing the involvement of the social network, the pursuit of information and the identification of a sense of purpose.

Conclusion: The findings of this study confirm the importance of providing continuous, competent, and empathetic care to both family caregivers and patients in palliative outpatient care. The study highlights the importance of expanding the palliative care infrastructure, as well as ensuring unrestricted access to palliative care professionals, developing tailored information tools for family caregivers, and reducing bureaucracy. Further studies are needed to identify additional influencing factors and evaluate effective measures.