“I see myself as part of the team” – family caregivers’ contribution to safety in advanced home care

Background: The use of medical technology and the various contributing and interdepending human factors in home care have implications for patient safety. Although family caregivers are often involved in the provision of advanced home care, there is little research on their contribution to safety. The study aims to explore family caregivers in Home Mechanical Ventilation (HMV) safety experiences and how safety is perceived by them in this context. Furthermore, it seeks to understand how family caregivers contribute to the patients’ and their own safety in HMV and what kind of support they expect from their health care team. Methods: An explorative, qualitative study was applied using elements from grounded theory methodology. Data were collected through individual interviews with 15 family caregivers to patients receiving HMV in two regions in Germany. The audiotaped interviews were then subject to thematic analysis. Results: The findings shows that family caregivers contribute to safety in HMV by trying to foster mutual information sharing about the patient and his/her situation, coordinating informally health care services and undertaking compensation of shortcomings in HMV. Conclusion: Consequently, family caregivers take on considerable responsibility for patient safety in advanced home care by being actively and constantly committed to safety work. Nurses working in this setting should be clinically and technically skilled and focus on building partnership relations with family caregivers. This especially encompasses negotiation about their role in care and patient safety. Support and education should be offered if needed. Only skilled nurses, who can provide safe care and who can handle critical situations should be appointed to HMV. They should also serve as professional care coordinators and provide educational interventions to strengthen family caregivers’ competence.