How Do Relatives Experience Advanced Home Care? A Qualitative Study

The provision of around-the-clock care by advanced home care services subjects families and relatives in Germany to significant psychosocial demands. In addition to coping with the serious illness of their family member, they have to compensate for the lack of privacy caused the constant presence of a nurse. Accordingly, they feel ambivalent about caregivers. The qualitative study conducted narrative interviews that addressed the question as to how relatives and families experience home mechanical ventilation. It was possible to identify two main topics: the burdens and health-maintaining resources resulting from the care setting. The main burdens that are experienced include living in a public space, the lack of psychosocial support from service providers, as well as the lack of professional and social skills of the caregivers interacting with families.