Caring beyond hospital walls: Informal caregivers’ experiences in a virtual and in-person hybrid hospital-at-home

Hospital-at-Home (HaH) models deliver hospital-level care in patients’ homes, with some models relying on informal caregivers for support. While HaH might improve patient experience, excessive family involvement may lead to unintentional stress and unmet needs for both patients and their informal caregivers. Understanding user experiences is essential for designing person-centered HaH models. This study explored informal caregivers’ experiences with Influenzer, a hybrid HaH program combining telemedicine and in-person home visits. We conducted a qualitative study using semi-structured interviews with 16 participants recruited during the feasibility phase of the Influenzer program at Copenhagen University Hospital – North Zealand in Denmark. Interviews were analyzed inductively using reflexive thematic analysis, informed by phenomenological principles. Two overarching themes were generated: (1) Being the primary informal caregiver supporting a home hospitalized patient was an experience of ambivalent feelings, (2) Informal caregivers were individuals with different relationships, roles, experiences, and needs – some of which were unmet. Many caregivers reported insufficient involvement in decision making and limited guidance on symptom observation and response. The Influenzer program was generally preferred over hospital admission, yet informal caregivers experienced insecurity linked to unclear roles and responsibilities. Future HaH models should integrate early involvement, tailored information, and structured support to reduce caregiver burden. ClinicalTrials.gov NCT05087082, Date: 2021-10-08.