Exploring Experiences of Informal Caregivers with Hospital Care at Home for patients with Heart Failure

Abstract

Background Hospital care at home is a nurse-led program for patients with deteriorated heart failure with continuous intravenous medication. Informal caregivers of patients with heart failure are known to experience problems with their own well-being, having insufficient support and have lack of knowledge. These may increase during the program. However, the experiences of informal caregivers with hospital care at home are yet unknown. Aim The study aims to explore the experiences with hospital care at home of the informal caregivers of patients who were enrolled in the hospital care at home program for deteriorated heart failure. Method A generic explorative qualitative study was conducted, with use of semi-structured interviews of informal caregivers. Data were analyzed using thematic analysis by Braun and Clarke. Results During the analysis of the ten interviews five themes emerged: 1)Motivations for hospital at home, where informal caregivers saw it as their task as significant other, 2)Process of the program, where informal caregivers lacked information, 3)Mental load for informal caregiver, 4)Persevere hospital at home program and 5)Context, where home situation and patient characteristics influenced the burden of informal caregivers. Conclusion Informal caregivers had doubts about safety by lacking information about the program. Their home situation and the patient characteristics influenced the burden of the informal caregivers. However, they saw it as their task as significant other to take the role of informal caregiver during the program. Implications of key findings It is recommended to investigate how informal caregivers can be educated about the program. Also, health professionals involved in the program need to be aware of the context of the informal caregiver and patient in order to arrange a sufficient support system.