Patients in 24-hour home care striving for control and safety

BACKGROUND This article concerns Swedish patients receiving 24-hour home care from health care assistants (HC assistants) employed by the municipality. Home care is a complex interactive process involving the patient, family, HC assistants as well as professional care providers. Previous studies exploring patient perspectives on home care have been based mainly on patient interviews. In contrast, the present study took a broad perspective on patients' experiences and thoughts by combining field observations on care situations with patient and HC assistant interviews. The aim of the study presented in this article was to promote a new and broadened understanding of patients receiving 24-hour home care by constructing a theoretical model to illuminate their main concern. METHODS Field observations and semi-structured interviews were conducted with four patients receiving 24-hour home care and their HC assistants. Grounded theory methodology was used. RESULTS The core process identified was Grasping the lifeline, which describes compensatory processes through which patients strived for control and safe care when experiencing a number of exposed states due to inadequate home care. Patients tried to take control by selecting their own HC assistants and sought safe hands by instructing untrained HC assistants in care procedures. When navigating the care system, the patients maintained contacts with professional care providers and coordinated their own care. When necessary, a devoted HC assistant could take over the navigating role. The results are illuminated in a theoretical model. CONCLUSIONS The results accentuate the importance to patients of participating in their own care, especially in the selection of HC assistants. The model illustrates some challenging areas for improvement within the organisation of 24-hour home care, such as personnel continuity and competence, collaboration, and routines for acute care. Furthermore, it may be used as a basis for reflection during the planning of care for individual patients within home care.