Patients as boundary subjects in home care: How patients and their relatives coordinate (inter-)professional work

Home care typically requires healthcare professionals to coordinate their interdependent work. As existing research has shown, though, for professionals, coordination can be challenging for several reasons, such as time constraints, professionals' spatial separation, and information and communication systems that are not integrated. Our qualitative study investigated eight best-practice cases of home care in Germany and found early on that in these cases patients, as boundary subjects, actively coordinated (inter-)professional work. We therefore explored how patients coordinated home care, including cases where relatives acted as patients' spokespersons. We inductively analyzed 29 interviews, 9 non-participatory observations, and 59 informal conversations. Our findings reveal two distinct coordination approaches: (1) coordination by continuous synchronization, in which patients or relatives continuously direct, integrate, and monitor the work of healthcare professionals, and (2) coordination by initial configuration, in which patients or relatives set clear objectives and promote interprofessional connections at the onset of the collaboration. While the three areas of coordination-professionals' work execution, information and professionals' information exchange, and scheduling of professionals' work-are the same in both approaches, the efforts applied to achieve coordination are distinct. We contribute to the understanding of coordination of (inter-)professional work in home care by unpacking the involvement of patients and relatives in coordination work. Our research may inform the development of programs and policies to improve home care, either by empowering patients and their relatives or by establishing mechanisms and involve other actors to manage coordination when patient or relative involvement is limited or not feasible.