Distributed Home Care Solutions: Possibilities and Limitations

Hospital-initiated services offering follow-up of patients in their own homes represent new possibilities to strengthen the competence in a two- or even three-way relationship. Not only primary health care services strengthen their knowledge of certain problems or issues, also specialist care widen their understanding of the local context and the priorities of the patient. Patient and family carers expand their insight into risks and strengthen their knowledge base of choices and priorities in everyday life. Such services also provide more intensive and systematic follow-up; create safety for all parties; reduce the need for travelling and costly hospital beds; possibility for earlier return to the patients own home; and, as a consequence, improved quality of life. Limiting factors include the capacity of the individual patients, their families and local services to make use of the service, incl. to plan, organize and administer the technological apparatus, aids and procedures. As a consequence, also lack of involvement and communication between specialist and primary care services represent challenges. In the longer run, the possibility of primary care services to participate in and adapt to a growing number of hospital-initiated services within the area of municipal /primary care services, may represent a limitation. A condition for the new services to become successful is therefore early involvement of all actors across service levels. Further conditions are good procedures, with a clear distribution of tasks and responsibilities, planning, timing and moderation. In the Norwegian context, the role and involvement of the general practitioners represent a particular challenge. Also the duration of the service offer must be clear and explicit, and the distribution of responsibility between specialist and primary care services under as well as after the limited service/intervention. Further, a focus on communication and the participation of all actors, development of shared terminology, and a concern with dignity and data protection, turn out to be of central importance. Access to technology and support, but also clear distribution of responsibility and financing, are also conditions for successful establishment of new, distributed services. Many projects are currently based on project funding and own investments on behalf of specialist care services. It is a precondition for projects to enter a new stage as part of ordinary services that the issue of financing and responsibility is cleared. New, distributed telecare services in primary care often offer patients/users new possibilities regarding a more active and self-determined everyday life; own choices and priorities; maintenance of social networks; and strengthened opportunities to stay at home longer. They provide opportunities for family carers to combine care and work, and to care for oneself and make space for a life outside of caring responsibilities, as safety is taken care of by other persons and technologies. There are however also technical limitations, connected for instance to traceability and battery capacity in GPS-systems, and there are limits to what technologies can do and contribute with. There are many things technologies cannot do, that assume and require assistance delivered by human service providers. New technologies do not replace social networks, services or care needs, but assume a network of human resources in order to work in the first instance. They have to be considered, not separately, but as part of care services. Technologies contribute to redistribute tasks and responsibilities in the networks around patients/users. Other limiting factors are, again, capacity and competence with patients/users, family carers, and primary care services. Family carers will often be assumed to take on tasks and responsibilities which can be difficult to handle, and where primary care services have to step in. It is of vital importance that the competence and capacity locally is strong enough to provide safety for all parties. New, distributed telecare services go across established forms of organisation, involve multiple levels and actors, and new actors. Some actors, such as patients, family carers and volunteers, are attributed new roles. It is therefore a precondition for success that this is assumed from the start on, i.e. that all involved actors are involved in services development and establishment. System and service development must take its starting point in the services new technologies are supposed to be part of, and be based on principles of interactive, in-home /in-use system development with opportunities for feedback and user participation. It is central importance that development processes are designed to allow for adjustment and flexible development of services over time.

This project will investigate the development of distributed home care solutions. Specifically, it will focus on the role of technology in the delivery of home care services at a distance, targeted at three user groups; the frail elderly, the chronically ill and persons suffering from terminal illness. The study sets out to examine current practices in three related fields: 1)the use of telecare solutions in home care for the frail elderly and chronically ill, 2) ECG heart monitoring and rehabilitation of patients with heart failure 3) care for dying patients entering into a palliative trajectory. Special emphasis is given to the role of geography (Oslo area versus Northern Norway) and the role of patients and informal caregivers. Through a critical ana lysis of the dynamics that facilitate or hamper the coordination and integration of care, the study explores the transformational work required for the emergence of innovative, user-centered, distributed home care solutions in a Norwegian context. This study draws on a repertoire of theoretical and methodological resources from important strands of health care research that are informed by recent developments in social studies of science, technology and medicine, of socially embedded knowledge practices and technology. Also the project involves the close collaboration and formal engagement in two EU-founded research projects on telecare and eHealth: the EFORTT-project (to be completed in 2011) and ICT for health, which runs until 2013.The three empiric al, ethnographic case studies employ participant observation, formal and informal interviews, focus group interviews and document analysis as the main data collection techniques. Building on the joint outcomes from these case studies, the aim of the proje ct is to achieve interdisciplinary knowledge on the development and coordination of innovative home care solutions and to formulate implications for policy making.