How to involve the patient's network as active partners

Background/Objectives: In a national survey in 2005, dissatisfaction with information as well as lack of contact and cooperation were pointed out as major problems concerning carers’ and relatives’ experiences with the psychiatric system in Denmark,. The problem we set out to tackle was to improve relatives'/carers’ satisfaction on these issues by at least 30%.

Methods: Each of the participating 21 wards invited carers to join a response group. During the 15-months duration of the project, carer response groups and staff frequently met face-to-face, e-mailed and called each other. Carers commented on existing information materials, and some were actively involved in co-creative processes writing new materials. Carers were involved in designing new forms of contact between staff and carers. Several project teams used their carer response groups as active partners in training sessions on communication and cooperation with their colleagues.

Results: At baseline in the year 2005, only 34% of relatives/carers responding in the National Survey were satisfied with the contact they had experienced with the psychiatric wards. In the 2009/10 survey, satisfaction rate was 55% which shows an improvement of 64%. Staff attitudes and the culture towards cooperation with relatives/carers had changed from a passive to an active mode. Also staff communicative skills were improved and new methods and approaches to cooperation and co-working have been introduced. The professional secrecy has been debated and is no longer seen as a barrier to cooperation and patients are motivated to involve carers in their treatment. Also the organisational quality has been improved extensively by drawing up standard procedures for contact, information and cooperation with relatives/carers ensuring that all carers can expect the same service.

Discussion/Conclusions: Involvement and co-creative processes of cares are important for a better cooperation and dialogue in psychiatric treatment.

Funding: Public funding by Danish Regions and Government.

Keywords: Involvement of service users and carers, quality improvement, experience-based design.