Opportunities and Tensions in Self-Help-Organizations As a Consequence of Participation Practices – Results from a Multiple Case Study in Austria

Background. Self-help organizations (SHOs) as supra-organizations of self-help groups (SHGs) accumulate experiential knowledge on structural deficits in healthcare and suggest improvements of healthcare provision. Therefore, SHOs mediate between SHGs and the healthcare system. In Austria, SHOs are neither systematically funded by government nor do they have an official mandate for patient representation. SHOs, when mediating/participating, are in a field of tensions both within the self-help-field and between the self-help-field and the healthcare system. The aim of the study was to examine the participative practices of SHOs and associated tensions.

Methods. A multiple case study approach was used to examine 15 SHOs in Austria on national and country level. Data were retrieved from semi-structured interviews with representatives of the organizations (board members, staff, SHGs) and published documents. Data were analyzed using thematic analysis.

Results. SHOs use multiple ways to inform the public and healthcare about patients’ needs and to make suggestions for improvements. These include PR-work, networking and participation on healthcare boards. Their role in these boards is mostly consultative. Participation in decision-making is rarely offered but would be appreciated as sign of equality among board members. A major challenge for participation is a lack of resources, both financially and regarding the means of voluntary members. This results in only few very engaged voluntary activists carrying out participative activities.

Discussion. Participation on healthcare boards offers SHOs an opportunity to make their voice heard, to raise awareness for their topics/concerns and to network. Although decision rights would be appreciated, awareness work and networking seem more important. Volunteers representing patients are at risk of being overstrained, but they have a key-role for mediating activities, bringing up needs in board-meetings and communicating issues from board discussions to SHGs. Especially the latter is at risk due to scarce resources.