Informal service user mobilisations within civil society
Researcher Faten Nouf from Umeå University is studying the role that online forums may play for people experiencing mental ill health and for family members and other carers. During a webinar organised by UserInvolve, the forums and their significance for community, reflection, and public education were among the topics discussed.
Finding others with whom to share experiences through social media groups and chats has become increasingly common, both for people experiencing mental ill health themselves and for relatives of someone who is struggling. These groups operate independently of formal support structures and are driven by the engagement of individual participants.
What function can online forums serve for people experiencing mental ill health or for family members and other carers? What experiences do people share? These are questions that researcher Faten Nouf from Umeå University is currently investigating in a study conducted within the UserInvolve research program.
At a UserInvolve Forum held in late 2025, the emergence of these digital “self-help groups” was discussed as input to the ongoing research study. The webinar also featured Helena Forsman from the service user organisation Frisk & Fri and Bo Ardström, former Executive Director of the service user organisation RSMH, as discussants.
Constantly accessible with no demands on performance
During the webinar, participants noted several factors that make online forums popular. They are constantly accessible, often allow anonymity, and enable people to participate to the extent they wish without making a formal commitment. Unlike many traditional support groups, they are also free from time restrictions. Bo Ardström suggested that these groups may compensate for poorly person-centred care and an uncaring healthcare culture. When people do not feel understood in encounters with health or social care services, they seek out alternative communities. – They can become a way of feeling included and accepted. Many people feel they do not belong anywhere. In those situations, a sense of community and companionship becomes extremely important, according to Ardström.
Helena Forsman from Frisk & Fri noted that there has previously been some concern about these open groups, as they may contain content that can be triggering. – There can be valuable support to gain, but it is important that there are clear guidelines for how such a forum should operate in a supportive and constructive way, she said.
Challenges associated with online forums include varying levels of knowledge among participants, discussions that may deteriorate in the absence of rules and moderation, and uncertainty regarding the group's long-term purpose.
According to Faten Nouf, important questions for future research include: When do these groups cease to be helpful? When is it time to leave?
The importance of being able to provide support
Many people join these groups to seek help, but there is also a desire to share experiences and support others. Being able to create hope through one's own story is important. The experiences that many people carry represent valuable knowledge, and using that knowledge to support others can create a sense of meaning.
Bo Ardström argued that too little attention is paid to the popular education aspect of digital self-help groups: How do we capture what has been educational and meaningful in these discussions?
Faten Nouf agreed that the popular education dimension is important, as is the knowledge that participants take away from these forums. – I think this is a perspective that could be explored further in research discussions on online forums, she said.
Members of the research team: Faten Nouf (Principal Investigator, Umeå University) Urban Markström (Umeå University).
