Recognizing first-person expertise: a key tool to combat stigma
Summary
In recent years, mental health services have made significant progress towards more community-based, comprehensive and human rights-sensitive care models. The network has progressively incorporated perspectives oriented towards recovery, continuity of care and participation , the result of the involvement of professionals and teams that have driven relevant changes in daily practice.
This journey has allowed us to generate a solid foundation from which to address increasingly complex challenges. However, the stigma associated with mental health continues to be present within services, often in a subtle and normalized way. It manifests itself in paternalistic dynamics, in difficulties in sharing decisions or in the tendency to prioritize professional criteria over the lived experience of the people being treated. This stigma is not the result of a lack of commitment, but of historical models that have placed expert knowledge at the center of intervention.
In this context, recognizing the expertise of the first person becomes a key step to continue moving forward . Not as an amendment to the path taken, but as an evolution consistent with the values that the network itself has been incorporating: human rights, person-centered care and quality of care. When lived experience is not recognized as knowledge, stereotypes of incapacity and dependence are reinforced, central elements of stigma in mental health.
International human rights frameworks clearly point towards this paradigm shift. Initiatives promoted by the World Health Organization, such as the QualityRights model, point to the need to transform mental health services to ensure real participation of people, shared decision-making and the reduction of stigmatizing and coercive practices. In this sense, integrating first-person expertise is not just a recommendation, but a condition for guaranteeing rights and quality of care.
The Collection of good practices for combating stigma and discrimination in community mental health services , edited by Obertament, shows that this change is already occurring in different devices, based on specific experiences promoted from within the network itself.
But what exactly does it mean to recognize first-hand expertise in the field of mental health? And, above all, how does this recognition translate into real practices that actively contribute to combating stigma, preventing discrimination and transforming decision-making within services?
What do we understand by first-person expertise from an anti-stigma perspective?
First-person expertise refers to the knowledge that is built both from the direct experience of one's own emotional distress and from the experience of services, treatments and care relationships. This knowledge allows us to identify situations of discrimination and stigmatizing micro-practices that often remain invisible.
From an anti-stigma perspective, recognizing this expertise implies:
- Question the idea that people with mental health problems cannot decide.
- Review asymmetrical power relations.
- Recognizing people's ability to define what is a good deal.
- Generate real spaces of co-responsibility.
When lived experience is recognized as legitimate knowledge, stereotypes are dismantled and more horizontal relationships are built , key elements for moving towards services free of stigma and discrimination.
The recovery model from the perspective of its protagonists
Good practices that combat stigma from within services
The collection prepared by Obertament aims to highlight that the fight against stigma is more effective when it is embodied in real changes in the organization and culture of services, which translates into:
Peer support: building bonds that reduce stigma
The incorporation of peer support figures directly challenges the idea that only traditional professional knowledge is valid. These new professional figures provide experience-based support, foster trust and help reduce self-stigma, while also being able to transform relationships within teams.
Shared decision-making: moving towards more horizontal relationships
Tools such as Advance Decision Planning or the Individualized Treatment Plan (ITP) can help combat one of the most common forms of institutional stigma: the denial of the ability to decide. In the case of ITPs, this is only possible when they are truly led and co-created with the person, based on their experience, preferences and priorities, and not simply documents defined from a professional perspective. When people participate effectively in decisions about their process, co-responsibility and respect for rights are reinforced.
Participation in governance: addressing structural stigma
The participation of the first person in governance spaces, driving groups or continuous improvement processes allows for the identification of normalized discriminatory practices and their collective review. This participation is especially relevant when it includes decisions related to architecture, the organization of spaces and the daily operation of services . Incorporating the perspective of the people who use the services in these areas contributes to generating more accessible, safe and respectful environments, and directly impacts the culture of the service, consolidating a rights-based perspective.
Experiential learning: reviewing beliefs and practices
The incorporation of people with their own experience in training actions facilitates critical reflection processes within teams, helping to identify biases, stigmatizing language and practices that may unintentionally violate rights.
Mutual support groups in the field of mental health
Pending challenges in the fight against stigma
Despite the progress, persistent challenges can still be observed. Change processes often generate understandable uncertainties and resistance, especially in healthcare environments subject to high pressure, responsibility and complexity. The fear of losing professional control, lack of time or the difficulty of translating participation into real changes can mean that, in some cases, it becomes more formal than effective. Facing these challenges requires institutional support, spaces for shared reflection, time and resources, as well as a clear commitment to consolidating a culture of rights within the services.
The fight against stigma in mental health cannot be limited to specific awareness-raising actions. It requires structural changes in the way services are organized, how decisions are made and how people's knowledge is recognized. Integrating first-hand expertise is one of the most powerful tools to move towards care that is truly free of stigma and discrimination , built with people and not just for people.
