Co-creative research to transform mental health in women
Motherhood is a challenging experience for any woman, but for those living with a mental health condition, the challenges can be even greater. Although the birth rate among women with a mental health diagnosis is similar to that of the general population , evidence suggests that mothers with mental health conditions have a higher risk of relapse and complications.
As a result, these mothers often face greater difficulties in fulfilling their maternal role and are up to eight times more likely to lose custody of their children compared to the general population. This reality not only impacts them but also their children. Evidence suggests that having a parent with a mental disorder increases the likelihood of experiencing mental health problems later in life by up to 50% . Often, the parents' diagnosis is kept secret to protect the children. However, this lack of information leads to increased fear and insecurity among the children. Furthermore, many assume caregiving responsibilities at an early age, exhibiting precocious maturity.
Psychosis and motherhood: overcoming the challenges of adolescence
In recent years, research has evolved from an individualistic perspective to a broader one, considering relational, economic, and environmental factors when addressing mothers' mental health problems. Evidence has shown that being female is a risk factor for raising children with severe mental illness. Among the main obstacles these women face are:
- The stigma and fear of being judged for their diagnosis limits their access to support networks and professionals.
- Social pressures and self-imposed demands to conform to conventional models of motherhood.
- The lack of socioeconomic support , since most raise their children alone and face difficulties related to access to education and employment.
Despite all these challenges, many of them successfully fulfill their role as mothers . However, it is essential to make this reality visible so that both society and professionals become aware and take responsibility, ensuring both their well-being and that of their children.
Motherhood is a challenging experience for any woman, but for those living with a mental disorder, the challenges can be even greater.
The lack of awareness and training among professional teams , coupled with the reluctance of these mothers due to fear of criticism and loss of custody, makes it difficult to determine the prevalence of motherhood among women with mental disorders. As a result, their needs go unmet , limiting the development of interventions that provide adequate support. In contrast, countries like Norway, Sweden, and Australia have implemented policies requiring adult mental health services to register the presence of children to address family needs. Without such measures, exclusion is perpetuated, and access to essential resources for these families is hindered.
The involvement of people with lived experience of mental health issues to further research
Mental health research has evolved toward a more participatory and co-creative approach, where people with lived experience play an active role in generating knowledge. This approach recognizes not only the importance of the expert knowledge of the research team or mental and social health professionals, but also the value of the lived experiences of those who have lived through these situations.
The involvement of people with firsthand experience in the research process is key to ensuring that the results are valid and applicable to real-world situations . Co-creation has been shown to:
- Improve transparency
- It facilitates the implementation of effective, sustainable and accepted programs , aligned with the real needs of the population.
- Reduce stigma and inequalities in mental health.
- It improves social perception of the ability of people with mental disorders to contribute to society.
- It strengthens the relationship between communities, professionals, and institutions .
From a gender perspective , co-creation allows us to address structural inequalities and design more inclusive and accessible interventions. Integrating the voices of women with experience in mental health and motherhood not only fosters a more empowering rather than paternalistic approach, but also breaks with the traditional view of people with mental disorders as mere recipients of support.
In short, co-creation in mental health and maternity research is not only an innovative methodology, but also a key tool for social change. It allows us to move towards fairer, more equitable care models that are aligned with the real needs of those experiencing these situations.
Success story of a co-created project implementation: Co-Elna
Along these lines, researchers from the Federació Salut Mental Catalunya and the Parc Sanitari Sant Joan de Déu , together with a committee of experts made up of women with lived experience of mental health conditions, have launched the Co-Elna project , funded by the Fundació “La Caixa” and supported by the TECSAM network. This initiative aims to raise awareness of the realities faced by women diagnosed with mental health conditions and improve mental health and maternity care.
The name Co-Elna has a symbolic meaning:
- "Co" represents the co-creation process of the project.
- "Elna" was named in honor of the Elna Maternity Hospital, founded by Elisabeth Eidenbenz, a Swiss teacher and activist, which welcomed hundreds of pregnant Spanish women exiled in France during the Spanish Civil War.
Unlike most studies conducted to date, where co-creation in mental health is superficial or low-cost, and first-hand experience is only available at specific points, in Co-Elna the participation of the co-creators is present in all phases of the project. For example:
- Research design
- Design of strategies for disseminating the study and its results
- The recruitment of participants
- The review of assessment instruments
- The development of focus groups.
- Ethical advice to protect the rights of the participants.
This ensures genuine co-creation, with shared participation, guaranteeing continuous feedback and research tailored to the real needs and concerns of these women.
Co-Elna's specific objectives are to determine the prevalence and sociodemographic profile of women with mental disorders in relation to motherhood, as well as to assess the impact of motherhood on their mental health, well-being, and quality of life. Furthermore, it seeks to identify the main challenges and needs of these families in order to develop more appropriate interventions.
Thus, we hope this project will address current limitations in research in Spain from a gender and co-creation perspective . Its purpose is to improve awareness and intervention with a community-based approach, promoting the well-being of both mothers and their children, a population that has been invisible, insufficiently studied, and under-supported until now.
Participate in Co-Elna!
The first phase of the study is already underway. If you are a woman, over 18, and have a mental health diagnosis, your voice matters! We invite you to participate in a project survey (whether you are a mother or not, your opinion counts). In return, you will receive information about mental health resources.
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