Social inclusion in global mental health contexts: how can we do more for what matters most?

Global mental health seeks to address inequities in mental health, particularly in low- and middle-income countries (LMICs). Its goals have evolved over time from an initial focus on expanding access to mental health care to improving the mental health of populations, and re-imagined in terms of the who, what and how of achieving better mental health. Alongside this, there has been a vital focus on addressing mental health-related human rights abuses, stigma and discrimination. However, these efforts have not adequately addressed what commonly matters most to people with mental health conditions and their families, i.e. social inclusion. In responding to Henderson et al’s timely and important paper1, I draw on learning about social inclusion in an Ethiopian context, where I have lived and worked for many years, and consider the evidence and actions needed to re-orient ourselves to the priority of social inclusion in diverse LMICs. Social inclusion, described in Henderson et al’s paper as “being able to participate in activities valued within one’s community or wider society as one would wish”, is at the heart of what members of a rural Ethiopian community described as “restoring the person’s life”2. In that setting, social inclusion encompasses being enabled and allowed to carry out valued social roles, such as participation in the rich network of community groupings (e.g., burial societies, savings groups) and major events of life (e.g., visiting postnatal women, the sick, the bereaved); contributing labour and care to the community and family, and being trusted in collaborative farming or work activities. The consequences of not being socially included can be economically dire, as subsistence farming activities and informal trading rest on mutual reciprocity. Among households of a person with a severe mental health condition, 33% experienced severe food insecurity, compared to 16% of households in the general population3. Recovery journeys are heavily constrained by lack of economic and social inclusion. Women with severe mental health conditions face intersecting disadvantages that work against social inclusion. Gender norms combine with stigmatizing attitudes about people with severe mental illness to constrain women’s control over their sexual and reproductive health, and label women as unmarriageable and unsuitable for motherhood. The disadvantages for both men and women emanating from lack of social inclusion are propagated within families of the person and across generations, resulting in lost opportunities for relationships, education and economic betterment, poorer health and premature mortality4. This illustration from Ethiopia demonstrates the contextually embedded nature of social inclusion and its profound ramifications for the dignity of people with severe mental health conditions and their families. Further work is needed to understand how social inclusion to support recovery is conceptualized across non-Western settings. The current lack of conceptual clarity presents an immediate challenge for the measurement of social inclusion. None of the existing measures are fit for purpose5. Without agreed core concepts allowing for the development of contextualized measures of social inclusion, we have little sense of whether interventions are achieving what matters most for people with mental health conditions and their families. In a recent systematic review of interventions for people with psychosis in LMICs, which had social inclusion as the primary outcome of interest, only six out of 316 evaluations (4%) reported social inclusion as an outcome, operationalized as participation in social life, economic life (including employment) or political life6. Families play a pivotal role in supporting recovery of people with severe mental health conditions in many LMICs where welfare support is minimal. Therefore, measurement of valued aspects of inclusion in family life is likely to be important. Measurement of social inclusion in terms of organizations and services may be possible. For example, people with severe mental health conditions have been identified as a vulnerable group to be prioritized for community development efforts, and yet frequently are “left behind”. The extent to which aid and development programmes include people with these conditions would be a valuable indicator of inclusion that could be readily operationalized in many contexts. Indicators of parity of access to quality physical and mental health services also reflect a key aspect of social inclusion that is essential for addressing inequities in health and survival. What, then, are the implications for how we conceptualize and prioritize interventions for people with severe mental health conditions in diverse LMIC contexts? Interventions to achieve social inclusion necessarily go beyond individual-focused mental health treatments and should consider what aspects of inclusion are valued by the persons themselves, while delicately balancing the inclusion needs of families. Henderson et al highlight the apparent lack of relationship between availability of mental health services and employment inclusion for people with severe mental health conditions in China and India1. However, for most people with these conditions, access to biomedical treatment brings benefits that go beyond symptom control. Models of locally accessible mental health care integrated within primary care in Ethiopia7 led to reduced food insecurity and reduced instances of restraint, and catalyzed community responses that increased inclusion – for example, of people with severe mental health conditions who were homeless. Nonetheless, this model did not enable “restoration of the person’s life” for many, due to inadequacies in mental health care options (e.g., high burden of side effects from first-generation antipsychotics, lack of family level interventions), an inability to address economic and attitudinal barriers to accessing care, and the absence of targeted interventions to support economic and community inclusion. Interventions that directly target poverty in households of a person with a severe mental health condition have potential to promote social inclusion through multiple pathways, including improved ability to access mental health care and enhanced opportunities to participate in the reciprocal social obligations that underpin full participation in society and economic life. At present, evidence on the impacts of cash transfers or other forms of economic interventions for people with severe mental illness is lacking. While many middle-income countries have national social protection programmes for people with disabilities, individuals with severe mental illness are often systematically excluded, while such programmes are often lacking in low-income countries, demanding focused advocacy. Rights-based approaches grounded in social justice, such as community-based rehabilitation or inclusive development, assume that enabling factors for inclusion require changes in communities. A trial of community-based rehabilitation in a rural Ethiopian setting sought to engage community leaders and advocate for opportunities for people with severe mental health conditions to be involved in work and community activities alongside engagement in mental health care, demonstrating improvements in functioning, although not employment8. Empowerment and involvement of people with lived experience in advocating for the support and inclusion that they value and prioritize is a key approach. In Ethiopia, empowerment activities and participatory action research with people with severe mental health conditions led both to subjective reports of feeling socially valued as well as successful mobilization of community support that facilitated inclusion9. Advocacy efforts for social inclusion may be enhanced by social contact interventions involving people with severe mental illness. When these people present their life experiences and recovery journeys to leaders, planners and policy makers, those who hold power may be motivated to change structures and influence attitudes to enable inclusion. Efforts to achieve social inclusion for people with severe mental health conditions in diverse LMICs require a reorientation to what matters most to these people in their family and community, the services they interact with, and the wider societal and political context. Ensuring that lived experience voices drive this process is essential.