Given the historical disempowerment and marginalization of people with mental disorders, user engagement in decision-making: Medical Anthropology Case Study, UO, UK

Given the historical disempowerment and marginalization of people with mental disorders, user engagement in decision-making is particularly important. In developed countries, user engagement has received attention at the service and strategic levels, but less so in developing countries. However, the capacity to make decisions and take responsibility for one’s care is a fundamental aspect of having a happy and fulfilling life in society, thus it is necessary for day-to-day existence. Additionally, making decisions and choices in life is significant and important for one’s well-being.

The WHO Framework for Meaningful Engagement of People Living with Noncommunicable diseases (NCDs) and Mental Health conditions (2022) is being developed to promote the meaningful engagement of individuals with lived experience to co-create and enhance related policies, programs, and services Through an increasing evidence base, the framework will help to increase understanding, knowledge, and action on meaningful engagement and other relevant participatory approaches. The Convention on the Rights of Persons with Disabilities, also known as the CPRD or Convention, adopted by the United Nations in 2006, has also sparked a lot of discussion on how to give people with disabilities the legal capacity to make decisions. This study will assess whether anything can be learned from the capability approach that was developed in relation to the decision-making of marginalized groups.

The capability approach developed by A. K. Sen (1992) is a useful framework as it assists in defining exclusion, its causes, and consequences from the “standpoint” vantage… Sen’s theory of capability views ability as a practical opportunity rather than the possession of a physical or mental ability. Functioning is what a person accomplishes, what he or she is capable to do or be. Disability in this context can be viewed as a deprivation of abilities or functioning brought on by the combination of a person’s traits and environment. To this purpose, the CRPD’s Article 12 ensures and affirms legal competence for people with disabilities as a human right.

Since the Malawian government has ratified and signed the CRPD, it is legally required to make sure that people with psychosis are given the assistance they need to exercise their legal capacity per Article 12, also known as supported decision-making. However, several other factors need to be considered in the context of Malawi. Culture and tradition in Malawi play a big role in the understanding of mental illness among community members and how decisions are made. Many people attribute psychosis to illicit drug abuse and supernatural forces such as spiritual possession, witchcraft, curse, and punishment for sins (Crabb, 2012).

As in other African countries, it is a condition presenting with socially disruptive behaviors that tend to be considered a mental illness. There is a high stigma and discrimination towards persons with psychosis in Malawi and Africa in general. The stigma comes due to a wide belief in supernatural forces that associate mental disorders with witchcraft, punishment, sin, and spiritual possession (Wright, 2020).

People with mental illnesses are also viewed as violent and dangerous and to be avoided. There are also additional barriers to seeking and accessing care by individuals, their families, and communities which include a lack of knowledge about mental health, belief in traditional and religious healing, geographical and financial barriers to accessing formal health services, and low family involvement in the care of people with psychosis due to the distance to tertiary institutions among many other barriers.

In Malawi, where seeking care is so important, people with psychosis also rely on the support of their families and communities. 97% of Malawian patients with psychosis are confirmed to include guardians in seeking care (Chile, 2017). The Mental Health Act of 1968 may allow people who are experiencing psychosis to seek medical care, but because it does not comply with the UNCRPD, it is silent and does not respect the participation of people who are experiencing psychosis in decision-making processes that affect their medical care. There is no literature yet on how Malawi’s decision-making procedures involving people with psychosis work within the current legal framework.