What is mental health care in low-resource, remote, or rural spaces? In conversations with several experts, including patients, caregivers, and community health workers in the rural villages surrounding Kabale, Uganda, they shared the following responses: transportation, basic needs including food and housing, school fees, medication access, employment opportunities, financial support for business and skill development, social support, family education, emergency services, psychoeducation for patients and families, community mental health education, community and political advocacy, consistent access to services/freedom from worry about and actual disruptions in services, individual therapy, and support groups.
The next question was how can all of this be provided by the three health workers that staff the mental health outreach program for this district? In a clinic that serves approximately 300 mental health patients per month, the answer is it cannot. Patients walk to the outreach clinic locations for multiple hours each way to receive monthly services, health workers approach their role with compassion and respect for those carrying this burden, but it will never be enough to make sustainable change in the mental health of the region alone.
This is not just a challenge in this region of Kabale, but a challenge I faced daily in my work as a clinical social worker in community mental health in New Mexico. It was also a problem in my mental health roles in Texas, and Washington, DC, and Missouri. The definition of mental health is often too narrow and approached in such a fragmentary fashion that improvement in one area is offset by declines in others. For example, increased stabilization of patients in the Kabale clinics due to access to medication is offset by the lack of staffing to monitor side effects and support adherence, leading to devastating relapses in symptoms. In New Mexico, one patient stabilizing on medication for his schizophrenia, then sought social engagement without adequate support and was introduced to marijuana use by neighbors, leading to a loss of stability and suicidal thoughts.
Mental health care is much more than medical care. Medication is a necessary component for many individuals but for there to be lasting improvement in mental health globally, there are many equally important aspects of mental health that should not be seen as secondary by health systems.. The social and political factors perpetuating mental illness are significant and have changed little over time.[i] A first step in improving mental health care is organizing the massive population of individuals directly invested in mental health, including those with a mental illness, their families and loved ones, and those serving this population. One thing I have learned and witnessed over my career is the knowledge, passion, and dedication of this group of people to persist despite the daily challenges a broken mental healthcare system presents them. Community organizing to support leadership development within this population needs to be the rule and not the exception. There are many examples of beautifully successful innovations in mental healthcare based on this – and we need more.
Leadership in mental health needs to reflect this diverse population. The biomedical perspective on mental health is valuable but limited. Leadership with expertise in the many mental health care needs listed by those in Kabale need to be designing mental healthcare. There is a burden felt by all those working for the mental health of themselves, their families, and their communities that cannot be carried in isolation. Incorporating community organizing skills to address mental health care may seem outside of the traditional symptom management approach and that is important. In Kabale, there was a three-year gap in the clinic services when political factors created a barrier. This mental health clinic was re-instated following a letter writing campaign from the villages to the District Health Office. The community demanded the services they needed, and they were listened to. It is time to demand the mental health care that communities know they need and to support them with the skills to be heard and lead this change.
[i] World Health Organization. (2021, October 8). Who report highlights global shortfall in investment in Mental Health. World Health Organization. Retrieved August 14, 2022, from https://www.who.int/news/item/08-10-2021-who-report-highlights-global-shortfall-in-investment-in-mental-health
Erin McGuinness is a DrPH student and a licensed Clinical Social Worker (LCSW) who has devoted her career to addressing community mental health issues, with a particular emphasis on trauma and suicidality.
