PSYchosis MAPping in kwaZulu-Natal (PSYMAP-ZN)

PSYMAP-ZN is a collaborative 3-year study of psychotic illness in South Africa between the University of KwaZulu-Natal and the University of Exeter. Building on a very successful pilot study in the same region, we aim to produce new evidence that will help to answer some of the following questions:

- How common is psychosis in this population?
- What individual factors, and especially what socioeconomic and environmental factors, increase a person's risk for psychosis in this context?
- How do these individual and environmental risk factors impact the illness itself?
- How do people with psychosis and their families and caregivers seek help in this community and what role do informal providers such as traditional health practitioners play in this pathway to care?

Importantly, we are asking these questions because there is very little research evidence on psychosis from low- and middle-income countries, especially within Sub-Saharan Africa. Also, we know that formal health and mental health services for people with severe mental disorders such as psychosis are generally inadequate and often inaccessible within this under-resourced region. We also know that people with psychotic symptoms living in especially rural and remote areas, where mental health expertise is often unavailable, very often consult traditional health practitioners seeking help and care. Long delays in accessing appropriate and effective care are detrimental to psychotic illness and are associated with more severe symptoms, more difficult recovery, greater frequency of relapses, and poorer long-term social and occupational outcomes. We will use a multi-disciplinary approach that includes expertise from disciplines of mental health and psychiatry, public health, health geography (and the use of geographical information systems), anthropology and cultural studies; and will work together with service users, caregivers and important community stakeholders such as traditional health practitioners. Our findings will broaden our understanding of: the frequency of and risk factors for this severe form of mental illness; how the environment impacts the illness; and how sufferers and their caregivers seek help. Understanding these key issues will provide a good basis for designing appropriate services and treatments to meet the needs of patients and carers. Some of the benefits we envisage include:

- Enabling service providers, planners and policy makers to quantify the extent of psychotic illness in this population and plan sufficient services to meet the need
- Providing a better understanding of individual, socioeconomic and environmental factors that increase risk for psychosis and impact negatively on the illness itself, so that appropriate prevention, screening and early detection and treatment programmes can be planned
- Improving knowledge about people's beliefs, preferences and behaviours in seeking help for their symptoms of illness; and working out how formal health services can best work together with community providers such as traditional health practitioners to improve access to early and effective care.

South Africa is a middle-income country with multiple social, economic and developmental needs. Mental health services for people with severe mental illnesses such as psychosis are inadequate and often inaccessible. Delays in accessing treatments (or not receiving treatment at all) result in increased severity and disability due to the illness. This prevents patients from being economically active, places significant burden on their families and caregivers who often cannot work either due to this burden, and adds considerably to health and social care costs. By addressing the important issues we have outlined above, PSYMAP-ZN will produce important information that can be used to improve the lives of suffers and their families and to reduce the human, social and economic burden associated with psychotic disorders.

PSYMAP-ZN is a 3-year epidemiological study of psychosis in South Africa and a collaboration between the Universities of KwaZulu-Natal and Exeter. Building on our successful INCET pilot study in the same region, we aim to identify all incident cases of psychosis within Msunduzi Municipality in KwaZulu-Natal Province over a 2-year period. In our pilot study we developed an effective strategy to collaborate with traditional health practitioners in case identification and we will further develop this approach. We will recruit 240 cases and 240 age and gender matched controls into a case-control study and evaluate psychopathology, individual and neighbourhood level factors associated with psychosis risk and presentation. We will utilise innovative spatial epidemiological (GIS) methods to characterise the socioeconomic and physical environment and map the distribution of incident cases across varying neighbourhoods within the catchment area (e.g. varying by urban/rural, population density, socioeconomic status, levels of crime, and amount of green space). We will use novel virtual reality experiments in a subsample of 75 cases and 75 controls to evaluate symptom and physiological responses to simulated virtual environments - to determine whether this method can aid diagnosis as well as our understanding of risk factors (such as history of childhood trauma). Finally, we will explore the help-seeking behaviours and pathways to care of people with psychosis and their carers using quantitative, spatial and qualitative methods. Our findings will contribute substantially to the very limited evidence-base on psychosis epidemiology, the impact of the environment on psychosis, and help-seeking behaviours and pathways to care of people with psychosis in LMIC settings. In particular our findings will inform the development of appropriate and effective services for this vulnerable population and produce a model for successful collaboration between formal and informal providers.

PSYMAP-ZN aims to make seminal contributions to understanding the heterogeneity in psychotic disorders and to informing development of locally appropriate, accessible and effective services in LMIC settings. Our findings will benefit academics, researchers, policy makers, formal and informal providers, families, and users. Our strategies to impact the scientific community are set out in our Academic Beneficiaries Plan. Here we focus on impacts on providers, other stakeholders, patients and their families.
Patients, families and caregivers In LMIC settings, most people with psychosis and their carers experience barriers accessing health care with long delays resulting in deterioration in illness, emergence of comorbidities, loss of social and occupational function, societal stigma and often early death. We aim to generate knowledge and foster integration between formal and informal providers that will improve access to care, early detection and the quality, effectiveness and acceptability of interventions for patients. By engaging patients/carers from the outset, we will generate better understanding of their beliefs, help-seeking behaviours, concerns and needs and will strengthen user agency and participation in development of the services they use. We aim to improve the transfer and embedding of knowledge that will strengthen user-led advocacy for this vulnerable group.
Health services development There is little epidemiological evidence on psychosis in this setting. We will provide incidence data assisting health service planners to quantify the problem and develop services to meet the need. We will also improve understanding of how key public health and socioeconomic factors (eg HIV, cannabis, poverty, inequality, urban migration, trauma, traditional beliefs and healing practices) impact risk for and presentation of psychosis. This will inform efforts to improve public mental health programmes including prevention, screening and early detection, ultimately improving health outcomes. Our focus on help-seeking and pathways to care will inform efforts to improve access, reduce delays and provide early intervention services. Notably we will advance the success of our pilot work in developing a model for positive collaboration between formal health services and traditional health practitioners. This is recognised globally and within South Africa as a priority objective (eg Traditional Health Practitioners Act 2007) but efforts to integrate THPs into formal services have proved difficult. Our research will inform this process. We will also generate better knowledge and understanding of cultural beliefs and practices related to psychosis that clinicians can use to improve their skills in providing empathic, culturally sensitive and user-informed treatment to patients and their families.
Intersectoral skills and policy development Meeting the many needs of patients with psychosis and their carers requires the commitment of stakeholders across health, social, labour, education, criminal justice, traditional authority and other sectors. We will improve knowledge, skills and capabilities in these sectors, from providers (e.g. teachers, police, NGOs) to policy-makers. Intersectoral collaboration is an explicit policy of the SA government and we will provide evidence supporting this agenda and informing better decision-making.
Economic and social development We will contribute to saving on health and social care costs by informing development of appropriate services. Improving early detection of psychosis will reduce the disability associated with chronicity, resulting in: reduced health and social care costs associated with chronic illness; improved recovery and return to economic productivity in patients; and relief of caregiver burden, allowing them to be economically productive. Finally, we will promote the reduction of social inequities related to mental illness and the greater inclusion of sufferers in society.