1. Psychotic disorders in an African setting: Incidence, early course, and treatment pathways (FEP-INCET)
ES Susser,1 JK Burns,2 S Mtshemla,2 E Makhatini,2 JN Baumgartner,1,3 I Susser,4 I McKeague,1 G Davis,1 L Labys,2 MA Tomita,2 L Myer,5 W Veling,6 WH Hoek,6 G Thornicroft7
1Columbia University, NY 2University of KwaZulu-Natal, Durban 3FHI 360 4CUNY, NY, 5University of Cape Town, 6Parnassia Institute, The Hague, 7Institute of Psychiatry, London
OUTCOMES
METHODS
Adaptation of instruments: We translated into isiZulu, adapted and piloted the following instruments for use in the FEP-INCET Study:
Community Assessment of Psychic Experiences (CAPE)
Schedule for Clinical Assessment in Psychiatry (SCAN)
Positive and Negative Syndrome Scale (PANSS)
WHO Disability Assessment Schedule II (WHODAS II)
Camberwell Assessment of Needs (CAN)
WHO-ASSIST
WHO Encounter
Lehman Quality of Life Interview
Key informant interviews & focus groups: We conducted 41 key informant interviews and 7 focus groups (comprising 6-8 people per group). KIIs and FGs comprised key stakeholders including: traditional healers; nurses, tribal leaders; community health workers; teachers; and religious leaders. These semi-structured interviews focused on knowledge, attitudes and practices with regard to mental illness in the community, causal beliefs for symptoms of mental illness, and pathways and barriers to care. Case examples were discussed.
All interviews were recorded, translated and transcribed and analysed using ATLAS ti.
Assessments for psychosis: Traditional healers (50) from throughout Vulindlela were recruited and trained in the recognition of psychotic symptoms. They were requested to refer to us any clients who had sought their help complaining of a recent onset of psychotic-like symptoms. They were requested to indicate their opinion as to the likelihood of psychosis, scoring 1 for ‘no psychosis’, 2 for ‘maybe psychosis’ and 3 for ‘definitely psychosis’. In addition, nurses at 8 PHC clinics in Vulindlela were requested to refer individuals presenting with a recent onset of psychotic symptoms.
We aimed to recruit 200 individuals over a period of 6 months and assess them with the CAPE, ASSIST and SCAN interview to derive a clinical diagnosis. Trained psychology students administered the screening instruments while psychiatrists administered the SCAN.
OBJECTIVES
This R21 project proposes to pilot and build capacity for a subsequent R01 study that will investigate the incidence rate, early course, and treatment pathways (INCET) of first episode psychotic disorders (FEP) among treatment seeking individuals in Vulindlela, KwaZulu-Natal, Republic of South Africa.
The FEP-INCET study will be the first to derive incidence rates for FEP in an African setting.
The specific aims of this preparatory study are:
To develop a method to screen for FEP that is feasible and culturally sensitive.
To develop a protocol for assessment and follow-up of FEP that is feasible and culturally sensitive.
To build a research team in KZN which can apply these methods in the FEP-INCET study
Community consultation: Consultation was conducted with the local tribal chief, the traditional council, local traditional healers’ organisation, health and education authorities, primary health care nursing staff, local religious leaders and other community stakeholders. A memorandum of understanding was signed with the local chief and traditional council and a Community Research Advisory Board was established.
Ethnography: We conducted an ethnographic study of the behavior and perspectives of local people with respect to pathways to care for mental illness. We used participant observation in community groups, households and public settings. Individuals were recruited through informal networks, traditional healers and tribal leadership, psychiatric outreach nurses and community health workers as well as at public events. A researcher resided with a traditional healer for several days observing and recording her practices.
A strong local research team was recruited and trained in research and ethics, administration of instruments and data management, providing a solid platform for the FEP-INCET Study.
Positive collaborative relationships were established in Vulindlela with the Chief, tribal council, traditional healers, clinic nurses, and other key community gatekeepers and stakeholders.
We gained important insights into local beliefs, knowledge and practices in the region related to individuals with mental health symptoms, especially psychotic-like symptoms.
We translated, adapted and piloted instruments to be used in the FEP-INCET study.
Qualitative work allowed us to map in detail the complex pathways to care for people with psychotic symptoms living in the region. An important observation is the extreme lack of access to formal mental health care and treatment for such people; and their significant reliance on traditional healers for help.
Initial analysis of CAPE and SCAN data suggests that traditional healers are able to identify psychotic symptoms and are keen collaborative partners in improving pathways to care for community-dwelling individuals seeking help for psychotic-like complaints.
Several publications are in preparation and our intention is to submit an application for an R01 for the FEP-INCET study during 2014.
STUDY SITE: VULINDLELA
Rural community, 100 miles west of Durban
Population:
Poor with 45% unemployment rate
30% HIV prevalence
Traditional authority
9 PHC clinics
>100 traditional healers
CAPRISA research site
Funding source: This study was funded through an NIMH grant: 1R21MH