Abstract
BackgroundDelay in treatment seeking in psychoses is not only influenced by stigma, societal attitudes, unawareness, under-diagnosis but also is coloured by the socio-cultural background of the patient. Finding out these reasons for delay in treatment can help both the patient and the family members by reducing the morbidity & burden associated with untreated psychosis.MethodsThis is a hospital based cross-sectional study, conducted Raipur. Included are purposive sample of 25 family members & patients with a diagnosis of schizophrenia, schizoaffective disorder, or psychotic disorder-not otherwise specified - using the Mini International Neuropsychiatric Interview-Plus version, aged 18–60 years, who are able to understand and speak Hindi, and in regular contact with the patient. DUP is defined as the number of months from the onset of positive psychotic symptoms until start of proper treatment. Semi-structured interview was conducted by using open ended questions to assess the factors responsible for treatment delay and verbatims were recorded.Qualitative analysisWe used content analysis for the purpose of this study. Each investigator generated separate categories and themes after reading the transcripts word by word. Theme generation was continued till theoretical saturation emerged and. Categories and themes identified by both the investigators in common were used in the results as it would increase their validity.Results1. Socio-demographic profile64% of patients were diagnosed with Schizophrenia and the rest were diagnosed with Psychosis NOS. Mean total duration of untreated psychosis was 15 months. Relation of family members with the patient was like parents (48%), spouse (24%), siblings (12%), children (8%), uncle/aunt (4%), grand-parents (4%).2. Results of qualitative analysisBased upon the content analysis technique used, we have generated certain categories of factors responsible for treatment delay and generated themes in each category.A. Illness related factorsa. Unawareness of illnessb. Explanatory models of illnessi. Supernatural causation of illnessii. Biological causation of illnessc. Stigma associated with illnessB. Patient related factorsa. Underlying pre-morbid personalityb. Symptoms at the onsetc. Onset along with life eventsd. Poor insight/uncooperative patiente. Impaired functioningC. Family related factorsa. Shared societal beliefsb. Cultural constraintsc. Lack of support from significant others or poor social supportD. Treatment related factorsa. Poor knowledge of general physicians about psychiatric disorders and poor referralb. Misconceptions about the effects of medicationE. Othersa. Financial constraintsDiscussionThe most common cause of delay is unawareness about the illness apart from the supernatural causation. To our knowledge this is the first study where we found that if the patient’s personality presents in an exaggerated way, or patient’s psychopathology is in line with the socio-cultural background, it might lead to delay. Though the findings about patient’s poor insight, uncooperativeness, negative symptoms, absence of violence, financial burden, stigma, lack of social support was proved by many studies, preserved functioning is our novel finding.Though these themes seem to be separate, they are interdependent and interact in a complex way leading to the delay in treatment seeking. Interventions focused at each and every step need to be devised in further studies in order to overcome these barriers.
Highlights
The Recovery After Initial Schizophrenia Episode-Early Treatment Program (RAISE-ETP) study was a landmark investigation whose positive results led to increased funding and support to build first episode psychosis programs across the US
The research here presents data from a survey focusing on providing feedback from the first episode psychosis programs in the US implementing NAVIGATE, the CSC program utilized in RAISE-ETP
An online survey is being conducted to assess the implementation of NAVIGATE programs in the US and evaluate the procedures that the program director utilizes to identify and enroll NAVIGATE participants in services
Summary
Background: The Recovery After Initial Schizophrenia Episode-Early Treatment Program (RAISE-ETP) study was a landmark investigation whose positive results led to increased funding and support to build first episode psychosis programs across the US. Every state in the country received dedicated funding to implement a coordinated specialty care (CSC) program designed to identify and treat persons with first episode psychosis within the context of the nation’s multi-payer health system. The research here presents data from a survey focusing on providing feedback from the first episode psychosis programs in the US implementing NAVIGATE, the CSC program utilized in RAISE-ETP.
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