A nested study evaluating the impact of community care on experiences of stigma and discrimination of people with schizophrenia and their families
Background and study outline
The stigma attached to mental illness contributes greatly to the burden of mental disorders and is a major barrier to recovery. Schizophrenia carries a particularly great stigma, which often affects those with the illness as well as their healthy family members.
     This study – which is a part of the Community care for People with Schizophrenia in India (COPSI) project (see above)- seeks to describe the experiences of stigma and discrimination of people with schizophrenia and their caregivers, and to evaluate the impact of Collaborative Community Based Care (CCBC) on these experiences.
Participants in the COPSI Study will be asked about their experiences of stigma and discrimination both with the help of questionnaires and with in-depth-interviews.
    In-depth-interviews will be carried out with some of the patients and caregivers participating and will serve to learn in more detail about their experience of the illness and the impact of stigma on their lives. Approximately twelve patient-caregiver pairs will be interviewed in Goa, and another twelve pairs in each of the partner sites of the COPSI trial (Satara and Chennai).
Interviews are to be conducted at two time-points during the study; at Baseline (i.e. before any intervention is received by the participating families) and after a follow-up period of twelve months to evaluate the impact of Collaborative Community Based Care (CCBC)
Starting in September 2008, the study design and interview guides for the qualitative sub-study were developed. Several coordination visits were carried out to the COPSI trial partners at Chennai (SCARF) and Satara (Parivartan and Nirmitee) to set up qualitative teams locally.
In June 2009, a workshop on qualitative research methods was held at Sangath. Qualitative researchers from all three COPSI project sites attended and participated in lectures and practical exercises. A follow-up workshop on qualitative analysis was held in June 2010.
    The project has completed baseline data collection and is at present in the stage of endline data collection. Interview data is being transcribed, translated and analysed on an ongoing basis and we have completed 9 pairs of follow-up interviews in all the 3 sites. The experiences so far with the baseline data indicated that many people affected by schizophrenia speak openly about their experiences of living with this mental disorder, describing a variety of manifestations of stigma and discrimination in their everyday lives.
We anticipate that the findings will contribute to the aims of the overall COPSI project and add to the very limited evidence on effective interventions to reduce stigma and discrimination for people with severe mental disorders in developing countries.