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Experiences of stigma and discrimination faced by family caregivers of people with schizophrenia in India

Author

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  • Koschorke, Mirja
  • Padmavati, R.
  • Kumar, Shuba
  • Cohen, Alex
  • Weiss, Helen A.
  • Chatterjee, Sudipto
  • Pereira, Jesina
  • Naik, Smita
  • John, Sujit
  • Dabholkar, Hamid
  • Balaji, Madhumitha
  • Chavan, Animish
  • Varghese, Mathew
  • Thara, R.
  • Patel, Vikram
  • Thornicroft, Graham

Abstract

Stigma associated with schizophrenia significantly affects family caregivers, yet few studies have examined the nature and determinants of family stigma and its relationship to their knowledge about the condition. This paper describes the experiences and determinants of stigma reported by the primary caregivers of people living with schizophrenia (PLS) in India. The study used mixed methods and was nested in a randomised controlled trial of community care for people with schizophrenia. Between November 2009 and October 2010, data on caregiver stigma and functional outcomes were collected from a sample of 282 PLS–caregiver dyads. In addition, 36 in-depth-interviews were conducted with caregivers. Quantitative findings indicate that ‘high caregiver stigma’ was reported by a significant minority of caregivers (21%) and that many felt uncomfortable to disclose their family member's condition (45%). Caregiver stigma was independently associated with higher levels of positive symptoms of schizophrenia, higher levels of disability, younger PLS age, household education at secondary school level and research site. Knowledge about schizophrenia was not associated with caregiver stigma. Qualitative data illustrate the various ways in which stigma affected the lives of family caregivers and reveal relevant links between caregiver-stigma related themes (‘others finding out’, ‘negative reactions’ and ‘negative feelings and views about the self’) and other themes in the data.

Suggested Citation

  • Koschorke, Mirja & Padmavati, R. & Kumar, Shuba & Cohen, Alex & Weiss, Helen A. & Chatterjee, Sudipto & Pereira, Jesina & Naik, Smita & John, Sujit & Dabholkar, Hamid & Balaji, Madhumitha & Chavan, An, 2017. "Experiences of stigma and discrimination faced by family caregivers of people with schizophrenia in India," Social Science & Medicine, Elsevier, vol. 178(C), pages 66-77.
    • Handle: RePEc:eee:socmed:v:178:y:2017:i:c:p:66-77
    DOI: 10.1016/j.socscimed.2017.01.061
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    References listed on IDEAS

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    1. Yang, Lawrence Hsin & Kleinman, Arthur & Link, Bruce G. & Phelan, Jo C. & Lee, Sing & Good, Byron, 2007. "Culture and stigma: Adding moral experience to stigma theory," Social Science & Medicine, Elsevier, vol. 64(7), pages 1524-1535, April.
    2. R. Thara & T.N. Srinivasan, 2000. "How Stigmatising Is Schizophrenia in India?," International Journal of Social Psychiatry, , vol. 46(2), pages 135-141, June.
    3. Helen Charles & S.D. Manoranjitham & K.S. Jacob, 2007. "Stigma and Explanatory Models Among People With Schizophrenia and Their Relatives in Vellore, South India," International Journal of Social Psychiatry, , vol. 53(4), pages 325-332, July.
    4. Koschorke, Mirja & Padmavati, R. & Kumar, Shuba & Cohen, Alex & Weiss, Helen A. & Chatterjee, Sudipto & Pereira, Jesina & Naik, Smita & John, Sujit & Dabholkar, Hamid & Balaji, Madhumitha & Chavan, An, 2014. "Experiences of stigma and discrimination of people with schizophrenia in India," Social Science & Medicine, Elsevier, vol. 123(C), pages 149-159.
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    Cited by:

    1. Yu, Yu & Liu, Zi-Wei & Li, Tong-Xin & Li, Yi-Lu & Xiao, Shui-Yuan & Tebes, Jacob Kraemer, 2020. "Test of the stress process model of family caregivers of people living with schizophrenia in China," Social Science & Medicine, Elsevier, vol. 259(C).
    2. Erdinç Kalayci & İmran Uzunaslan & Şerif Uzunaslan, 2023. "Caregiver burden experiences of caregivers of patients with schizophrenia: A qualitative inquiry," International Journal of Social Psychiatry, , vol. 69(3), pages 543-550, May.
    3. Yeliz Karaçar & Kerime Bademli, 2022. "Relationship between perceived social support and self stigma in caregivers of patients with schizophrenia," International Journal of Social Psychiatry, , vol. 68(3), pages 670-680, May.
    4. Toshiyuki Marutani & Sotheara Chhim & Akihiro Nishio & Akiko Nosaki & Yasuko Fuse-Nagase, 2020. "Quality of life and its social determinants for patients with schizophrenia and family caregivers in Cambodia," PLOS ONE, Public Library of Science, vol. 15(3), pages 1-21, March.
    5. Bichitra Nanda Patra & Vaibhav Patil & Yatan Pal Singh Balhara & Sudhir K Khandelwal, 2022. "Self-stigma in patients with major depressive disorder: An exploratory study from India," International Journal of Social Psychiatry, , vol. 68(1), pages 147-154, February.
    6. Kerime Bademli & Neslihan Lök, 2020. "Feelings, thoughts and experiences of caregivers of patients with schizophrenia," International Journal of Social Psychiatry, , vol. 66(5), pages 452-459, August.
    7. Krupchanka, D. & Chrtková, D. & Vítková, M. & Munzel, D. & Čihařová, M. & Růžičková, T. & Winkler, P. & Janoušková, M. & Albanese, E. & Sartorius, N., 2018. "Experience of stigma and discrimination in families of persons with schizophrenia in the Czech Republic," Social Science & Medicine, Elsevier, vol. 212(C), pages 129-135.

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