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Experience of stigma in private life of relatives of people diagnosed with schizophrenia in the Republic of Belarus

Abstract

Purpose

Family stigma constitutes a major problem in schizophrenia worldwide. Data on first-hand experience of stigma in families is necessary for planning and implementing interventions to reduce its burden. The aim of the study was to investigate the experience of stigma among relatives of persons with schizophrenia in Belarus.

Methods

Qualitative research methods, such as the thematic analysis of in-depth semi-structured interviews with 20 relatives of people diagnosed with schizophrenia, were used. Experience of discrimination, strategies used to cope with it, and requests for interventions were investigated.

Results

The most salient themes in experience of stigma in the private domain of life elicited in the narratives included anticipated stigma and dissolution of families. The experience of stigma was associated with burdensome feelings of guilt, tiredness and loneliness, together with fear and anxiety due to uncertainty in the future and sorrow because of frustrated hopes in past. Analysis of the strategies used to overcome the difficulties revealed concealment and “life behind closed doors”, avoidance of the rest of the family, taking full responsibility and sacrificing one’s personal life.

Conclusion

To reduce the burden of stigma in the private life of the family members of people living with schizophrenia in Belarus, important steps should be taken to promote the empowerment of families including: reforming mental health services; provision of better access to information; family support services, community care; development of family organisations; assistance in communication, re-socialisation and independent living for people diagnosed with schizophrenia.

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Acknowledgments

The work was partially supported by the Association for the Improvement of Mental Health Programmes (Geneva, Switzerland) and National Institute of Mental Health (Prague, Czech Republic) Grant Number CZ.1.05/2.1.00/03.0078, financed by the European Regional Development Fund. Additional assistance was provided within the International diploma in Mental Health Law and Human Rights (Pune, India) and Dr. Itzhak Levav. Local psychiatrists (Budnik T.A., Kravcova O.I., Murin A.Ja., Yankouskaya A.H.) in Belarus assisted with recruitment of respondents.

Author information

Correspondence to D. Krupchanka.

Ethics declarations

Conflict of interest

Authors have no interests to declare.

Appendices

Appendix 1

Topic guide for interviewers

  • Social and personal life (friends, neighbours, leisure, holiday, shopping, religious and cultural life);

  • Life within a family (attitude with people living with schizophrenia, relationship with other family members, changes in family after diagnosis, support and conflicts inside of family);

  • Feelings associated with being relative of people living with schizophrenia;

  • First experience of hearing diagnosis;

  • Education and employment (barriers, deteriorations);

  • Finance (problems, income influence, access to loans, welfare payment);

  • Experience of contacting both mental and physical health care system (treatment, hospitalization, contact with psychiatrists and other doctors);

  • Accommodation issues (deterioration, general conditions, access to basic needs);

  • Legal issues, contacts with police (attitude of police, experience of detention, access to mental health care);

  • Ways to cope with raised challenges;

  • Requests of interventions to reduce burden and improve the situation.

Appendix 2

List of identified topics of stigmatization experience, coping and intervention requests of family members of people living with schizophrenia

Experience of stigma and discrimination of relatives of people diagnosed with schizophrenia
 Challenges in the private domain
  Attitude within close environment (suspicions and apprehension of stigma)
  Life within a family (“broken family”)
 Subjective burden
  Feelings of guilt, sinfulness, fear and anxiety, hopelessness, sorrow, shame, overload and depression
  Stressful first episode of disorder
 Challenges in the public domain
  Associated with mental health care
   Difficulties in contacting mental health professionals and their attitude towards PLS
   Lack of alternatives to hospital treatment
   During hospital treatment of PLS (long travelling distances, lack of time and space when visiting, difficulties in contacts with medical staff)
   Absence of alternatives to long-term residential care facilities
   Difficulties getting appropriate information (poor contact with medical specialists; inconsistency of information; lack of information during the initial stage of disorder)
  Associated with employment of PLS
  Associated with contacting police
Strategies that FMs use to cope with stigma
 In the private domain
  Concealment (“live behind closed doors”, “normality in the eyes of others”)
  Avoidance of the rest of the family
  Taking full responsibility and sacrificing one’s personal life
 In the public domain
  Humility and passive acceptance
  Self-reliance
  Emotional containment during crises
Intervention requests
 In the private domain
  Information and education
  Assistance in patient’s life (communication with peers)
 In the public domain
  Passivity in expression and scepticism in expectations
  Changes in mental health care service
   Alternatives to hospital treatment of PLS
   Alternatives to psychopharmacological interventions
   Alternatives to long-term care facilities and independent living of PLS
  Assistance in patient’s life
   Communication with peers
   Better legal defence
   Assistance in employment

PLS people living with schizophrenia, FMs family members

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Krupchanka, D., Kruk, N., Murray, J. et al. Experience of stigma in private life of relatives of people diagnosed with schizophrenia in the Republic of Belarus. Soc Psychiatry Psychiatr Epidemiol 51, 757–765 (2016). https://doi.org/10.1007/s00127-016-1190-y

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Keywords

  • Family studies
  • Courtesy stigma
  • Qualitative approach