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Erschienen in: Social Psychiatry and Psychiatric Epidemiology 5/2016

12.02.2016 | Original Paper

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

verfasst von: D. Krupchanka, N. Kruk, J. Murray, S. Davey, N. Bezborodovs, P. Winkler, L. Bukelskis, N. Sartorius

Erschienen in: Social Psychiatry and Psychiatric Epidemiology | Ausgabe 5/2016

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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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Literatur
1.
Zurück zum Zitat Sartorius N, Schulze H (2005) Reducing the stigma of mental illness: a report from a Global Association. Cambridge University Press, New York Sartorius N, Schulze H (2005) Reducing the stigma of mental illness: a report from a Global Association. Cambridge University Press, New York
2.
Zurück zum Zitat Thornicroft G, Brohan E, Rose D et al (2009) Global pattern of experienced and anticipated discrimination against people with schizophrenia: a cross-sectional survey. Lancet 373:408–415CrossRefPubMed Thornicroft G, Brohan E, Rose D et al (2009) Global pattern of experienced and anticipated discrimination against people with schizophrenia: a cross-sectional survey. Lancet 373:408–415CrossRefPubMed
3.
Zurück zum Zitat Corrigan PW, Miller FE (2004) Shame, blame, and contamination: a review of the impact of mental illness stigma on family members. J Ment Heal 13:537–548CrossRef Corrigan PW, Miller FE (2004) Shame, blame, and contamination: a review of the impact of mental illness stigma on family members. J Ment Heal 13:537–548CrossRef
4.
Zurück zum Zitat Angermeyer MC, Schulze B, Dietrich S (2003) Courtesy stigma—a focus group study of relatives of schizophrenia patients. Soc Psychiatry Psychiatr Epidemiol 38:593–602CrossRefPubMed Angermeyer MC, Schulze B, Dietrich S (2003) Courtesy stigma—a focus group study of relatives of schizophrenia patients. Soc Psychiatry Psychiatr Epidemiol 38:593–602CrossRefPubMed
5.
Zurück zum Zitat Mehta SI, Farina A (1988) Associative stigma: perceptions of the difficulties of college-aged children of stigmatized fathers. J Soc Clin Psychol 7:192–202CrossRef Mehta SI, Farina A (1988) Associative stigma: perceptions of the difficulties of college-aged children of stigmatized fathers. J Soc Clin Psychol 7:192–202CrossRef
6.
Zurück zum Zitat Ostman M (2002) Stigma by association: psychological factors in relatives of people with mental illness. Br J Psychiatry 181:494–498CrossRefPubMed Ostman M (2002) Stigma by association: psychological factors in relatives of people with mental illness. Br J Psychiatry 181:494–498CrossRefPubMed
7.
Zurück zum Zitat Phelan JC, Bromet EJ, Link BG (1998) Psychiatric illness and family stigma. Schizophr Bull 24:115–126CrossRefPubMed Phelan JC, Bromet EJ, Link BG (1998) Psychiatric illness and family stigma. Schizophr Bull 24:115–126CrossRefPubMed
8.
Zurück zum Zitat Kadri Nadia, Manoudi Fatiha, Soumia Berrada DM (2004) Stigma impact on Moroccan families of patients with schizophrenia. Can J Psychiatry 49:625–629PubMed Kadri Nadia, Manoudi Fatiha, Soumia Berrada DM (2004) Stigma impact on Moroccan families of patients with schizophrenia. Can J Psychiatry 49:625–629PubMed
9.
Zurück zum Zitat Shibre T, Negash A, Kullgren G et al (2001) Perception of stigma among family members of individuals with schizophrenia and major affective disorders in rural Ethiopia. Soc Psychiatry Psychiatr Epidemiol 36:299–303CrossRefPubMed Shibre T, Negash A, Kullgren G et al (2001) Perception of stigma among family members of individuals with schizophrenia and major affective disorders in rural Ethiopia. Soc Psychiatry Psychiatr Epidemiol 36:299–303CrossRefPubMed
10.
Zurück zum Zitat Koschorke M, Padmavati R, Kumar S et al (2014) Experiences of stigma and discrimination of people with schizophrenia in India. Soc Sci Med 123C:149–159CrossRef Koschorke M, Padmavati R, Kumar S et al (2014) Experiences of stigma and discrimination of people with schizophrenia in India. Soc Sci Med 123C:149–159CrossRef
12.
Zurück zum Zitat Buizza C, Schulze B, Bertocchi E et al (2007) The stigma of schizophrenia from patients’ and relatives’ view: a pilot study in an Italian rehabilitation residential care unit. Clin Pract Epidemiol Ment Health 3:23CrossRefPubMedPubMedCentral Buizza C, Schulze B, Bertocchi E et al (2007) The stigma of schizophrenia from patients’ and relatives’ view: a pilot study in an Italian rehabilitation residential care unit. Clin Pract Epidemiol Ment Health 3:23CrossRefPubMedPubMedCentral
13.
Zurück zum Zitat Larson JE, Corrigan P (2008) The stigma of families with mental illness. Acad Psychiatry 32:87–91CrossRefPubMed Larson JE, Corrigan P (2008) The stigma of families with mental illness. Acad Psychiatry 32:87–91CrossRefPubMed
14.
Zurück zum Zitat Struening EL, Perlick DA, Link BG et al (2001) Stigma as a barrier to recovery: the extent to which caregivers believe most people devalue consumers and their families. Psychiatr Serv 52:1633–1638CrossRefPubMed Struening EL, Perlick DA, Link BG et al (2001) Stigma as a barrier to recovery: the extent to which caregivers believe most people devalue consumers and their families. Psychiatr Serv 52:1633–1638CrossRefPubMed
15.
Zurück zum Zitat González-Torres MA, Oraa R, Arístegui M et al (2007) Stigma and discrimination towards people with schizophrenia and their family members. A qualitative study with focus groups. Soc Psychiatry Psychiatr Epidemiol 42:14–23CrossRefPubMed González-Torres MA, Oraa R, Arístegui M et al (2007) Stigma and discrimination towards people with schizophrenia and their family members. A qualitative study with focus groups. Soc Psychiatry Psychiatr Epidemiol 42:14–23CrossRefPubMed
16.
Zurück zum Zitat Gaebel W, Zäske H, Baumann AE et al (2008) Evaluation of the German WPA “program against stigma and discrimination because of schizophrenia–open the doors”: results from representative telephone surveys before and after three years of antistigma interventions. Schizophr Res 98:184–193CrossRefPubMed Gaebel W, Zäske H, Baumann AE et al (2008) Evaluation of the German WPA “program against stigma and discrimination because of schizophrenia–open the doors”: results from representative telephone surveys before and after three years of antistigma interventions. Schizophr Res 98:184–193CrossRefPubMed
17.
Zurück zum Zitat Henderson C, Thornicroft G (2013) Evaluation of the time to change programme in England 2008–2011. Br J Psychiatry Suppl 55:s45–s48CrossRefPubMed Henderson C, Thornicroft G (2013) Evaluation of the time to change programme in England 2008–2011. Br J Psychiatry Suppl 55:s45–s48CrossRefPubMed
18.
Zurück zum Zitat Stuart H, Arboleda-Florez J, Sartorius N (2012) Paradigms lost: fighting stigma and the lessons learned. Oxford University Press, New York Stuart H, Arboleda-Florez J, Sartorius N (2012) Paradigms lost: fighting stigma and the lessons learned. Oxford University Press, New York
19.
Zurück zum Zitat Corrigan P, Michaels PJ, Morris S (2015) Do the effects of antistigma programs persist over time? Findings from a meta-analysis. Psychiatr Serv 66:543–546CrossRefPubMed Corrigan P, Michaels PJ, Morris S (2015) Do the effects of antistigma programs persist over time? Findings from a meta-analysis. Psychiatr Serv 66:543–546CrossRefPubMed
20.
Zurück zum Zitat Yang LH, Chen F, Sia KJ et al (2014) “What matters most:” a cultural mechanism moderating structural vulnerability and moral experience of mental illness stigma. Soc Sci Med 103:84–93CrossRefPubMed Yang LH, Chen F, Sia KJ et al (2014) “What matters most:” a cultural mechanism moderating structural vulnerability and moral experience of mental illness stigma. Soc Sci Med 103:84–93CrossRefPubMed
21.
Zurück zum Zitat Evans-Lacko S, Courtin E, Fiorillo A et al (2014) The state of the art in European research on reducing social exclusion and stigma related to mental health: a systematic mapping of the literature. Eur Psychiatry 29:381–389CrossRefPubMed Evans-Lacko S, Courtin E, Fiorillo A et al (2014) The state of the art in European research on reducing social exclusion and stigma related to mental health: a systematic mapping of the literature. Eur Psychiatry 29:381–389CrossRefPubMed
22.
23.
Zurück zum Zitat Mundt AP, Frančišković T, Gurovich I et al (2012) Changes in the provision of institutionalized mental health care in post-communist countries. PLoS ONE 7:e38490CrossRefPubMedPubMedCentral Mundt AP, Frančišković T, Gurovich I et al (2012) Changes in the provision of institutionalized mental health care in post-communist countries. PLoS ONE 7:e38490CrossRefPubMedPubMedCentral
24.
Zurück zum Zitat Goffman E (1969) Stigma: notes on the management of spoiled identity. Postgrad Med J 45:642CrossRef Goffman E (1969) Stigma: notes on the management of spoiled identity. Postgrad Med J 45:642CrossRef
25.
Zurück zum Zitat Scheff TJ (1975) Labeling madness. Prentice-Hall, Englewood Cliffs Scheff TJ (1975) Labeling madness. Prentice-Hall, Englewood Cliffs
26.
Zurück zum Zitat Erickson CD (2006) On the stigma of mental illness: practical strategies for research and social change. Psychiatr Serv 57:1048CrossRef Erickson CD (2006) On the stigma of mental illness: practical strategies for research and social change. Psychiatr Serv 57:1048CrossRef
27.
Zurück zum Zitat Corrigan PW, Rao D (2012) On the self-stigma of mental illness: stages, disclosure, and strategies for change. Can J Psychiatry 57:464–469PubMedPubMedCentral Corrigan PW, Rao D (2012) On the self-stigma of mental illness: stages, disclosure, and strategies for change. Can J Psychiatry 57:464–469PubMedPubMedCentral
28.
Zurück zum Zitat Link BG, Phelan JC (2001) Conceptualizing stigma. Annu Rev Sociol 27:363–385CrossRef Link BG, Phelan JC (2001) Conceptualizing stigma. Annu Rev Sociol 27:363–385CrossRef
29.
Zurück zum Zitat Stevenson A (2010) Oxford dictionary of English, 3rd edn. Oxford University Press, Oxford Stevenson A (2010) Oxford dictionary of English, 3rd edn. Oxford University Press, Oxford
30.
Zurück zum Zitat Dicicco-Bloom B, Crabtree BF (2006) The qualitative research interview. Med Educ 40:314–321CrossRefPubMed Dicicco-Bloom B, Crabtree BF (2006) The qualitative research interview. Med Educ 40:314–321CrossRefPubMed
31.
Zurück zum Zitat Braun V, Clarke V (2006) Using thematic analysis in psychology. Qual Res Psychol 3(2):77–101CrossRef Braun V, Clarke V (2006) Using thematic analysis in psychology. Qual Res Psychol 3(2):77–101CrossRef
32.
Zurück zum Zitat Angermeyer MC, Beck M, Dietrich S, Holzinger A (2004) The stigma of mental illness: patients’ anticipations and experiences. Int J Soc Psychiatry 50:153–162CrossRefPubMed Angermeyer MC, Beck M, Dietrich S, Holzinger A (2004) The stigma of mental illness: patients’ anticipations and experiences. Int J Soc Psychiatry 50:153–162CrossRefPubMed
34.
Zurück zum Zitat Zou H, Li Z, Arthur D, Wang H (2014) Self-management in Chinese people with schizophrenia and their caregivers: a qualitative study on facilitators and barriers. Int J Ment Health Nurs 23:355–363CrossRefPubMed Zou H, Li Z, Arthur D, Wang H (2014) Self-management in Chinese people with schizophrenia and their caregivers: a qualitative study on facilitators and barriers. Int J Ment Health Nurs 23:355–363CrossRefPubMed
36.
Zurück zum Zitat Birchwood M, Cochrane R (1990) Families coping with schizophrenia: coping styles, their origins and correlates. Psychol Med 20:857–865CrossRefPubMed Birchwood M, Cochrane R (1990) Families coping with schizophrenia: coping styles, their origins and correlates. Psychol Med 20:857–865CrossRefPubMed
37.
Zurück zum Zitat Barrowclough C, Parle M (1997) Appraisal, psychological adjustment and expressed emotion in relatives of patients suffering from schizophrenia. Br J Psychiatry 171:26–30CrossRefPubMed Barrowclough C, Parle M (1997) Appraisal, psychological adjustment and expressed emotion in relatives of patients suffering from schizophrenia. Br J Psychiatry 171:26–30CrossRefPubMed
38.
Zurück zum Zitat Scazufca M, Kuipers E (1999) Coping strategies in relatives of people with schizophrenia before and after psychiatric admission. Br J Psychiatry 174:154–158CrossRefPubMed Scazufca M, Kuipers E (1999) Coping strategies in relatives of people with schizophrenia before and after psychiatric admission. Br J Psychiatry 174:154–158CrossRefPubMed
39.
Zurück zum Zitat Pharoah F, Mari J, Rathbone J, Wong W (2010) Family intervention for schizophrenia. Cochrane Database Syst Rev (12):CD000088 Pharoah F, Mari J, Rathbone J, Wong W (2010) Family intervention for schizophrenia. Cochrane Database Syst Rev (12):CD000088
40.
Zurück zum Zitat Hanzawa S, Bae J-K, Tanaka H et al (2010) Personal stigma and coping strategies in families of patients with schizophrenia: comparison between Japan and Korea. Asia Pac Psychiatry 2:105–113CrossRef Hanzawa S, Bae J-K, Tanaka H et al (2010) Personal stigma and coping strategies in families of patients with schizophrenia: comparison between Japan and Korea. Asia Pac Psychiatry 2:105–113CrossRef
41.
Zurück zum Zitat Scazufca M, Kuipers E (1996) Links between expressed emotion and burden of care in relatives of patients with schizophrenia. Br J Psychiatry 168:580–587CrossRefPubMed Scazufca M, Kuipers E (1996) Links between expressed emotion and burden of care in relatives of patients with schizophrenia. Br J Psychiatry 168:580–587CrossRefPubMed
42.
Zurück zum Zitat Kuipers E, Bebbington P, Dunn G et al (2006) Influence of carer expressed emotion and affect on relapse in non-affective psychosis. Br J Psychiatry 188:173–179CrossRefPubMed Kuipers E, Bebbington P, Dunn G et al (2006) Influence of carer expressed emotion and affect on relapse in non-affective psychosis. Br J Psychiatry 188:173–179CrossRefPubMed
43.
Zurück zum Zitat Raune D, Kuipers E, Bebbington PE (2004) Expressed emotion at first-episode psychosis: investigating a carer appraisal model. Br J Psychiatry 184:321–326CrossRefPubMed Raune D, Kuipers E, Bebbington PE (2004) Expressed emotion at first-episode psychosis: investigating a carer appraisal model. Br J Psychiatry 184:321–326CrossRefPubMed
44.
Zurück zum Zitat Kuipers E, Onwumere J, Bebbington P (2010) Cognitive model of caregiving in psychosis. Br J Psychiatry 196:259–265CrossRefPubMed Kuipers E, Onwumere J, Bebbington P (2010) Cognitive model of caregiving in psychosis. Br J Psychiatry 196:259–265CrossRefPubMed
45.
Zurück zum Zitat Golubeva N, Naudts K, Gibbs A et al (2006) Psychiatry in the Republic of Belarus. Int Psychiatry 3(3):11–13 Golubeva N, Naudts K, Gibbs A et al (2006) Psychiatry in the Republic of Belarus. Int Psychiatry 3(3):11–13
46.
Zurück zum Zitat Thompson JW (1994) Trends in the development of psychiatric services, 1844–1994. Hosp Comm Psychiatry 45:987–992 Thompson JW (1994) Trends in the development of psychiatric services, 1844–1994. Hosp Comm Psychiatry 45:987–992
47.
Zurück zum Zitat Accordino MP, Porter DF, Morse T (2001) Deinstitutionalization of persons with severe mental illness: context and consequences. J Rehabil 67:16 Accordino MP, Porter DF, Morse T (2001) Deinstitutionalization of persons with severe mental illness: context and consequences. J Rehabil 67:16
48.
Zurück zum Zitat Curson DA, Pantelis C, Ward J, Barnes TR (1992) Institutionalism and schizophrenia 30 years on. Clinical poverty and the social environment in three British mental hospitals in 1960 compared with a fourth in 1990. Br J Psychiatry 160:230–241 (discussion 241–243) CrossRefPubMed Curson DA, Pantelis C, Ward J, Barnes TR (1992) Institutionalism and schizophrenia 30 years on. Clinical poverty and the social environment in three British mental hospitals in 1960 compared with a fourth in 1990. Br J Psychiatry 160:230–241 (discussion 241–243) CrossRefPubMed
49.
50.
Zurück zum Zitat Perlick DA, Nelson AH, Mattias K et al (2011) In our own voice-family companion: reducing self-stigma of family members of persons with serious mental illness. Psychiatr Serv 62:1456–1462CrossRefPubMed Perlick DA, Nelson AH, Mattias K et al (2011) In our own voice-family companion: reducing self-stigma of family members of persons with serious mental illness. Psychiatr Serv 62:1456–1462CrossRefPubMed
51.
Zurück zum Zitat Van der Sanden RLM, Stutterheim SE, Pryor JB et al (2014) Coping with stigma by association and family burden among family members of people with mental illness. J Nerv Ment Dis 202(10):710–717 CrossRef Van der Sanden RLM, Stutterheim SE, Pryor JB et al (2014) Coping with stigma by association and family burden among family members of people with mental illness. J Nerv Ment Dis 202(10):710–717 CrossRef
Metadaten
Titel
Experience of stigma in private life of relatives of people diagnosed with schizophrenia in the Republic of Belarus
verfasst von
D. Krupchanka
N. Kruk
J. Murray
S. Davey
N. Bezborodovs
P. Winkler
L. Bukelskis
N. Sartorius
Publikationsdatum
12.02.2016
Verlag
Springer Berlin Heidelberg
Erschienen in
Social Psychiatry and Psychiatric Epidemiology / Ausgabe 5/2016
Print ISSN: 0933-7954
Elektronische ISSN: 1433-9285
DOI
https://doi.org/10.1007/s00127-016-1190-y

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