Bipolar Affektif Bozukluk Tanılı Bireylerin Deneyimleri ve Stigmatizasyon Durumlarının Fenomenolojik Desen Kullanılarak Niteliksel Olarak Değerlendirilmesi

Abstract

Bipolar bozukluk, depresif ve manik/hipomanik ataklar yaşayan, işlev kaybına neden olan ciddi bir ruhsal bozukluktur. Cinsiyet ayrımı olmaksızın nüfusun yaklaşık %1'ini etkileyenen kalıcı, önemli ve ciddi psikiyatrik bozukluklardan biridir. Bu bozukluğu yaşayan bireyler stigmatizasyon/damgalanma deneyimi yaşayabilir, hem aileden hem de sosyal çevreden dışlanabilirler. Kişiler yalnızca durumlarının ve eşlik eden semptomların karmaşıklığıyla değil, aynı zamanda olumsuz tutumların ve toplumsal etiketlemenin ağırlığıyla da mücadele etmek zorundadır. Çalışmanın amacı, bipolar affektif bozukluk tanılı bireylerin deneyimleri ve stigmatizasyon durumlarını derinlemesine görüşmeler ile ve fenomenolojik desen kullanarak niteliksel olarak değerlendirmektir. Bu araştırma niteliksel (kalitatif) bir araştırmadır. İstanbul’da bulunan bir kamu üniversitesi tıp fakültesi hastanesi psikiyatri polikliniğine başvuran “bipolaraffektif bozukluk” tanılı, remisyon döneminde olan, araştırmaya katılmayı gönüllü olarak kabul eden 23-61 yaş arası 12 hasta ile görüşülmüştür. Örneklem, genel psikiyatri polikliniğine gelen hastalardan amaçlı örneklemeye uygun olarak maksimum çeşitlilik ile seçilmiştir. Çalışma Eylül-Ekim 2023 ayında yapılmıştır. Görüşmelerde derinlemesine, yarı yapılandırılmış yüz yüze görüşme yöntemi kullanılmıştır. Çalışmada dört ana tema belirlenmiştir; bunlar, bipolar bozukluk ve tanı alma süreci, bipolar bozukluk sebebiyle karşılaşılan sorunlar ve deneyimler, atak dönemindeki deneyimler ve damgalanma hissi ve damgalayıcı durumlarla baş etme durumlarıdır. Katılımcıların bir kısmı tanılarını kabul ederken, diğer katılımcılar direnç göstermiştir. Bazı katılımcılar tanılarını kabul ettiği için damgalanmadan fazla etkilenmezken, çoğu katılımcı ise damgalanma korkusuyla tanılarını gizlemeyi tercih etmiştir. İş bulma ve sosyal ilişkilerde çeşitli zorluklar yaşamışlardır. Destekleyici aile ve bilgi birikimine sahip olanlar, damgalanmadan daha az etkilenmiştir. Damgalamanın hastaların yaşam kalitesine etkisini en aza indirmek için tanıları hakkında bilgilendirilmelerinin faydalı olabileceğini düşünülmüştür. Damgalanmanın azaltılması için toplumsal ve bireysel eğitim ve farkındalık artırılmalıdır.

Keywords

• bipolar affektif bozukluk
• damgalama
• stigmatizasyon
• kendini damgalama
• niteliksel

Qualitative Evaluation of the Experiences and Stigmatization of Individuals Diagnosed with Bipolar Affective Disorder (BAD) Using Phenomenological Design

Abstract

Bipolar affective disorder (BAD) is a chronic and serious mental condition marked by depressive and manic/hypomanic episodes, often causing significant functional impairment. It affects about 1% of the population and can lead to social exclusion and stigmatization. The most important reason they fight against stigma is the public's perception of the disease. This qualitative study aimed to explore the experiences and perceptions of stigma among individuals diagnosed with bipolar affective disorder (BAD), using in-depth interviews and a phenomenological approach. The study was conducted in September–October 2023 at a public university hospital in İstanbul. Twelve patients aged 23–61, in remission and volunteering to participate, were selected using purposive sampling with maximum variation. Data were collected through semi-structured, face-to-face interviews. Four main themes emerged: receiving the diagnosis, challenges related to the disorder, experiences during episodes, and stigma and coping. While some participants accepted their diagnosis, others showed resistance. Many preferred to hide their condition due to fear of stigma, which affected their social relationships and job opportunities. The study suggests that increasing both societal and individual awareness through education may help reduce stigmatization and improve the quality of life for individuals with BAD.

Keywords

• bipolar affective disorder
• qualitative
• stigma
• self-stigma

References

1. Andreazza, A. C., Frey, B. N., Erdtmann, B., Salvador, M., Rombaldi, F., Santin, A., ... &Kapczinski, F. (2007). DNA damage in bipolardisorder. Psychiatry research, 153(1), 27-32.https://doi.org/10.1016/j.psychres.2006.08.001
2. Angst, J. (2013). Bipolardisorders in DSM-5: Strengths, problems and perspectives. International Journal of BipolarDisorders, 1(1), 1-3. https://doi.org/10.1186/2194-7511-1-3.
3. Arnold, L. M., Witzeman, K. A., Swank, M. L., McElroy, S. L., &KeckJr, P. E. (2000). Health-related quality of life using the SF-36 in patients with bipolar disorder compared with patients with chronic back pain andt he general population. Journal of affective disorders, 57(1-3), 235-239. https://doi.org/10.1016/S0165-0327(99)00162-1.
4. Asan, Ö. (2019). Ruhsal Hastalıklar ve Damgalama; Toplumda, Medyada, Sağlık Çalışanlarda ve Her Yerde... Sakarya Tıp Dergisi, 9(2), 199-205. https://doi.org/10.31832/smj.470300
5. Au, C. H., Wong, C. S. M., Law, C. W., Wong, M. C., &Chung, K. F. (2019). Self-stigma, stigma coping and functioning in remitted bipolar disorder. General hospital psychiatry, 57, 7-12.https://doi.org/10.1016/j.genhosppsych.2018.11.008.
6. Avcil, C., Bulut, H., & Hızlı Sayar, G. (2016). Psikiyatrik hastalıklar ve damgalama. Üsküdar Üniversitesi Sosyal Bilimler Dergisi, 2, 175-202. https://doi.org/10.32739/uskudarsbd.2.2.4.
7. Bassett, J., Lloyd, C., &Bassett, H. (2001). Work issues for young people with psychosis: Barriers to employment. British Journal of Occupational Therapy, 64(2), 66-72. https://doi.org/10.1177/030802260106400201.
8. Bekiroğlu, S. (2021). Ruhsal hastalığa sahip bireylere yönelik damgalama: etkileyen faktörlere ve bireyler üzerindeki etkilerine dair kavramsal bir çalışma. OPUS International Journal of Society Researches, 17(33), 595-618. https://doi.org/10.26466/opus.825384

9. Bilir, M. K. (2018). Deinstitutionalization in mental health policy: From institutional-based to community-based mental health care services. Home. https://doi.org/10.17025/hujhs.450699.
10. Bruni, A., Carbone, E. A., Pugliese, V., Aloi, M., Calabrò, G., Cerminara, G., ... & De Fazio, P. (2018). Childhood adversities are different in schizophrenic spectrum disorders, bipolar disorder, and major depressive disorder. BMC Psychiatry, 18, 1-7.https://doi.org/10.1186/s12888-018-1972-8.
11. Cam, O., & Bilge, A. (2013). The process of stigmatization, attitude, and belief about mental illness and patient in Turkey: a systematic review/Turkiye'de ruhsal hastaliga/Hastaya yonelik inanc, tutum ve damgalama sureci: sistematik derleme. Journal of Psychiatric Nursing, 4(2), 91+. https://link.gale.com/apps/doc/A365982238/AONE?u=anon~cfb5522c&sid=googleScholar&xid=0b9b30ea
12. Çam, O., & Çuhadar, D. (2011). Ruhsal hastalığa sahip bireylerde damgalama süreci ve içselleştirilmiş damgalama. Psikiyatri Hemşireliği Dergisi, 2(3), 136-140.
13. Çam MO, Uğuryol M.(2019). Ruhsal Hastalıktan İyileşmeye Kültürel Etki. Psikiyatride Güncel Yaklaşımlar, 11:55–64. https://doi.org/10.18863/pgy.391783.
14. Connell, J., O'Cathain, A., &Brazier, J. (2014). Measuring quality of life in mental health: Are we asking the right questions? Social Science &Medicine, 120, 12–20. https://doi.org/10.1016/j.socscimed.2014.09.023.
15. Corrigan, P. W., &Rao, D. (2012). On the self-stigma of mental illness: Stages, disclosure, and strategies for change. The Canadian Journal of Psychiatry, 57(8), 464-469.https://doi.org/10.1177/070674371205700806.
16. Corrigan, P. W., Morris, S., Larson, J., Rafacz, J., Wassel, A., Michaels, P., ... &Rüsch, N. (2010). Self‐stigma and coming out about one's mental illness. Journal of Community Psychology, 38(3), 259-275. https://doi.org/10.1002/jcop.20432.
17. Demir, M. M. ve Buz, S. (2023). Eleştirel sosyal hizmet çerçevesinde şizofreni tanılı kişilerin ve yakınlarının damgalanma deneyimleri: Zonguldak örneği.Toplum ve Sosyal Hizmet, 34(4), 869-
18. 893. https://doi.org/10.33417/tsh.1266133.
19. Ellison, N., Mason, O., &Scior, K. (2013). Bipolar disorder and stigma: A systematic review of the literature. Journal of Affective Disorders, 151(3), 805–820. https://doi.org/10.1016/j.jad.2013.07.010.Favre, S., & Richard-Lepouriel, H. (2023). Self-stigma and bipolar disorder: A systematic review and best-evidence synthesis. Journal of Affective Disorders, 332, 81-91. https://doi.org/10.1016/j.jad.2023.05.041.
20. Ghai, S., Sharma, N., Sharma, S., &Kaur, H. (2013). Shame&stigma of mentalillness. Delhi Psychiatry Journal, 16(2), 293-301.
21. Goffman, E. (2003). Stigma. Praha: Sociologickénakladatelství. ISBN 80-8629-21-0.
22. Goffman, E. (2009). Stigma: Notes on the management of spoiled identity. Simon and schuster.
23. J R Soc Med.
24. Gözen,Ö., Buz,S.,(2020).Türkiye’de Koruyucu ve Önleyici Ruh Sağlığı Uygulamaları: Sosyal Hizmet Uzmanları ve Hastaların Deneyimlerine Dair Nitel Bir Araştırma. Psikiyatride Güncel Yaklaşımlar. 2020; 12(Suppl 1):18-42 doi: 10.18863/pgy.662628.
25. Thornicroft, G., Mehta, N., Clement, S., Evans-Lacko, S., Doherty, M., Rose, D., Koschorke, M., Shidhaye, R., O'Reilly, C., & Henderson, C. (2016). Evidence for effective interventions to reduce mental-health-related stigma and discrimination. Lancet (London, England), 387(10023), 1123–1132. https://doi.org/10.1016/S0140-6736(15)00298-6
26. Gray A. J. (2002). Stigma in psychiatry. Journal of the Royal Society of Medicine, 95(2), 72–76. https://doi.org/10.1177/014107680209500205
27. Gur, K., Sener, N. U. R. C. A. N., Kucuk, L., Cetindag, Z., & Basar, M. (2012). The beliefs of teachers toward mental illness. Procedia: Socia and Behavioral Sciences, 47, 1146–1152. https://doi.org/10.1016/j.sbspro.2012.06.733.
28. Gutiérrez-Rojas, L., Jurado, D., &Gurpegui, M. (2011). Factors associated with work, social life, and family life disability in bipolar disorder patients. Psychiatry Research, 186(2-3), 254-260. https://doi.org/10.1016/j.psychres.2010.07.019.
29. Hawke, L. D., Parikh, S. V., &Michalak, E. E. (2013). Stigma and bipolar disorder: A review of theliterature. Journal of Affective Disorders, 150(2), 181-191. https://doi.org/10.1016/j.jad.2013.02.028.
30. Henderson, C., Evans-Lacko, S., &Thornicroft, G. (2013). Mental illness stigma, helpseeking, and public health programs. AmericanJournal of PublicHealth, 103(5), 777–780. https://doi.org/10.2105/AJPH.2012.301050.
31. Ironside, M. L., Johnson, S. L., & Carver, C. S. (2020). Identity in bipolar disorder: Self‐worth and achievement. Journal of personality, 88(1), 45-58.https://doi.org/10.1111/jopy.12461.
32. Jolfaei, A. G., Ataei, S., Ghayoomi, R., &Shabani, A. (2019). High frequency of bipolar disorder comorbidity in medical inpatients. Iranian Journal of Psychiatry, 14(1), 60.https://doi.org/10.18502/ijps.v14i1.424.
33. Jönsson, P. D., Wijk, H., Skärsäter, I., & Danielson, E. (2008). Persons living with bipolar disorder—their view of the illness and the future. Issues in Mental Health Nursing, 29(11), 1217-1236. https://doi.org/10.1080/01612840802214166.
34. Kadushin, G. (2000). Family secrets: Disclosure of HIV status among gay men with HIV/AIDS to thefamily of origin. Social Work in Health Care, 30(3), 1-17. https://doi.org/10.1300/J010v30n03_01.
35. Kaltenboeck, A., Winkler, D., &Kasper, S. (2016). Bipolar and related disorders in DSM-5 and ICD-10. CNS Spectrums, 21(4), 318-323. https://doi.org/10.1017/S1092852916000278.
36. Khaleghi, A., Mohammadi, M. R., Zandifar, A., Ahmadi, N., Alavi, S. S., Ahmadi, A., ... &Badrfam, R. (2018). Epidemiology of psychiatric disorders in children and adolescents in Tehran, 2017. Asian Journal of Psychiatry, 37, 146-153. https://doi.org/10.1016/j.ajp.2018.07.014.
37. Krupa, T., Kirsh, B., Cockburn, L., &Gewurtz, R. (2009). Understanding the stigma of mental illness in employment. Work, 33(4), 413-425. https://doi.org/10.3233/WOR-2009-0894.
38. Kumar, P., Sharma, N., Ghai, S., &Grover, S. (2019). Perception about marriage among caregivers of patients with schizophrenia and bipolar disorder. Indian Journal of Psychological Medicine, 41(5), 440-447.https://doi.org/10.1177/0253717620920188.
39. Latifian, M., Raheb, G., Abdi, K., &Alikhani, R. (2023). The bipolar patients’ family experiences of theoutcomes of encountering stigma in Tehran: A qualitative study. International Journal of Social Psychiatry, 69(2), 503–511. https://doi.org/10.1177/00207640221098920.
40. Link, B. G., Cullen, F. T., Struening, E., Shrout, P. E., &Dohrenwend, B. P. (1989). A modified labeling theory approach to mental disorders: An empirical assessment. American sociological review, 400-423.https://doi.org/10.2307/2095613.
41. Link, B. G., Struening, E. L., Neese-Todd, S., Asmussen, S., &Phelan, J. C. (2002). On describing and seeking to change the experience of stigma. Psychiatric Rehabilitation Skills, 6(2), 201-231. https://doi.org/10.1080/15332740209524639.
42. Mak, W. W., &Cheung, R. Y. (2008). Affiliate stigma among care givers of people with intellectual disability or mental illness. Journal of Applied Research in Intellectual Disabilities, 21(6), 532-545. https://doi.org/10.1111/j.1468-3148.2007.00413.x
43. Mohammadi, M., Zare, A., &Ahmadi, K. (2019). Prevalence and correlates of psychiatric disorders in a nationalsurvey of Iranian children and adolescents. IranianJournal of Psychiatry, 14(1), 1-10. https://doi.org/10.29252/ijps.14.1.1
44. Murthy, R. S. (2002). Stigma is universal but experiences are local. World Psychiatry, 1(1), 28. https://doi.org/10.1002/j.2051-5545.2002.tb00010.x.
45. Naccarella, L., &Graffam, J. H. (1997). Disposition toward employment and perspectives on the employment process held by clients with psychiatric disabilities. Australian Disability Review, (3), 3-15.
46. O'Donnell, L., Himle, J. A., Ryan, K., Grogan-Kaylor, A., McInnis, M. G., Weintraub, J., & Deldin, P. (2017). Social aspects of the workplace among individuals with bipolardisorder. Journal of the Societ for Social Work andResearch, 8(3), 379-398. https://doi.org/10.1086/693684.
47. Ouwehand, E., Braam, A. W., Renes, J., Muthert, H. J., Stolp, H. A., Garritsen, H. H., &Zock, H. T. (2019). Prevalence of religious and spiritual experiences and the perceived influence there of in patients with bipolar disorder in a Dutch specialist outpatient center. The Journal of Nervous and Mental Disease, 207(4), 291-299. https://doi.org/10.1097/NMD.0000000000001010.
48. Özden, S. A., Tekindal, M., Gedik, T. E., Erim, F., Ege, A., & Tekindal, M. A. (2022). Nitel Araştırmaların rapor edilmesi: CoREQ kontrol listesinin Türkçe uyarlaması. Avrupa Bilim ve Teknoloji Dergisi, (35), 522-529.https://doi.org/10.31590/ejosat.976957.
49. Pal, A., Saxena, V., & Avinash, P. (2021). Stigma in bipolar affective disorder: A systematic quantitative literature review of Indian studies. Indian Journal of Psychological Medicine, 43(3), 187–194. https://doi.org/10.1177/02537176211016802.
50. Pallesen, K., Brown, J., Rose, D., & Lawrence, V. (2020). An interpretative phenomenological analysis of the experience of receiving a diagnosis of bipolar disorder. Journal of Mental Health, 29(3), 358-363. https://doi.org/10.1080/09638237.2019.1630686.
51. Perich, T., Mitchell, P. B., & Vilus, B. (2022). Stigma in bipolardisorder: A current review of the literature. Australian & New ZealandJournal of Psychiatry, 56(9), 1060–1064. https://doi.org/10.1177/00048674211057757.
52. Perlick, D. A., Rosenheck, R. A., Clarkin, J. F., Sirey, J. A., Salahi, J., Struening, E. L., & Link, B. G. (2001). Stigma as a barrier to recovery: Adverse effects of perceived stigma on social adaptation of persons diagnosed with bipolar affective disorder. Psychiatric Services, 52(12), 1627-1632. https://doi.org/10.1176/appi.ps.52.12.1627.
53. Robinson, P., Turk, D., Jilka, S., & Cella, M. (2019). Measuring attitudes towards mental health using social media: investigating stigma and trivialisation. Social psychiatry and psychiatric epidemiology, 54(1), 51–58. https://doi.org/10.1007/s00127-018-1571-5
54. Seal, K., Mansell, W., &Mannion, H. (2008). What lies between hypomania and bipolar disorder? A qualitative analysis of 12 non-treatment-seeking people with a history of hypomanic experiences and no history of major depression. Psychology and Psychotherapy: Theory, Research and Practice, 81(1), 33-53. https://doi.org/10.1348/147608307X230942.
55. Sibitz, I., Unger, A., Woppmann, A., Zidek, T., &Amering, M. (2011). Stigma resistance in patients with schizophrenia. Schizophrenia Bulletin, 37(2), 316–323. https://doi.org/10.1093/schbul/sbp122.
56. Smart, L., &Wegner, D. M. (1999). Covering up what can't be seen: Conceal able stigma and mental control. Journal of Personality and Socia Psychology, 77(3), 474. https://doi.org/10.1037/0022-3514.77.3.474.
57. Stuart, H. (2006). Medyada ruhsal hastalık ve tedavilerinin tasviri. CNS İlaçları, 20, 99–106. https://doi.org/10.2165/00023210-200620020-00002.
58. Thomé, E. D. S., Dargél, A. A., Migliavacca, F. M., Potter, W. A., Jappur, D. M., Kapczinski, F., &Ceresér, K. M. (2012). Stigma experiences in bipolar patients: the impact upon functioning. Journal of Psychiatric and Mental Health Nursing, 19(8), 665-671. https://doi.org/10.1111/j.1365-2850.2011.01849.x
59. Thornicroft, G., Brohan, E., Rose, D., Sartorius, N., &Leese, M. (2009). Global pattern of experienced and anticipated discrimination against people withschizophrenia: A cross-sectional survey. The Lancet, 373(9661), 408-415. https://doi.org/10.1016/S0140-6736(08)61824-1.
60. Tostes,G.W.,Cury,E.V., & Brisola, E.(2024).A Herculean Saga:The lived experience of people with bipolar disorder. Psicol. estud., 29, e61581, 1-18. https://doi.org/10.4025/psicolestud.v29i0.61581 .
61. Wong, C., Davidson, L., Anglin, D., Link, B., Gerson, R., Malaspina, D., ... &Corcoran, C. (2009). Stigma in families of individuals in early stages of psychotic illness: Family stigma and early psychosis. Early Intervention in Psychiatry, 3(2), 108–115. https://doi.org/10.1111/j.1751-7893.2009.00112.x.
62. Yassıbaş, U. (2015). Otizm spektrum bozukluğu olan çocuğa sahip anne babaların yaşam deneyimlerine derinlemesine bakış (Order No. 28635329). ProQuestDissertations&Theses Global. http://dx.doi.org/10.15390/EB.2019.7366.