Experiencing stigma: Nepalese perspectives

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Experiencing stigma: Nepalese perspectives
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  458Kathmandu University Medical Journal (2008), Vol. 6, No. 4, Issue 24, 458-465 Original Article  Correspondence Dr. Shailendra Raj AdhikariDepartment of PsychiatryKathmandu Medical College Teaching Hospital (KMCTH)Sinamangal, Kathmandu, NepalE-mail: sra372@gmail.com Experiencing stigma: Nepalese perspectives Adhikari SR¹, Pradhan SN², Sharma SC² ¹Lecturer, ²Assistant Professors, Department of Psychiatry, KMCTH, Sinamangal, Nepal AbstractBackground:  Experiencing stigma by patients with mental illness in their day to day lives has substantial importance in treatment, compliance and quality of life. There is dearth of information and researches in experiences/ perceptions and coping of stigma in Nepal. Aims:  The objective of this study was to nd out experiences/ perceptions and coping of stigma and stigmatizations among patients with mental illness. Materials and methods:  This is a retrospective, cross sectional study of patients admitted in psychiatry ward. Patients were assessed using self-report questionnaire which focused on beliefs about discrimination against mental illness, rejection experiences, and ways of coping with stigma. Patient’s socio demographic proles were also assessed. Results: Fifty three patients completed questionnaire concerning various constructs of stigma. There were 29 male  patients and 24 female patients. Majority (N=45; 84.9%) were of Hindu religion but there were mixed numbers regarding caste. Most of the patients were aware of the stigma associated with mental illness. There were experiences of rejection by family members and colleagues (N=23; 43.4%) and health care professional (N=16; 30.2%). There were strong perceptions of stigmatization felt by patients in different social circumstances. Though maintaining secrecy and avoidance/withdrawal of stigma provoking scenario were not experienced much, there was a strong sense of advocacy whenever there was any negative view of mental illness. Some of the questionnaire items in “perception”, “rejection” and “coping” showed statistical signicance (p=0.001). Conclusion:  People with mental illness experience stigma during their course of illness and treatment and it is an important determinant for the relapse of symptoms and non-compliance to treatment. Despite experiencing stigma,  patients were generally treated fairly by other people. Patients develop various mechanisms to cope with stigma, mostly secrecy and avoidance. Advocacy and anti-stigma campaign along with positive attitudes of health professionals play important role in decreasing stigmatizing experiences in patients. Key Words: Stigma, stigmatization, mental illness, coping, perception. S tigma marks someone different from others, leading to devaluation of that person. Goffman¹ denes stigma as “an attribute that is deeply discrediting”, where a person is diminished “from a whole and usual  person to a tainted and discounted one”. Stigma has  become a marker for adverse experiences. There are numerous personal accounts of psychiatric illness, where shame overrides even the most extreme of symptoms². In two identical UK public opinion surveys, little change was recorded over ten years, with over 80% endorsing the statement that “most people are embarrassed by mentally ill people”, and about 30% agreeing “I am embarrassed by mentally ill persons”³. Stigma obstructs social integration and recovery as a consequence of certain psychosocial processes leading to stigmatization. These psychosocial constructs include labeling, stereotyping, status loss and discrimination in context of power imbalance 4 . Box 1 The experience of STIGMA ² Shame BlameSecrecyThe “black sheep of the family” roleIsolationSocial exclusionStereotypesDiscriminationPrejudice and discrimination related to mental illness lead to poor treatment compliance, increased social  459isolation, difculty in nding housing, education and employment and increased probability of alcohol and drug abuse.Stigma in mental illness is of three types (a) public stigma, (b) self stigma, (c) courtesy stigma (stigma endured by family and care givers). Apart from public stigma and courtesy stigma, self stigma is the most detrimental one. It leads to worsen individuals’ recovery 5  and prevent him/her from seeking professional assistance 6 .As described in gure 1, negative public opinion about mental illness leading to self stigmatization becomes a stumbling block for the recovery in patients with mental illness. This starts the vicious cycle of stigmatization, leading to struggle to recovery/exaggeration of illness which further leads to isolation from the mainstream culture. These lead to increased burden on patients and their families 8 . Experiences and perceptions of stigma among patients are important to know so that patients can be given adequate counseling and direction to prevent vicious cycles described before. Though stigma related researches and articles are coming in voluminous amount, most of them are attitude surveys of community and patients’ family members and care givers. Very few studies have been done regarding experiences and a concept of stigma among sufferers of mental illness. This study was done in this context and it is the rst study of its kind in Nepal, which tries to nd out experiences/perceptions and coping of stigma. Materials and methods This is a retrospective cross sectional study done at Kathmandu Medical College Teaching Hospital (KMCTH). Department of Psychiatry at KMCTH has in-patients, outpatient services along with clinical  psychology facility. It has three psychiatrists, one clinical psychologist, one qualied medical doctor and one psychiatry nurse along with other nursing and non-technical staffs. The department has 12 inpatient beds along with psychotherapy room and recreational facility. The current study was done at the in-patient unit of the department. Patients who were admitted from January 2007 to June 2007 in the hospital were considered for study. All the patients who were admitted in psychiatry ward were assessed.Following inclusion criteria were used:Patients giving consent for the study1. Patients aged 18-60 years2. Based on assessment by the researchers, the 3.  patient was in remission or not severely illAfter patients’ assessment, a day or two before discharge, they were given self-report questionnaire assessing  beliefs about discrimination against individuals with mental illness, rejection experiences and ways of coping with stigma. During six months of periods, 114 patients were admitted in the psychiatry ward. Eighty seven patients were found to be t to answer the questionnaire. Twenty two patients refused to give consent. Sixty ve  patients were recruited. The questionnaire was modied and derived from versions previously used in other studies 9,10,11 . English to Nepali and Nepali to English translation was done with the help of language faculties of university. Wording and sentences were made easier to understand. Participants rated the section on  perception of stigmatization and experience of rejection using ve point response scales [“Strongly Disagree”, “Slightly Disagree”, “Can’t say/Don’t know”, and “Slightly Agree”, “Strongly Agree”]. Items assessing rejection experiences and coping strategies used three  point response scales [“Yes”, “Don’t Know”, “No”]. Participants were advised to answer “Don’t Know” if they had not encountered the relevant situation, to avoid overestimating negative responses.All socio demographic and questionnaire data were recorded on pre-designed proforma. The collected data were checked and coded manually and entered in the computer. Statistical analysis was performed with SPSS program (version 12). Data interpretation was done along with mean, standard deviation. Chi-Square Test was used to assess the statistical signicance of the associations between the variables. Results There were 53 patients, 29 of them were females and 24 were males. Forty ve (84.9%) patients were of Hindu whereas rest followed other religions. Brahmin (N=11; 20.8%), Chettri (N=17; 32.1%) and Newar (N=13; 24.5%) were the predominant casts. Most of the patients were either students (N=19; 35.8%) or worked in agriculture sector (N=11; 20.8%). Majority of patients were secondary passed (N=21; 39.6%) or certicate passed (N=14; 26.4%) (Table 1).Mean age of patients were 26.7 years and 41 patients gave no evidence of mental illness in the family (Table2). Twenty ve patients had been ill for less than six months whereas ve had been ill for six months to one year. Twenty three patients had duration of illness for more than one year (Table 2).Majority of patients strongly perceived stigmatization against mental illness as shown in Table 3. Stigma  perception items where patients “Slightly Agree” and  460“Strongly Agree” were more than 50 percentage of response were SP1 (Untrustworthy), SP2 (Not Marry), SP4 (Opinion taken less seriously), SP5 (Looked down  by people), SP6 ((Less intelligent), SP9 (Not accepted as close friend) and SP10 (Treatment as a personal failure). This shows strong perceptual responses considering stigma. As shown in Table 5, few patients experienced “rejection” as signs of stigma - “Slightly Agree” and “Strongly Agree” having more than 50  percentage of responses in RE2 (Avoided by other  people), RE9 (Asked to resign due to mental illness), RE10 (Neglected by health professional).Patients in this study gave strong opinion regarding advocacy and confrontation of stigma in social circumstances - Advocacy 1 (Correcting friends holding negative view; Yes[N=38(75.5%)]), Advocacy3 (Complain if treated unfairly; Yes[N=38(71.7%)]), Advocacy4 (Participate in social activities; Yes[N=42(79.2%)]), Advocacy5 (Refuse to resign if asked for; Yes[N=34(64.2%)]) as shown in Table 7. There were few “Yes” responses regarding other items of coping against mental illness - “Secrecy” and “Avoidance” and “Withdrawal”. Most of the responses were either “No” or “Don’t know/can’t say” in these items as given in Table 7. Five items of questionnaire for “stigma perception” [SP2, SP4, SP6, SP9, SP10] had shown statistical signicance as given in Table 4. Only two items of “rejection experience” [RE1, RE2] showed statistical signicance, as given in Table 6. As described in Table 8, there were many items of “coping” showing statistical signicance. Three items of “secrecy” [secrecy2, secrecy3, secrecy 6] showed signicance out of seven items. Out of seven items of “avoidance”, only two showed statistical signicance [avoidance 5, avoidance 6]. Regarding “advocacy”, out of ve items, four items showed statistical signicance [advocacy 1, advocacy 3, advocacy 4, advocacy 5]. This implies strong sense of advocacy in patients whenever they are facing stigma and discrimination.   Public stigma/negative reactions from public Stereotype agreementSelfconcurrence Selfesteem decrement Noncompliance with treatment Impede recovery Fig 1:  Simplied process of self-stigmatization on recovery 7  461 Table 1:  Socio-demographic Characteristics of Patients (N=53)GENDER MaleFemale29 (54.7%)24(45.3%)RELIGIONHinduBuddhistMuslimChristian45(84.9%)4(7.5%)1(1.9%)3(5.7%)CASTEBrahminChettri Newar GurungRaiMagar TamangOthers11(20.8%)17(32.1%)13(24.5%)1(1.9%)2(3.8%)1(1.9%)3(5.7%)5(9.4%)FAMILY TYPEJoint Nuclear Others20(37.7%)29(54.7%)4(7.5%)OCCUPATIONServiceAgricultureBusinessUnemployedLabor StudentOthers6(11.3%)11(20.8%)5(9.4%)5(9.4%)1(1.9%)19(35.8%)6(11.3%)EDUCATIONIlliteratePrimaryLower SecondarySecondaryCerticateBachelor Others3(5.7%)6(11.3%)6(11.3%)21(39.6%)14(26.4%)2(3.8%)1(1.9%) Table 2: Socio-demographic Characteristics of Patients (Contd.) MeanMinimumMaximumStandard Deviation AGE (YEARS)26.7126010.05FAMILY INCOME (RUPEES)84433000200003155.67FAMILY MEMBERS5.552162.52DURATION OF ILLNESS  Number (%) Less than six months 25 (47.2% )(a) 6 months to one year 5 (9.4% )(b) More than one year 23 (43.4% )(c) TOTAL 100 (100% ) FAMILY HISTORY OF MENTAL ILLNESSYES N=12 (22.6%) NO N=41 (77.4%)  462 Table 3:  Questionnaire of “PERCEPTION” of Stigmatization ITEMSStrongly DisagreeSlightly DisagreeCan’t Say/Don’t KnowSlightly AgreeStrongly Agree STIGMA PERCEPTION ( SP )SP1SP2SP3SP4SP5SP6SP7SP8SP9SP 106(11.3%)3(5.7%)4(7.5%)7(13.2%)4(7.5%)4(7.5%)8(15.1%)12(22.6%)4(7.5%)9(17%)6(11.3%)5(9.4%)7(13.2%)3(5.7%)6(11.3%)6(11.3%)8(15.1%)5(9.4%)6(11.3%)4(7.5%)12(22.6%)16(30.2%)12(22.6%)12(22.6%)10(18.9%)10(18.9%)13(24.5%)13(24.5%)14(26.4%)12(22.6%)19(35.8%)9(17%)17(32.1%)23(43.4%)15(28.3%)20(37.7%)16(30.2%)10(18.9%)21(39.6%)22(41.5%)10(18.9%)20(37.7%)13(24.5%)8(15.1%)18(34%)13(24.5%)8(15.1%)13(24.5%)8(15.1%)6(11.3%) Table 4:  Statistical signicance of questionnaire of “PERCEPTION” of Stigmatization ITEMS95% Condence Interval of difference (C.I.) [Lower-Upper]Statistical signicance[ “p” value] STIGMA PERCEPTION ( SP )SP1SP2SP3SP4SP5SP6SP7SP8SP9SP 103.05-3.743.38-4.063.19-3.863.08-3.753.35-4.053.27-3.932.79-3.512.72-3.543.13-3.742.88-3.580.0280.0010.0420.0010.0110.0050.2670.3710.0010.001 Table 5:  Questionnaire of “EXPERIENCES OF REJECTION” due to stigma ITEMSStrongly DisagreeSlightly DisagreeCan’t Say/Don’t KnowSlightly AgreeStrongly Agree REJECTION EXPERIENCE (RE)RE1RE2RE3RE4RE5RE6RE7RE8RE9RE103(5.7%)2(3.8%)7(13.2%)11(20.8%)13(24.5%)13(24.5%)11(20.8%)9(17%)4(7.5)12(22.6%)7(13.2%)9(17%)11(20.8%)7(13.2%)8(15.1%)7(13.2%)2(3.8%)6(11.3%)5(9.4%)4(7.5%)21(39.6%)12(22.6%)10(18.9%)16(30.2%)17(32.1%)14(26.4%)13(24.5%)11(20.8%)14(26.4%)8(15.1%)14(26.4%)7(13.2%)12(22.6%)14(26.4%)5(9.4%)11(20.8%)14(26.4%)12(22.6%)16(30.2%)13(24.5%)8(15.1%)23(43.4%)13(24.5%)5(9.4%)10(18.9%)8(15.1%)13(24.5%)15(28.3%)14(26.4%)16(30.2%)
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