STIGMA ARISING FROM FAMILY MEMBERS OF THE MENTALLY ILL PATIENTS IN HOSPITAL TAIPING

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1 ORIGINAL PAPER STIGMA ARISING FROM FAMILY MEMBERS OF THE MENTALLY ILL PATIENTS IN HOSPITAL TAIPING Tuti MD *, Nursyuhaida MN **, Nik Siti Fatimah M **, Faridah Hanim Z **, Nor Akmar S **, CT Effa FMF **, Khairunnisa MZ **, Marhani M*, Ruzanna Z* *Department of Psychiatry, Universiti Kebangssan Malaysia Medical Center, **Universiti Kebangsaan Malaysia Medical Center ABSTRACT Although public stigma towards the mentally ill is a known challenge, stigma from within the family has not been widely studied. This study aimed to compare the experience of stigma between mentally ill patients and diabetic controls, particularly focusing on stigma arising from family members. This is a cross sectional case control study. The case group consisted of 63 patients who attended the outpatient psychiatric clinic of Hospital Taiping. The control group consisted of 78 diabetic patients attending the outpatient medical clinic, Hospital Taiping and Selama Health Clinic. Patients completed questionnaire assessing stigma experienced by patients. Significantly higher percentage of psychiatric patients (55.6%) experienced stigma compared to diabetic patients (15.4%) (X2 = 25.3, p-value < ). In addition, significantly higher percentage of patients with psychiatric illness received negative comments during the relapse of illness (57.1% vs 16.7%, chi-square = 5.12, p-value = 0.024) compared to diabetic patients. This study demonstrates that family members themselves could be a source of stigma. The findings support current family psycho-education programs in caring for the mentally ill. Keywords: stigma, family, diabetes, mental illness Introduction Stigma is a social-cognitive process that motivates people to avoid the label of mental illness (1). Stigma towards people with mental illness has been widely studied (2, 3). Regardless of the sources, stigma towards people with mental illness is noted to be related to four cues. These include the psychiatric symptoms, social-skills deficits, physical appearance, and labels (1, 4). This perhaps explains the research findings that mentally ill people often are stigmatized more severely than those with other health conditions (1, 5). 1

2 People with mental illness are more likely to be labeled as dangerous, incompetent and to be blamed for their illness (1). The impact could be worse if they experience this from their own family members (6). The experience of stigma usually leads to refusal to seek treatment (7), noncompliance to medication, unemployment and affected social acceptability. While studies on stigma had mainly focused on stigma arising from the public stigma (8) arising from family members has received little attention. Several studies (9, 10) reported that stigma arising from family members is more prevalent. Thus, this study aimed to compare the experience of stigma between mentally ill patients and other common health problems (i.e. diabetes), particularly focusing on stigma arising from family members. Methods This comparative study was carried out in March Cases were psychiatric patients above 18 years old who had attended the Outpatient Psychiatric Clinic of Hospital Taiping and were psychiatrically stable. Controls were diabetic patients above 18 years old who had attended Medical Outpatient Department Hospital Taiping and Larut Matang and Selama Health Clinic. All consecutive patients were invited to participate in the study. Informed consent was taken from respondents. Questionnaire A questionnaire assessing the experience of stigma was designed adapted from a study by Lee et al (9). A pilot study was carried out on 10 patients from various ethnic groups to examine suitability of the questions. A finalized version of the questionnaire was produced. Although the questionnaire was self-report, responses were obtained through structured interview for a third of the patients. The reliability for assessing stigma by family members was good (Chronbach-alpha=0.8). Information on diagnosis and duration of illness were obtained from case notes. Sample size Based on the previous study carried out by Lee et al (9) on experience of stigma in patient with Schizophrenia and patients with Diabetes Mellitus in Hong Kong, significantly more patient with Schizophrenia ( > 40%) than diabetes ( average 15%) experienced stigma from family members, partners, friends and colleagues. These figures were used to calculate the sample size for this study. With a power of 80% and confidence level of 95%, the sample size calculation using the Epi Info version 3.2 showed 57 subjects were needed in each group. Attrition rate of 20 % is expected in this study thus a target of 70 subjects for each group is desirable. Analysis The questions examining experience of stigma required dichotomized. Hence, chi-square test and t-test were used to examine the associations between stigma and other independent variables. While parametric test was used to examine the association for age (as it was normally distributed), non-parametric test was used to examine the association for duration of illness (as it was not normally distributed). SPSS version 12.0 was used to carry out the analyses. 2

3 Results Eighty-eight psychiatric patients in case group and 81 diabetic patients in control group were invited to participate in the study. Among the cases, 13 did not consent, another 13 were excluded as they were mentally unstable and one questionnaire was incomplete. Among the control group, 3 did not consent. The non-participants were younger and a higher percentage was from cases rather than controls (Table 1). The demographic characteristics of participants are shown in Table 2. Patients with psychiatric illness were significantly different from patients with diabetes, as the former were more likely to be younger, unmarried, unemployed and Malays. Table 1. Characteristics of participants vs non-participants (N=171) Characteristics Participants (N=141) Non-participants (N=30) p-value Age, mean (SD) 49.9 (14.0) 41.9 (13.0) 0.007* Gender (n, %) Male Female 84 (87.5) 57 (77.0) 12 (12.5) 17 (23.0) 0.7** Ethnicity (n, %) Malay Non-Malay 87 (87.0) 53(76.8) 13 (13.0) 16 (23.2) 0.84** Case vs control (n, %) Case Control 63(70.0) 78 (96.3) 27 (30.0) 3 (3.7) <0.0001** *Independent t-test **Pearson chi-square Stigma Patients with psychiatric illness (n=35, 55.6%) were more likely to experience stigma compared to patients with diabetes (n=12, 15.4%) (X2=25.3, p<0.0001). Although stigma arising from family members were higher for all 8 items among patients with psychiatric illness compared to diabetes, only 1 variable (ie. received negative comments due to relapse) was found to be significantly different (Table 3). 3

4 Table 2. Characteristics of participants Patients with psychiatric illness (N=63) % Patients with diabetes p-value (N=78) % Age, mean (SD) 41.1 (12.4) 56.9 (11.0) <0.0001* Gender Male Female 36 (57.1) 27 (42.9) 48 (61.5) 30 (38.5) 0.60** Ethnicity Malay Non-Malay 47 (74.6) 16 (25.4) 40 (51.3) 38 (48.7) 0.005** Marital status Single Married Others 32 (50.8) 21 (33.3) 10 (15.9) 3 (3.8) 58 (74.4) 17 (21.8) <0.0001** Employment Employed Unemployed 29(46.0) 34(54.0) 49(62.8) 29(37.2) Education level Primary school Secondary school Tertiary 21(33.3) 30(47.6) 12(19.0) 30(38.5) 37(47.4) 11(14.1) Live with family members Yes No 54 (85.7) 9 (14.3) 71(91.0) 7(9.0) Psychiatric illness Schizophrenia Depression Anxiety Others 35 (55.6) 17 (27.0) 2 (3.2) 9 (14.3) Duration of illness *** * Independent t-test ** Pearson chi-square ***Mann-Whitney U 4

5 Table 3. Stigma from family members among patients with psychiatric illness and diabetes mellitus Patients with psychiatric illness (N=35) % Patients with diabetes (N=12) % p-value Family considered patient highly violent owing to his or her illness 9(25.7) 0(0.0) Anticipated that family members would feel inferior to be with patient Disliked by family members because of illness Anticipated that family members hope that the patient had never been born Patients had been unfairly treated by family members owing to their illness Family members wanted to conceal from others that there was psychiatric patient in the family 13 (37.1) 2(16.7) 0.340* 12(34.3) 0(0.0) 10(28.6) 0(0.0) 12(34.3) 1(8.3) (45.7) 2(16.7) 0.149* Being avoided by family members 6(17.1) 0(0.0) Received negative comments from family members during relapse of the illness 19(54.3) 2(16.7) 0.024** *Yates continuity correction **Pearson chi-square Discussion Consistent with previous studies (9, 11), we found that patients with psychiatric illness were more likely to report the experience of stigma compared to patients with diabetes. This is despite that both mental illness and diabetes mellitus are chronic and treatable diseases. Hence, it can be deduced that stigma appeared to arise out of the psychiatric label and not the presence of a chronic illness. Stigma towards patients with psychiatric illness is widespread both in western (2, 7, 12) and non-western countries (6, 11). Evidence that stigma in mental illness 5

6 prevails in the Malaysian population continues to accumulate (13-17). It has previously been reported that stigmatizing attitudes can be reduced by increasing personal contact with patients suffering from psychiatric illness (18, 19).. On the contrary, our findings have shown that those most frequently in contact with these patients could also be significant sources of stigma. This was evident in this study as higher proportions of patients with psychiatric illness reported experience of stigma from family members for all of the items, compared to patients with diabetes. Although only negative comment from family members was the only item significantly associated with patients suffering from psychiatric illness, the non-significant associations for other items could be explained by small sample size. Nevertheless, this negative comments from family members is also known to be one of the main components of expressed emotion. Phillips et al, 2002 (20) have found that there is a strong relationship between stigma and expressed emotions. The causal link is uncertain. While stigma magnifies the family s expression of expressed emotions (21), having low expressed emotion leads to constructive responses to stigma by the family (22). There are several published studies exploring the problems of stigma arising from family members (6, 10, 23). Some studies assessed stigma by interviewing either the patient (9) or their family members (10, 24), while other studies assessed stigma by interviewing both parties. Despite methodological differences, the findings point to similar conclusion, ie stigma arising from family members is a significant problem. In fact, this stigma had existed even from the first psychiatric hospitalization (10). Malaysian families embrace the collectivist culture where group needs are prioritized over individual needs. In collectivist culture, relatives are expected to look after an individual in exchange for conforming to the group norms (25). Hence, one would have thought that living in a collectivist culture would be protective for a patient suffering from psychiatric illness. On the other hand, it has been shown that the stigma is not only attached to the individual, but inevitably extends to the rest of the family (26, 27). Such experience known as courtesy stigma (24) or associative stigma (28) would lead to an even more negative perception particularly in a society where acceptance to the group is vital. A central area of social discrimination experienced by patient and family members would be related to marriage. Not only patients chance of getting married is being limited, the likelihood is also reduced for other family members due to fear of genetic transmission to offspring (6). Hence, social isolation experienced by the family unit as a result of stigma is in turn demonstrated by projection of anger towards the patient (9). Apart from anger, family members of the psychiatric ill patient harbor feelings of shame and guilt (29, 30). In parents who attribute the psychiatric illness to psychosocial factors, self-blame is expressed from practicing poor parenting skills on their mentally ill child. However, parents who understood the biological explanation for psychiatric illness blamed themselves for possibly contributing genes responsible for the 6

7 illness. Family members also go through grieving process for the lost of a healthy individual (29-33). Grieving for an apparent loss can be difficult to express. Such grief which is publicly unrecognized has also been referred to as disenfranchised grief (34). Suppressed grief leads to prolong suffering in the family members. The points presented above are possible explanations to the phenomenon where family members, who are victim of stigmatization themselves, eventually become stigmatizers to the mentally ill patient. Hence, management of stigma among family members is an essential step in promoting recovery of people with mental illness. The acceptance of family members towards patient s illness would contribute to more effective care and encourage recovery. In Malaysia, nationwide structured family psychoeducation programs have been ongoing for the past eight years (35). It would useful to study whether this intervention has been effective in reducing the stigma among Malaysian family members. Limitations There are a few limitations to this study. Firstly, this study was carried in one hospital and two primary health clinics; the generalizability of the results is therefore limited. Secondly, recall bias particularly among patients with psychiatric illness could have affected the responses. Thirdly, the administration of the questionnaires was not standardized as some had to be interviewed while others completed the questionnaire as self-report. Thirdly, the suitability of diabetics as controls can be argued. Although both illnesses were similar with respect to being physical illness and chronic; they were from different systems of the body. Perhaps a more suitable control would be illnesses that effect the nervous system and have a similar age of onset and chronicity i.e. epilepsy. Furthermore, as the controls were unmatched, several demographic variables between the two groups were significantly different. Thus we recommend that the controls are matched for age, gender, race and duration of illness in designing future studies. Conclusion Family members are significant source of stigma to the patient with mental illness. Both, patients and family members suffer silently when such problem is overlooked. Hence, future studies to assess the effectiveness of ongoing Malaysian family intervention program in reducing stigma among family members are needed. Acknowledgements The authors would to thank Dr. Riana Abd Rahim (Consultant Psychiatrist, Hospital Taiping), Dr. G. R. Letchuman (Head of Department, Department of Internal Medicine, Hospital Taiping), staff of the respective study sites for their support in making this study possible. References 1. Corrigan P. How stigma interferes with mental health care. Am Psychol. 2004;59(7): Pinfold V, Toulmin H, Thornicroft G, Huxley P, Farmer P, Graham T. Reducing psychiatry stigma 7

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