Stigma and mental health awareness among caregivers of patients with bipolar affective disorder

INTRODUCTION

Bipolar affective disorder, previously known as manic depression, is a mental disorder that causes periods of depression and periods of abnormally elevated mood. The elevated mood is significant and is known as mania or hypomania, depending on its severity, or whether symptoms of psychosis are present.¹ Bipolar affective disorder is the sixth leading cause of disability worldwide and has a lifetime prevalence of about 1 to 3 percent in the general population.²

Stigma is defined as negative appreciation of an individual based on some derogatory attributes from which other negative characteristics are inferred.³ Stigma is a serious concern for individuals with bipolar affective disorder and their families. Stigma occurs within affected individuals, families, social environments, work and school environments, and the healthcare industry. Stigma often leads to a loss of social support and occupational success, reduced functioning, higher symptom levels and lower quality of life. There is considerable evidence indicating that bipolar patients and their families are shunned by society at all levels which further deteriorates the quality of life as well as social functioning.⁴

Having a patient with mental illness in the family often lead to caregivers either hiding the affected individual or avoiding any interaction with people, thereby leading to isolation and further development of mood symptoms in them. Taking care of affected patients is a full-time task which is physically, emotionally and financially draining for the caregivers. This may further lead to development of psychiatric conditions in the caregivers further deteriorating the family functioning as a whole.

Usually stigma is based on a lack of information and understanding about the illness. Being well informed about bipolar affective disorder can help to recognize some of the misconceptions involved in stigma.⁵ Information about bipolar affective disorder should be dispersed in the community by educating them that bipolar affective disorder is a health condition like any other disease example, diabetes, hypertension etc., and not a flaw in personality. Also, while certain illness-related behaviors might be socially unacceptable, these behaviors are symptoms of a treatable illness.⁶

There have been limited number of studies on bipolar affective disorder in India due to low prevalence of disease in the country. Moreover, the poor awareness and stigma regarding psychiatric illnesses have further reduced the number of individuals and their families seeking treatment for their symptoms. This has led to even more scarcity in the studies conducted on the awareness of bipolar affective disorder as well as stigma faced by the patients and their caregivers in general.

METHODS

This cross-sectional observational study titled “Stigma and mental health awareness among caregivers of patients with bipolar affective disorder” was conducted in the Department of Psychiatry, Era’s Lucknow Medical College and Hospital, Lucknow, Uttar Pradesh, India for a period of 18 months from January 2018 to June 2019 after obtaining approval from the Institute’s ethical committee.

90 caregivers of patients with bipolar affective disorder according to the International Classification of Diseases 10th revision (ICD-10) were recruited in this study. Study subjects were also assessed for socio-demographic details and related variables. The selected tools for this study were applied on the study subject on the same day or on some other mutually consented day by the investigator.

The following were tools of assessment for bipolar disorder used in the study: consent form; socio-demographic data sheet and; specific tools of assessment- which included affiliate stigma scale on caregivers of people with mental illness and public perception of mental illness questionnaire.

Affiliate stigma scale on caregivers of people with mental illness

A 22 item scale to measure caregivers internalized stigma. The scale items measure the cognitive, affective and behavioral component of affiliated stigma. Participant related to extent to which they endorsed each item on a 4-point scale from strongly disagree to strongly agree.^1,4,7,8

Public perception of mental illness questionnaire

This instrument had 33 items that measured mental health literacy of the participants regarding etiology of mental illness, knowledge of people with mental illness, attitude toward the people with mental health problem and management of people with mental health problem. Answer are coded on 5-point scale from agree to disagree.⁹

Inclusion criteria

The inclusion criteria for the study was as follows: age 16-60 year, caregivers of patients confirming to bipolar affective disorder according to guidelines laid down by ICD-10 and caregiver giving informed consent.

Exclusion criteria

The exclusion criteria for the study was as follows: caregivers with co-morbid psychiatric illness, caregivers not in contact with the patient on a daily basis and caregivers with mental and behavioral disorder due to psychoactive. substance use.

Statistical analysis

Data entry was made in Microsoft office excel software in codes and analysis was done by Statistical package for social sciences (SPSS) software® version 18.0. Descriptive statistical analysis, which included frequency, percentages, mean and standard deviation was used to characterize the data. Student’s unpaired t-test, Mann Whitney test and chi square tests was applied to check association and difference.

RESULTS

In the study, it was observed that the maximum number of caregivers (71.1%.) belonged to the age group 16-30 years. 23 (25.6%) were aged 31-50 year and 3 (3.3%) were above 50 years. 55 caregivers (61.1%) were females and rest 35 (38.9%) were males.

13 caregivers (14.4%) were uneducated, while 20 (22.2%) had High school level education and only 5 (5.6%) had education of graduation level or above. Majority of the caregivers (51.1%) had income more than 10000 (Table 1).

Analysis of the affective dimension of affiliate stigma scale on caregivers with the help of chi square test shows significant value for (1) of the 7 items given in the table above. The difference between the number of people agreeing and disagreeing in their opinion was significant for item number 1 (p<0.001) (Table 2).

Analysis of the cognitive dimension of affiliate stigma scale on caregivers with the help of chi square test shows no significant inference regarding any of the items on the list (items 8-14) (Table 3).

Analysis of the behavioural dimension of affiliate stigma scale on caregivers with the help of chi square test shows significant difference between the number of respondents who agreed and those who strongly agreed regarding item 19 and 21 on the list above (p=0.007 in both cases) (Table 4). An application of Mann Whitney test to analyse the association of various domains of caregiver’s stigma suggests significant difference between mania and depression subjects regarding alienation (p<0.001), stereotype endorsement (p<0.001) and discrimination experience (p<0.001). In all the domains and the overall score in patients with mania was significantly more than in the patients with depression (Table 5).

An application of Mann Whitney test to analyse the association of various domains of caregiver’s stigma suggests significant difference between mania and depression subjects regarding alienation (p<0.001), stereotype endorsement (p<0.001) and discrimination experience (p<0.001). In all the domains and the overall score in patients with mania was significantly more than in the patients with depression (Table 5).

The overall stigma score of caregivers was found to be 18.50±1.75 for affective domain, 17.63±2.57 for cognitive domain, 23.44±3.05 for behavioural domain and the total score was 59.57±7.54. The maximum score was found for Behavioural domain (Table 6).

Statistical analysis of public perception of mental illness using chi square test suggests a significant difference of opinion regarding its causes. The most significant difference (p<0.001) in the opinion of respondents was found with regards to the questions that the mental illness is caused by heredity, substance abuse, personal weakness or by God’s decree (Table 7).

Pointers pertaining to the understanding of people with mental illness were analyzed by chi square test. A significantly high (p<0.001) variation in the opinion existed regarding the question that mentally ill people can work. Opinion also varied significantly (p<0.05) over the queries entered in the first, fifth and sixth row of the Table 7.

A chi square analysis of the data about general attitude toward mentally ill people showed a highly significant variation (p<0.05) in 10 of the 12 questions put before the subjects (Table 7).

DISCUSSION

Stigma is a serious impediment to the well-being of those who experience it. Many family-caregivers are challenged by the stereotypes and prejudice that result from misconceptions about bipolar affective disorder.

In our study, the analysis of the affective dimension of affiliate stigma scale on caregivers showed significant value for emotional disturbance and pressure due to care of bipolar affective disorder diagnosed patient. The difference between the number of people agreeing and disagreeing in their opinion was significant towards the feeling of inferiority and behavior changes.

Similar results were observed by Marimbe et al (and Zhou et al in regard to the caregivers of bipolar affective disorder patients.^10,11 All these studies observed significant results in emotional disturbance, inferiority complex and mental pressure in taking care of bipolar patient.

However, Grover et al in their study gave contrasting observations to our study by hypothesizing that caregivers in bipolar affective disorder have lesser disruption of routine family activities and lower impact on the mental health of others.¹²

In our study we observed that majority of caregivers were female and association of various domains of caregiver’ stigma suggested significant difference between mania and depression subjects regarding alienation (p<0.001), stereotype endorsement (p<0.001) and discrimination experience (p<0.001).

Though most of the caregivers were females as observed in the studies of Chatzidamianos et al, Ellison et al, Imran et al, there was no association between alienation, stereotype association seen in the studies.^13-15 However, discrimination was seen to be having a significant association among the caregivers of the mentally ill patients as in most of the studies observed.

Our study analyzed public perception of mental illness and it suggested a significant difference of opinion regarding its causes. The most significant difference (p<0.001) in the opinion of respondents was found with regards to the questions that the mental illness is caused by heredity, substance abuse, personal weakness or by God’s decree. A significantly high (p<0.001) variation in the opinion existed regarding the question that mentally ill people can work. Opinion also varied significantly (p<0.05) towards the factors whether the mentally ill person is dangerous, can a mentally ill person be friended and whether the illness is contagious or not. Analysis of the data about general attitude toward mentally ill people showed a highly significant variation (p<0.05) in regard to family, friendship, marriage and job.

Sessions et al, Chatzidamianos et al and Brohan et al have demonstrated in their studies about the social problems and public perception toward patient of mental illness and their caregivers.^13,16,17 Community stakeholders expressed concerns regarding the idea of individuals with mental health issues being treated in the community. They also frequently expressed their belief that the hospital was the appropriate place for those with mental illness to receive treatment before returning to their communities. There were three factors identified that influenced accessibility namely: pre-existing worldviews, the quality of relationships and of communication between those involved, and specific structural impediments. In a reduced multivariate model, 71.6% moderate or high perceived discrimination was seen among people with a diagnosis of bipolar affective disorder or depression, accounted for by levels of empowerment, perceived discrimination, number of areas of social contact, education and employment.

There was significantly high relationship towards the view whether mentally ill person should marry and have families. In our study, there was a significant association between people who agreed to the fact that mentally ill patient should have family vs. those who opposed it. A significant number responded that the mentally ill patients should avoid marrying and starting family.

Similar to our study, Aljedaani, Bassirnia A et al also observed a negative attitude towards mentally ill patients marrying and starting a family.^18,19 While in study of Aljedaani et al there was significant association between mental illness and danger to society, in study Bassirnia et al, caregivers and family members were indirectly affected with mental illness while taking care of the patient.

CONCLUSION

Our study not only aims at raising the possible questions regarding stigma associated with mental illness but also gives us a larger picture about how prevalent it is in our society due to lack of awareness. As physicians, it is our duty to ensure awareness in public and provide assistance to such patients and their caregivers. This would not only improve the prognosis of patients but will also ensure their well-being, their acceptance in the society and compliance towards long-term treatment strategies.

Funding: No funding sources

Conflict of interest: None declared

Ethical approval: The study was approved by the Institutional Ethics Committee

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