Self-stigma in people with bipolar disorder based on their real sense of acceptance from their family

doi:10.21203/rs.3.rs-4671830/v1

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Self-stigma in people with bipolar disorder based on their real sense of acceptance from their family

https://doi.org/10.21203/rs.3.rs-4671830/v1

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Background: Although efforts have been made to reduce discrimination against people with disabilities, stigma regarding mentally disabled people still exists and significantly impacts treatment success and their way of life.This study aimed to determine how a patient’s sense of acceptance from their family influenced self-stigma, the patient’s treatment, and social life by asking several questions about their demographics and feelings. Based on these results, we discussed effective interventions for self-stigma reduction and social integration in patients with bipolar disorder based on our results.

Results: Of the 131 respondents, 127 were included in the analysis. Multiple logistic analysis revealed that for patients with bipolar disorder, having a sense of acceptance from their families was related to self-stigma intensity, and self-stigma was weakened when the patient felt accepted by the family. Furthermore, in those who felt a sense of acceptance from their families, the odds ratio was 11 times higher for those who disclosed the illness to their partners and 5.7 times higher for those who disclosed the illness to their siblings than for those who did not feel a sense of acceptance from their families. Conclusions: To reduce self-stigma in patients with bipolar disorder, they need to obtain a sense of acceptance from their families. Furthermore, to help their families accept the patient, we should provide family care tailored to their respective positions and ways of interacting with their affective family.

bipolar disorder

self-stigma

the Self-Stigma of Mental Illness Scale

family acceptance

treatment success

According to the United Nations, establishing a society without discrimination across borders and cultural differences is a major goal (United Nations General Assembly 2015). Japan has made some efforts toward reducing discrimination against people with disabilities through a legal landscape, such as the “Act for Eliminating Discrimination against Persons with Disabilities,” which took effect in 2013 (Cabinet Office and Government of Japan 2013). Despite these initiatives, discrimination and prejudice against people with mental illness still exist and have a significant impact on the success of their treatment or their way of life. According to previous research, poor medication adherence and an increase in suicides are caused by people with mental illness feeling discriminated against in society (Kamaradova et al. 2016; Oexle et al. 2017).

Unfair treatment based on negative or erroneous perceptions of persons with disabilities, including mental disabilities, is called stigma (Goffman 1963). Stigmas surrounding mental illness and disability can be broadly divided into several types. One is the public stigma against people with disabilities by those around them, and the other is self-stigma, which is caused by people with disabilities internalizing public stigma (Corrigan and Watson 2002). Stigma research among people with mental disabilities has been conducted internationally, and analyses of the relationship between education, occupation, duration of illness, number of hospitalizations, psychiatric symptoms, and self-stigma, or interventions to reduce stigma, have also been discussed (Dubreucq et al. 2021).

However, the above studies have evaluated them by combining all mental disorders together; even if differentiated by illness, they have mostly focused on patients with schizophrenia, a trend similar to that in Japan and other countries (Gerlinger et al. 2013; Tomomi et al. 2020). In studies comparing the intensity of self-stigma in each illness, it has been suggested that the strength of self-stigma varies by illness type (Kumar et al. 2020); therefore, we can infer that the results cannot necessarily be applied to patients with other illnesses if the investigation is about mental disorders in general or specific disorders only. In addition, although studies have been conducted to suggest the presence of those who support patients, such as whether patients live with their families and their association with social support, as a factor affecting self-stigma intensity (Kumar et al. 2020; Shumet et al. 2021), they have only considered physical support in the patient’s living environment. This study allows us to understand the link between a patient’s actual emotions and self-stigma. However, because self-stigma comprises a mentality and sense of values through which patients discriminate against themselves, it is necessary to focus on not only its relevance with objective information but also the living environment from the patient’s point of view, as well as on their real-life emotions, which determine whether or not they feel accepted in their surroundings. The results of this study are expected to contribute to the development of patient support measures that increase the patients’ willingness to seek treatment and treatment remission rates.

Our study was conducted on patients with bipolar affective disorder, which is considered to have a stronger stigma than mood disorders discussed in previous studies (Lazowski et al. 2012). This study aimed to determine how the patient’s own sense of “acceptance from family” influenced self-stigma, the patient’s treatment, and social life. Based on these results, we discussed effective interventions for self-stigma reduction and social integration in patients with bipolar disorder.

Target population and eligibility criteria

Our target population included patients who were 20 years and older, psychiatric outpatients of St. Marianna University Hospital or St. Marianna University Yokohama Seibu Hospital, had at least three months pass since the attending physician diagnosed them with bipolar disorder, and who consented to this study. Data with no missing values were included in the analysis.

Instruments

1. Questions asking about the participants’ demographics and real feelings (nine items):

Age (years), sex (male, female, other), age at initial psychiatric visit (years), number of psychiatric hospitalizations, employment (full-time employment, part-time employment, unemployed), whether or not they live with family, marital status (single, married), family member to whom the patient discloses the illness, and whether or not they have a sense of acceptance from family.

2. Japanese version of the Self-Stigma of Mental Illness Scale (JSSMIS) (40 items): This scale is a Japanese version of the scale proposed by Corrigan et al. (2006), which includes ten questions each on four levels of self-stigma: stereotype awareness, stereotype agreement, self-concurrence, and self-esteem decrement. It is the only measure that can be used to evaluate each level of self-stigma (Kuniyoshi and Etsuko 2013).

Analysis

The analysis was performed using JMP Pro 16.2.0. The duration of illness was defined and calculated as the age at the time of the survey minus the age at the initial visit to the psychiatry department. After calculating descriptive statistics for each variable, multiple logistic analyses were conducted on the relationship between sex, number of psychiatric hospitalizations, employment, family members to whom the patient disclosed the illness, duration of illness, JSSMIS scores, and whether or not the patient had a sense of acceptance from their family. Sex was used as an adjusted variable. Odds ratios (ORs) and 95% confidence intervals (CIs) were calculated for the presence of a sense of acceptance from family members at a significance level of 5%.

Ethical Considerations

This study was approved by the St. Marianna University Clinical Trials Subcommittee (approval nos.: St. Marianna University Hospital No. 6027 and St. Marianna University Yokohama Seibu Hospital No. 1087). The participants were informed about the study orally and in writing by the researcher, and written informed consent was obtained from all participants. For any respondent, a withdrawal period of at least 30 days was allowed.

Figure 1 demonstrates the process of selecting participants for analysis. There were 182 patients on medical records. Among them, patients who did not visit the hospital (n = 11), who had symptom exacerbation on the survey date (n = 28), and who disagreed to participate in this research (n = 12) were excluded, and written informed consent for research cooperation was obtained from 131 participants. Of these, 127 were included in the analysis, after excluding one person who withdrew consent and three who could not complete their answers.

The characteristics of the analysis participants are presented in Table 1. This study included 51 men and 76 women. The mean age of the participants was 54.2 ± 15.9 years. The mean age at the initial psychiatric visit was 35.2 ± 13.0 years. Employment status was full-time for 22, part-time for 17, and unemployed for 88 respondents. Regarding their living situation, 99 were living with family members, whereas 28 respondents were either living with non-family members, in institutional care, or alone; approximately 80% of the respondents were living with family members. In this context, family refers to parents, siblings, spouses, children, and other relatives. Regarding marital status, 49 respondents were unmarried, divorced, or widowed at the time of the survey, and 78 were married, corresponding to approximately 60% of all respondents. The average duration of illness was 19.0 ± 11.4 years. The average number of psychiatric hospitalizations was 1.4 ± 2.1. Regarding illness disclosure, 68 disclosed their illness to their parents, 74 disclosed their illness to their siblings, 78 disclosed their illness to their partners, and 73 disclosed their illness to other family members.

Table 1

Sociodemographic and clinical characteristics of all the analysis participants
Variables		N (%) or Mean ± SD
Gender	male	51(40.2)
	female	76(59.8)
Age (in years)		54.2 ± 15.9
Age of initial psychiatric visiting (in years)		35.2 ± 13.0
Employment	full-time	22(17.3)
	part-time	17(13.4)
	unemployed	88(69.3)
Living with family	Yes	99(77.9)
	No	28(22.0)
Marital status	single	49(38.6)
	married	78(61.4)
Duration of illness (in years)		19.0 ± 11.4
Number of psychiatric hospitalizations		1.4 ± 2.1
Family member to whom the patient discloses the illness	parents	68(53.5)
	siblings	74(58.3)
	partner	78(61.4)
	Other family members	73(57.5)
Sense of acceptance from family		106(83.5)

Multiple logistic regression analysis was performed by dividing the patients into those with and without a sense of acceptance from their families. The results are summarized in Table 2. The total JSSMIS score was selected for analysis to examine the strength of self-stigma. We selected data items such as sex and employment status as demographic factors, duration of illness, and number of hospitalizations to objectively assess illness severity. In addition, “family member to whom the patient discloses the illness” was put in as an item representing the psychological distance between the patient and the family. Those with a sense of acceptance from their families had lower total JSSMIS scores, with an OR of 0.98. Furthermore, in those who felt a sense of acceptance from their families, the OR was 11 times higher among those who disclosed the illness to their partners and 5.7 times higher among those who disclosed the illness to their siblings than among those who did not feel a sense of acceptance from their families. No association was found between sex, employment status, duration of illness, number of psychiatric hospitalizations, or disclosure of illness to parents.

Table 2

Multiple logistic regression analysis of the feeling of “being accepted by the family”
Variables	Odds ratio	95%Cl	p
JSSMIS total score	0.98	0.97–0.99	0.0018*
Notifying of their illness (sibling)	11.56	2.38–56.26	0.0024*
Notifying of their illness (partner)	5.79	1.68–19.97	0.0054*
Illness duration	0.94	0.88-1.00	0.0592
The number of hospitalizations	1.31	0.94–1.81	0.1079
Notifying of their illness (parents)	0.32	0.07–1.47	0.1444
Employed	0.50	0.13–1.89	0.3098
Gender	1.58	0.42–6.01	0.5019
Notifying of their illness (others in their family)	1.07	0.32–3.63	0.9075

It was revealed that, for bipolar patients, feeling a sense of acceptance from their families was related to self-stigma intensity. These results were consistent with those assumed in the research question for this study in the sense that the patient’s feeling is what has the greatest impact on self-stigma. Moreover, a new finding of this study was that the relationship between disease disclosure and a sense of acceptance from the patients’ families varied by family member; who in the family was receptive could also have a significant impact on self-stigma. This was a surprising result that was not assumed.

Relationship between sense of acceptance from family and self-stigma

It was revealed that, for bipolar patients, feeling a sense of acceptance from their families was related to self-stigma intensity and that self-stigma was weakened when the patient felt accepted by the family. Other studies have shown that self-stigma increases when self-esteem decreases (Shumet et al. 2021). Taking this into account, we considered the following results of this study: When patients feel that their existence is recognized in their family as a small society, they maintain a sense of self-affirmation, which contributes to a reduction in self-stigma. Other studies have found a negative correlation between caregivers’ time spent with patients and self-stigma (Grover et al. 2019). Patients who feel a sense of acceptance from their families have lower self-stigma and are more likely to share time and emotions with them, which also reduces stigma on the part of caregivers and creates a more stable family foundation. Thus, we observed a positive cycle between patients’ self-stigma reduction and their sense of acceptance from their families. Meanwhile, it has been shown that self-stigma is stronger among patients with mood disorders who live with their families than among those who live alone (Ihalainen et al. 2022). Other studies have suggested that families with social support tend to have a better understanding of their patients (Priasmoro et al. 2023).

Therefore, the patient’s feeling of relief and satisfaction regarding the statement and sentiment “My family can accept me as a member of our family” contributed to reducing the patient’s self-stigma. We believe that it is important for the patient’s family to receive adequate social support beyond the mere objective of cohabitation. Furthermore, we expected that the patients, especially those whose family members were receptive to them, may influence their own self-stigma. Our study also examined the association between family members’ disclosure of their illness and their sense of acceptance from the family, the results of which are discussed below.

Sense of acceptance from family and family member to whom the patient discloses the illness

Partners are often the closest supporters of patients. The present results revealed that being able to disclose their illness to their partners was associated with the respondents’ sense of acceptance from their families; the OR for disclosing their illness to their partners was 5.7 times higher when there was a sense of acceptance from the family. The partner would become the closest companion in their fight against the illness, so to speak, and avoid the mental isolation of the patient. Patients’ disclosure of their illness to their partners whom they communicate with most frequently in their daily lives leads to a great feeling of security for the patients themselves and improves their motivation for treatment by enabling them to share their treatment goals with their partners. Furthermore, there was an association between patients’ disclosure of their illness to their siblings and feelings of acceptance from the family. When patients felt a sense of acceptance from their family, the OR of illness disclosure to their siblings was 11.56 times higher than that of illness disclosure to a partner.

Compared with Europe and the United States, family is generally considered more important in Asia (Wong et al. 2018). This results in a social problem wherein the public forces the patients’ families to take on the role of caretakers through laws and other social systems in Japan. In particular, siblings may have to take on the sole role of patient support when their parents become older adults. According to a report by the Ministry of Health, Labor and Welfare, siblings accounted for 15.5% of the family members who consented to treatment on behalf of their patients (Ministry of Health, Labour and Welfare and Government of Japan 2022). In actual clinical practice, when a patient develops an illness at a young age, it is most likely that their siblings are also young; therefore, in many cases, siblings take on the role of patients’ caretakers without the opportunity to fully understand the illness of their affected siblings. In a study that interviewed family members living with mental disabilities, participants revealed that they experienced limited life choices and rejection by society because they were forced to be the patient’s supporters, for example, by avoiding marriage to take care of the patient (Latifian et al. 2022). Families not only take care of their patients but also fight discrimination from the public together with the patients. We believe that when siblings can overcome difficulties and build trusting relationships with each other, patients can disclose their illnesses to their compatriots. When siblings, who have grown up together with the patients—whether with or without mental disorders—become truly understanding of each other, they act as a brake on the process of building up self-stigma in the patient’s mind.

This study suggests that family members, especially siblings and partners, affect patients’ feelings of acceptance by their families. Therefore, it is important to provide treatment and support not only to the patient but also to their family members, while considering their respective positions.

About other items

While other studies have indicated that the duration of illness, employment status, and number of hospitalizations affect self-stigma (Ihalainen et al. 2022), in this study, no association was found between these items and feeling accepted by one’s family. The reason for this is discussed below as a limitation of the study; however, we cannot rule out the possibility that no significant association was found because of the small sample size. Moreover, in studies on factors associated with self-stigma, many have proceeded without distinguishing between types of mental disorders, and bipolar patients often represent only a small percentage of study participants. Hence, this does not necessarily reflect the reality in patients with bipolar disorder. This study revealed that “whether or not the patient feels accepted by their family” has a greater impact on self-stigma than social life circumstances such as employment status, duration of illness, or number of hospitalizations. However, it is possible that the differences in the duration of illness and number of hospitalizations may not be significant in this study because some family members may have more negative feelings toward the patient as the duration of illness increases, whereas others may be more accepting. However, it is precisely when a family spends more time functioning as a support system that healthcare professionals provide stronger support to the family to encourage patient acceptance, which would, in turn, lead to a reduction in patients’ self-stigma.

Limitations

The limitations of this study are as follows: First, only those who were able to attend outpatient clinics at the university hospital and its affiliated medical institutions were included in the study, making it a small sample in terms of the number of qualifying participants. Second, because of the above reason, it was not possible to classify and analyze the patients by stage of illness. Third, self-stigma was measured only in the form of a numerical expression of the patient’s feelings using an existing scale to reduce the burden of responding to the questionnaire, which may have resulted in not reflecting emotionally fraught experiences that cannot be expressed numerically.

Therefore, a large-scale study would allow us to conduct more real-world clinical investigations in the future. Moreover, to propose support measures that are even more attuned to the emotional needs of patients, it is necessary to adopt a format that allows the survey to reflect patient self-stigma, which cannot be quantified, by providing a free-text field or by conducting an interview survey in which respondents can speak freely after the questionnaire survey.

It was found that feelings of acceptance from their families were strongly associated with the intensity of patients’ self-stigma and incidence of illness disclosure by family members in patients with bipolar disorder. In addition, it was revealed that, even among family members, different relations to the patients had different effects on patients’ emotions and self-stigma. It is important not only to support the patient but also to support and care for the family members, especially partners and siblings who support the patient according to their respective positions. We believe that our efforts to help patients with bipolar disorder and their families throughout society will ultimately help alleviate the emotional distress of bipolar patients in their social lives.

CI: confidence interval

JSSMIS: Japanese version of the Self-Stigma of Mental Illness Scale

OR: odds ratio

Ethics approval and consent to participate

The studies involving human participants were reviewed and approved by the St. Marianna University Clinical Trials Subcommittee (approval nos.: St. Marianna University Hospital No. 6027 and St. Marianna University Yokohama Seibu Hospital No. 1087). The patients/participants provided their verbal and written informed consent to participate in this study.

Consent for publication

Not applicable.

Availability of data and material

The datasets used and/or analyzed during the current study are available from the corresponding author upon reasonable request.

Competing interests

The authors declare that they have no competing interests.

Funding

Not applicable.

Authors’ contributions

LS, KA, and YK were involved in the planning of the study. LS collected, analyzed, and interpreted patient data. LS authored this paper and KA was a major contributor in writing the manuscript. LS, KA, and HK reviewed the considerations of this study. The corresponding author is KA. All authors read and approved the final manuscript.

Acknowledgments

The authors would like to thank all participants, the hospitals, and medical personnel who supported this research design and data collection. They are also grateful to the reviewers of a previous version of the manuscript for their helpful comments.

Authors' information (optional)

LS is a psychiatrist and a graduate student who belongs to St. Marianna University School of Medicine

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No competing interests reported.

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Self-stigma in people with bipolar disorder based on their real sense of acceptance from their family

Status:

Version 1

Abstract

Figures

Background

Methods

Target population and eligibility criteria

Instruments

Analysis

Ethical Considerations

Results

Discussion

Relationship between sense of acceptance from family and self-stigma

Sense of acceptance from family and family member to whom the patient discloses the illness

About other items

Limitations

Conclusion

Abbreviations

Declarations

References

Additional Declarations

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