|Ahead of print publication
Perceived stigma among caregivers of psychiatric disorders as compared to chronic dermatological disorders
Nishtha Gupta, Madhura Samudra, Sana Dhamija, Suprakash Chaudhury, Daniel Saldanha
Department of Psychiatry, Dr. D. Y. Patil Medical College, Dr. D Y PatilVidyapeeth, Pune, Maharashtra, India
|Date of Submission||26-Nov-2021|
|Date of Decision||18-Dec-2021|
|Date of Acceptance||30-Dec-2021|
Department of Psychiatry, Dr. D. Y. Patil Medical College, Dr. D Y PatilVidyapeeth, Pimpri, Pune, Maharashtra
Source of Support: None, Conflict of Interest: None
Background: Literally, stigma “is a mark of disgrace associated with a particular circumstance, quality, or person” which has an impact on the physical, social and emotional health of not just the patient but also their caregivers. There is a paucity of research assessing the prevalence and impact of stigma among the caregivers of these patients. Aim: To assess the perceived stigma among caregivers of psychiatric disorders as compared to chronic dermatological disorders. Materials and Methods: By purposive sampling, 60 patients with psychiatric disorders and 60 chronic dermatological disorders were included in the study with their written informed consent. For diagnosis of psychiatric disorders International Classification of Diseases 10 Diagnostic Criteria for Research criteria was used. The diagnosis of dermatological disorders was made by the dermatologist. Patients with chronic visible dermatological disorders were selected. The caregivers of the patients after informed consent were included in the study. Their sociodemographic proforma was filled, and then Discrimination and stigma scale (DISC) and Explanatory Model Interview Catalogue (EMIC) stigma scale were applied to the two groups. The scores were analyzed using the SPSS. Results: Caregivers of patients with psychiatric disorders had significantly higher scores compared to caregivers of chronic dermatological disorder patients on the EMIC and DISC scales. Conclusion: Perceived stigma was found to be high in caregivers of both patients of psychiatric disorders and chronic dermatological disorders. It was seen that the stigma was higher in the caregivers of patients with psychiatric disorders.
Keywords: Caregivers, dermatological disorders, discrimination and stigma scale, explanatory model interview catalog (stigma scale), perceived stigma, psychiatric disorders
|How to cite this URL:|
Gupta N, Samudra M, Dhamija S, Chaudhury S, Saldanha D. Perceived stigma among caregivers of psychiatric disorders as compared to chronic dermatological disorders. Med J DY Patil Vidyapeeth [Epub ahead of print] [cited 2022 Dec 7]. Available from: https://www.mjdrdypv.org/preprintarticle.asp?id=339188
| Introduction|| |
Stigma is a social construct marked by devaluing a person due to his/her disfigurement or disability to fulfill their social role. It is a discrediting word that differentiates and sets a person off from others and alters interaction with them. Stigma has an impact on the physical, social and emotional health of the patient and their caregivers. People with mental illness often struggle with the disease and the burden of stigma more than those who suffer from dermatological illnesses where the lesions are visible on the body. Data does support the finding that stigma limits the use of services. Perceived stigma is fear of being discriminated against or the fear that arises from society's belief. Stigma contributes to low self-esteem for both the patients and the caregivers. It also adversely affects the relationship between them, which impacts the outcome of the illness. A few recent studies have evaluated the impact of skin diseases on the psychological wellbeing of the patients due to the associated stigma and how it affects their quality of life.
A number of studies in the past have reported that caregivers of patients of psychiatric illness suffer from stigma, which impedes the identification, management and rehabilitation of the patients. It is less well known that even caregivers of chronic dermatological disorders also suffer from stigma. No research has compared the perceived stigma among those who care for the patients in the two groups. The present study is an attempt to fill the gap in the perceived stigma research of caregivers of psychiatric illness as compared to patients with chronic dermatological illnesses. The study addresses perceived stigma amongst caregivers of psychiatric disorders and caregivers of patients suffering from chronic dermatological disorders mostly with visible skin lesions/pigmentation such as atopicdermatitis, acne, vitiligo, psoriasis, and leprosy.
| Materials and Methods|| |
This cross-sectional study was carried out in a tertiary care hospital and research center with a medical college in a suburban area of western Maharashtra during July 2019 to July 2021.Clearance from the institutional ethics committee was obtained before starting the study (Letter no FP/2019/28 dated September 16, 2019). Written informed consent was obtained from every subject enrolled for the study.
By purposive sampling, sixty caregivers of patients with psychiatric disorders and 60 caregivers of patients with chronic dermatological disorders meeting the inclusion and exclusion criteria given below were included in the study.
Inclusion criteria for the study
- Caregivers of patients diagnosed according to International Classification of Diseases 10 Diagnostic Criteria for Research with a psychiatric disorder or dermatological disorder with a visible skin lesion
- Duration of illness >2 years
- Above 18 years of age
- Those who were willing to give consent for the study.
Exclusion criteria for the study
- Age <18 years
- Any significant chronic medical illness/co morbidity.
A specially designed pro forma was used to document background details and sociodemographic profile of the caregivers of patients with psychiatric and dermatological disorders.
Discrimination and stigma scale
Discrimination and stigma occur when people are treated unfairly because they are seen as being different from others. The interview is how one has been affected by discrimination and stigma. There are four parts to this interview. Each part asks how one has been treated or what could have been done in different situations. In the first part, how he/she has been treated unfairly because of mental or dermatological health problems. In the second part, when they have stopped themselves from doing things because of others response to their mental or dermatological health problems. In the third part, how they may have overcome stigma and discrimination because of their health issues. In the fourth part, the number of times when they have been treated more positively because of their health issues. In each part of the interview whether each event has happened and scored as not at all (0), a little (1), moderately (2) or a lot (3). Internal consistency as a whole result a Cronbach alpha between 0.741 and 0.850. Subscales “Unfair treatmen” and “Positive treatment” have a Cronbach alpha higher than 0.79, but the both subscales “Stopping Self” and “Overcoming stigma” do not have in themselves an adequate consistency. Test-retest reliability shows that four subscales have values higher than 0.67. Interrater reliability assessment results that 21 items score values above 0.8, 10 between 0.6 and 0.8, and one lower than 0.6. Hence, Discrimination and stigma scale (DISC) 12 scale is valid, has good internal consistency, is reliable both in terms of test-retest and interrater reliability and has good convergent validity.
Explanatory model interview catalog scale
The Explanatory Model Interview Catalogue (EMIC) stigma scale is a 15-item instrument originally designed to measure stigma among leprosy-affected people. This study used the EMIC stigma scale to measure perceived stigma among caregivers of both chronic psychiatric and dermatological illness. “Leprosy” was replaced with “psychiatric/dermatological illness” in each question. Each question was measured with four options, which were “yes,” “possibly,” “uncertain,” and “no.” Scores were generated by assigning 3 points to “yes,” 2 to “possibly,” 1 to “uncertain,” and 0 to “no” for all questions except question 2, in which a reverse scoring method was employed. A composite score was obtained for each respondent by adding the scores of the 15 questions. A higher score implied a higher level of perceived stigma faced by the respondent. The internal consistency of the original scale is good, with a Cronbach's alpha coefficient of 0.79.
Complete details of the included patients and controls were recorded on a sociodemographic pro forma, containing all the relevant details. DISC and EMIC scales were applied to the two groups. The scales were scored as per the manuals.
Data were entered in Excel sheet. Statistical analysis was carried out using SPSS (IBM, Atlanta, Georgia, USA) with the help of both descriptive and inferential statistics. Data summarization was carried out with the help of percentages, and summary statistics were with mean, range, and standard deviation. Inferential statistics analysis was done using nonparametric tests (Chi-square test and Mann–Whitney U) at 5% significance.
| Results|| |
The present study included 60 caregivers of patients of psychiatric illness and an equal number of age and sex-matched caregivers of chronic dermatological illnesses [Table 1] and [Table 2]. The only difference was seen in the type of families in the caregivers of both groups was they had more nuclear families and were significantly more in patients with chronic dermatological illness [Table 1].
|Table 1: Demographic characteristicsof caregivers of psychiatric and chronic dermatological disorders|
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|Table 2: Frequency distribution showing age of patients with psychiatric and chronic dermatological illnesses|
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A significant difference was observed in Section 1 of DISC Scale, the scores being considerably higher in caregivers of patients of psychiatric illness [Table 3]. Section 2 also showed the scores of DISC Scale of both groups being higher in caregivers of patients of psychiatric illness. While there was no significant difference in Section 3 of DISC Scale of both groups, a significant difference was observed in Section 4 of DISC Scale, with the scores being considerably higher in caregivers of patients of dermatological illness [Table 3]. EMIC Scale showed the scores being considerably higher in caregivers of patients of psychiatric illness [Table 4], [Table 5], [Table 6], [Table 7].
|Table 3: Frequency distribution showing disc of caregivers of psychiatric and chronic dermatological illnesses|
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|Table 4: Frequency distribution showing emic score of caregivers of psychiatric and chronic dermatological illnesses|
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|Table 5: Explanatory model interview catalogue total score in caregivers of patients with psychiatric and chronic dermatological disorders|
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|Table 6: Multiple regression analysis to identify predictors of overall stigma through explanatory model interview catalogue in caregivers of dermatological illness: Coefficientsa|
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|Table 7: Multiple regression analysis to identify predictors of overall stigma through explanatory model interview catalogue scores in caregivers of psychiatric illness: Coefficientsa|
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| Discussion|| |
The study was undertaken to assess the perceived stigma among the caregivers of both psychiatric and dermatological disorders groups. There is a lack of research comparing the stigma in the caregivers in these two illnesses. The study is an attempt to fill the gap.
Our study showed that a significantly higher number of caregivers were unemployed in the group with chronic dermatological disorders [Table 1]. This is similar to findings of a study conducted in a leprosarium in Ghana, where being in close proximity to the patients affected their chances of being employed. In an Iranian study, it was observed that the burden was more on female caregivers because of increased responsibilities, and that added to them being stigmatized in the society. The present study had 49 from nuclear and 11 from extended families, with nuclear families being predominant in caregivers of chronic dermatological illnesses. The difference in the two groups was significant. A study conducted in Ranchi, India observed the expressed emotions (EE) of hostility and critical comments to be considerably higher in nuclear families than in joint families causing frequent relapses in the patients. While more studies are needed to further explore the psychosocial factors leading to this, it was observed that joint families lead to better outcomes in patients with psychiatric illness.
A majority of patients in both groups were unemployed [Table 2]. A survey in the UK with 500 British employers and showed that over 32% believed it to be a significant risk for the organizations to employ people with mental health problems. Lack of competence, dangerous behavior, difficulty in trusting with confidential information, behavior toward peers and other staff members, and constant need of supervision were said to be the reasons for this stigma. Two similar studies also found that in patients with schizophrenia and in patients with substance use disorder, 64% and 39%, respectively, had a similar experience in regard to applying for occupation, higher education, or training., A study in Agra, India regarding the challenges faced by families of patients with leprosy revealed that the interaction with community affected the patients of leprosy, and they experienced a reduction in opportunities for education and work. Because of the poor knowledge of the illness and its course, even their caregivers bear the burden of stigma and lack of opportunities. A recent study in India documented psoriasis impacted financial status of patients negatively. It was observed that it created a financial burden in patients because of the higher financial burden to look after the illness and more absenteeism from work because of illness.
Discrimination and/or stigma occur when people are treated either differently or unfairly. The DISC assessed the same and was applied in caregivers of patients of both psychiatric illness and chronic dermatological illnesses. In the first section of the scale, a significant difference was observed in the two groups with the score being considerably higher in caregivers of psychiatric illness [Table 3]. The finding is similar to a study in Chile which showed that the majority of caregivers of patients with Schizophrenia suffered from moderate to severe burnout, out of which a significant part was because of the stigma. Multiple reasons can be stated for this. Firstly, the knowledge of admission leads to more revelation of the illness. Moreover, the lesions in dermatological illness need not be visible specially in early stages or when early treatment is sought. Secondly, the efficacy of patients with mental illness is questioned more often along with their behavior at times in symptomatic stages which leads to stigma for their family members or caregivers. Third, it is only the visible external manifestations of a dermatological illness that causes stigma., A statistically significant number of caregivers stopped themselves from applying for work, training, higher education, stepping into close personal relationships, or hiding the illness of the patient while doing so or in other social situations [Table 3]. A few studies that included leprosy had results that were in accordance with our study.,,, Studies have not been conducted to calculate the relation of stigma in caregivers of psychiatric illnesses with their employment, and further research is needed in this segment.
A significantly higher proportion of caregivers of patients with chronic dermatological illnesses were found to have been treated more positively in various aspects of life [Table 3]. While no previous studies have been conducted that evaluated the other side of this, a few reasons can be thought of that support our results. These observations could be due to the varied nature of psychiatric illness and, sometimes, the bizarre and inappropriate behavior of the patients with psychiatric illnesses, as this also affects the relationship between the patients and their caregivers. Furthermore, lesions in dermatological illnesses can be hidden, which does not affect the lives of caregivers in the social or occupational domains. And if early treatment is taken, they may be limited to only mild symptoms. The second scale compared the overall perceived stigma among the caregivers, which was higher in caregivers of psychiatric illness. The studies considered have explored the presence of stigma in caregivers in both groups separately, but the research has not been thorough in comparing the same in the two groups. A few reasons could be the ease to keep a dermatological diagnosis a secret as compared to psychiatric illnesses which cause behavioral disturbances. While it was seen that the perceived stigma was more in the group with patients suffering from psychiatric illnesses, there needs to be further research regarding the connection between the two. The causative factors, predictors and mechanisms need to be explored further [Table 5]. A larger number of caregivers of the patients with psychiatric illness preferred keeping the illness discreet. Although the reasons for the same have not been researched thoroughly in the past, the previous studies have suggested high perceived stigma toward those with mental illness, attributing it to the misconceptions about mental health situations. Previous studies also suggested that the nature and causative factors of mental illnesses have been contributed to supernatural forces, and prayers have been the way to deal with them.
A significant population of primary caregivers of chronic psychiatric illness also faced with reduced pride and thought less of themselves because of their problems related to the patients. This was in accordance with another study conducted in the past where it was found that the wives of men with psychotic disorders experience greater levels of burnout, frustration and anxiety along with isolation from society and increased workload. The wives of men with Schizophrenia experience greater anxiety, burnout, frustration, isolation from the society and workload. Experience shows that unemployed, divorced, or widowed patients are among the groups with increased dependence due to their impaired social support network; thus, the burden experienced by their caregivers increases It was observed that a considerably high number of people caring for patients with psychiatric illness felt ashamed and embarrassed because of the problems related to the illness. EE, is a measure of the family environment, which is based on how the relatives of a psychiatric patient spontaneously talk about the patient. Theoretically, a high level of EE at home can worsen the prognosis in patients with mental illness or act as a potential risk factor for family burden. Families of patients with schizophrenia are rated as “High EE” if they are critical, hostile, or emotionally overinvolved. Results of this study also showed that by increased duration of disease, the primary caregiver experienced greater burden. Such positive correlation has been confirmed in many previous studies,, because burnout syndrome develops in family members, particularly in primary caregivers. The findings also showed that the variables that were significantly associated with caregiver burden (family income, duration of illness, and age of onset of disorder) have the ability to predict the severity of the burden in caregivers.,
A particularly harmful negative stereotype against people with mental illness is that they are dangerous or unpredictable., Caregivers of patients with psychiatric illness felt that if their neighbors, colleagues, or others in the community found out about the illness, they would think less of the patient and them. And also, that would cause social problems for the children of the family in the community in general. A number of factors have been found to be significant predictors of perceived stigma among patients with schizophrenia from previous studies including educational status, residency, social withdrawal, nonadherence to medication, duration of illness, marital status, old age, and low self-esteem.,, Further exploration is needed to interpret the causative factors for such stigma and ways to overcome it. It was found that a significant proportion of caregivers with high EMIC score were treated more unfairly [Table 6]. Ghana study found that the people avoided contact with patients of leprosy because it is a contagious disease and people feared being infected. It was also observed in the same study that the caregivers of the patients were also perceived to be risky by the general population, including the noninfected children. Because of the stigma, they were also often mocked. These facts are similar to our study. The extent of stigma is directly correlated with caregivers being treated unfairly in various areas of their lives [Table 7]. This is self-explanatory as being treated unfairly builds negative EEs towards the patient. This is in accordance with other studies that indicate that the stressors of the patients can affect the disease' burden on the family. It was also found that stigma decreased if the caregivers stopped themselves from experiencing things. This is more in psychiatric patients probably because their self-care can be hampered, which is less likely in patients with dermatological illnesses. Another finding was that the education level of the patient was inversely proportional to the stigma perceived by the caregivers in cases of psychiatric illnesses. It could be attributed to the better understanding of the illness and more compliance with medication. The nature of stigma associated with serious illnesses depends on some features like threats the illness represents to others. The perceived stigma was higher in younger caregivers and lesser in caregivers that were older in age. The studies under consideration have not explored the relation of age of caregivers with the extent of stigma in patients of chronic dermatological illness. This field needs to be explored further to know the reasons for the same.
It was found that the earning members in the family were negatively linked to EMIC score. Among the other burdens experienced by the patient and the family, the financial burden is lesser because of this. A study conducted over a period of 5 months in the US found that psoriasis causes a substantial burden on the individual and the healthcare facilities. The financial burden is attributed to the time taken off from work, the cost of care, decrease in the quality of life, and interference with social and professional life in general. The psychological impairment from psoriasis has been linked to greater disability than physical measures of severity., The caregivers who were treated more positively had more perceived stigma. The study conducted amongst the caregivers of the patients of a leprosarium in contrast suggested that the more the caregivers spread education, the lesser they observed stigma to be in the public eye. The higher education of caregivers was positively linked to higher score in EMIC scale implying that the more educated caregivers had more perceived stigma in cases of chronic dermatological illnesses. Although, to the best of our knowledge, this issue was not found to have similar results in the past studies that have been conducted in the field. While there has been research toward stigma in patients and ways to overcome that, the stigma in caregivers is seldom considered. In addition to the stresses of the illness in their family, they deal with added perceived stigma from the society. More awareness is needed in this field, and additional family therapy sessions or group therapies are needed for those who care for the patients. Studies have calculated stigma in both dermatology and psychiatric patients, but the research toward stigma among caregivers has been limited. Our study focused on caregivers, and the results revealed high levels of stigma in both groups. Further research is needed in this field to evaluate the causes of perceived stigma and ways to eliminate them.
The cases of the sample belonged to a tertiary care center and did not reflect the general prevalence. The sample size was modest. A larger sample would throw more light on the extent of the problem in the general population.
| Conclusion|| |
Perceived stigma was found to be high in caregivers of both patients of psychiatric illness and chronic dermatological illnesses. Comparatively, perceived stigma was higher in the caregivers of patients with psychiatric illness.
Financial support and sponsorship
Conflicts of interest
There are no conflicts of interest.
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[Table 1], [Table 2], [Table 3], [Table 4], [Table 5], [Table 6], [Table 7]