|DR. BUCKSHEY AWARD PAPER
|Year : 2017 | Volume
| Issue : 1 | Page : 7-13
Development and analysis of the factor structure of parents' internalized stigma of neurodevelopmental disorder in child scale
Ananya Mahapatra1, Vandana Choudhary2, Rajesh Sagar1
1 Department of Psychiatry, National Drug Dependence Treatment Centre, All India Institute of Medical Sciences, New Delhi, India
2 Department of Psychiatry (Clinical Psychology), All India Institute of Medical Sciences, New Delhi, India
|Date of Web Publication||14-Jul-2017|
Department of Psychiatry, 4th Floor, Academic Block, All India Institute of Medical Sciences, Ansari Nagar, New Delhi - 110 029
Source of Support: None, Conflict of Interest: None
Background: Parents of children suffering from neurodevelopmental disorders, frequently face public stigma which is often internalized and leads to psychological burden. However, there is a lack of data on the perceptions of internalized stigma among parents of children with neurodevelopmental disorders, especially from lower-middle-income countries like India. Aims: This study aims to develop an adapted version of the Internalized Stigma of Mental Illness (ISMI) scale for use in parents of children suffering from neurodevelopmental disorders and to explore the factor structure of this instrument through exploratory factor analysis (EFA). Settings and Design: A cross-sectional study was conducted in an outpatient setting in a tertiary care hospital in India. Materials and Methods: A total of 105 parents of children suffering from neurodevelopmental disorders (according to the Diagnostic and Statistical Manual of Mental Disorders Fifth Edition) were recruited for the study after screening for psychiatric disorder using Mini International Neuropsychiatric Interview version 6.0. A modified 16-item scale was constructed Parents' Internalized Stigma of Neurodevelopmental Disorder in Child (PISNC) scale and applied on 105 parents of children suffering from neurodevelopmental disorders, after translation to Hindi and back-translation, in keeping with the World Health Organization's translation-back-translation methodology. Statistical Analysis: EFA was carried out using principal component analysis with orthogonal (varimax) rotation. Internal consistency of the Hindi version of the scale was estimated in the form of Cronbach's alpha. Spearman–Brown coefficient and Guttman split-half coefficient were calculated to evaluate the split-half reliability. Results: The initial factor analysis yielded three-factor models with an eigenvalue of >1 and the total variance explained by these factors was 62.017%. The internal consistency of the 16-item scale was 0.91 indicating good inter-item correlation. Approximately 39.4% of the parents reported some form of Internalized stigma. Conclusions: The results revealed that the PISNC scale has high internal consistency and that it is made up of three distinctive factors: social withdrawal and alienation, stereotype endorsement, and discrimination experience. These factors although similar, are not identical, to the factors that underlie the ISMI scale.
Keywords: India, internalized stigma, neurodevelopmental disorder, parents
|How to cite this article:|
Mahapatra A, Choudhary V, Sagar R. Development and analysis of the factor structure of parents' internalized stigma of neurodevelopmental disorder in child scale. J Mental Health Hum Behav 2017;22:7-13
|How to cite this URL:|
Mahapatra A, Choudhary V, Sagar R. Development and analysis of the factor structure of parents' internalized stigma of neurodevelopmental disorder in child scale. J Mental Health Hum Behav [serial online] 2017 [cited 2018 Aug 18];22:7-13. Available from: http://www.jmhhb.org/text.asp?2017/22/1/7/210711
| Introduction|| |
The neurodevelopmental disorders are a group of conditions with onset in the developmental period. The disorders typically manifest early in development and are characterized by developmental deficits that produce impairments of personal, social, academic, or occupational functioning. These disorders are often associated with life-long deficits in all domains of functioning. Although the challenges experienced by caregivers of children with neurodevelopmental disorders have been frequently researched in Western countries,,, there is a relative dearth of literature regarding the experiences of caregivers from low- and middle-income countries. Existing studies from low- and middle-income countries have shown that families of children with neurodevelopmental disorders frequently experience stigma., Across many cultures, people with mental illness are among the highly stigmatized members of society. This stigma extends even to young children with mental health or neurodevelopmental disorders, who are similarly stereotyped as incompetent, and consequently are often treated in a pejorative way., Their parents, by virtue of their association experience, an extension of this stigma referred to as “courtesy stigma.”, Courtesy stigma in turn often contributes to the development of self-stigma for parents of offspring with intellectual disabilities (IDs) and/or mental illness. Self-stigma, also known as internalized stigma, is a consequence of the internalization of courtesy stigma as self-shame, which then has consequences for parents' well-being and their relationship with the child itself. It refers to a process of identity transformation that results in the loss of previously held identity of self and leads to an adoption of a stigmatized view of the self. Accordingly, a person related to an individual suffering from mental disorder comes to apply the stigmatizing views of others toward oneself. The internalized stigma of a parent is expected to be related to the negative stereotypes, devaluation, and discrimination associated with their child's mental illness and results in diminished self-esteem, self-efficacy, and social connectedness. Despite the plethora of research on the causes and consequences of internalized stigma for adults with mental illness, we have only a few emerging reports on how parents of children with mental health disorders experience internalized stigma.
The previous qualitative studies have documented the phenomenology of self-stigma among parents of children with neurodevelopmental disorders,, however, very few quantitative studies have been performed to examine this phenomenon and relate it to the caregiving experience. With the lack of psychometric assessment tools to measure the impact of internalized stigma among parents, it is difficult to examine and consolidate findings and investigate its role in parental stress, coping difficulties as well as psychological burden.
There are no prior studies from India, which have explored the phenomena of internalized stigma in parents of children with neurodevelopmental disorders. Hence, the present study aimed to develop a quantitative measure of internalized stigma perceived by parents of children with neurodevelopmental disorders in an Indian setting. The aim of this study was two-fold (1) development of a modified version of the widely used Internalized Stigma of Mental Illness (ISMI) scale, adapted for use in the parents of children suffering from neurodevelopmental disorders and (2) to explore the factor structure of this instrument through exploratory factor analysis (EFA) of the newly developed instrument - Parents' Internalized Stigma of Neurodevelopmental Disorder in Child (PISNC).
| Materials and Methods|| |
A cross-sectional, clinic-based outpatient study conducted in the Child Guidance Clinic, Psychiatry OPD, All India Institute of Medical Sciences (AIIMS), New Delhi, India.
Universe of the study
All parents of children with neurodevelopmental disorder for at least 1 year or more attending the Child Guidance Clinic, Psychiatry OPD.
One-hundred and five parents of children with neurodevelopmental disorder according to Diagnostic and Statistical Manual of Mental Disorders Fifth Edition (DSM 5), fulfilling the inclusion criteria, attending the psychiatry OPD, AIIMS, New Delhi constituted the study sample.
- Parents of children aged 1–12 years diagnosed with neurodevelopmental disorders according to DSM 5, fulfilling three out of the following criteria:
- Involved in caregiving of patient
- Is the most frequent participant in treatment
- Is to be contacted by the clinical staff in emergency.
- Living with the patient for the last 1 year or more
- Not being involved in the care of any other family member suffering from severe physical or mental illness
- No lifetime diagnosis of Axis I psychiatric disorder (as ascertained by Mini International Neuropsychiatric Interview [MINI] version 6.0)
- Age 18–60 years
- Willing to give informed consent to participate in the study.
- Any lifetime diagnosis of Axis I psychiatric disorder or mental retardation ascertained by MINI version 6.0
- Clinical history of neurological disorder, cerebrovascular disorder, head injury with loss of consciousness >5 min, epilepsy, etc.
- Clinical history of other major medical disorder interfering with assessment (excluding medically controlled diabetes mellitus, hypertension, and hypothyroidism)
- Clinical history of substance use disorder (except nicotine dependence)
- Unwilling to give informed consent.
A systematic face-to-face interview that consisted of structured and semi-structured components was used to collect data from the parents. Sociodemographic characteristics of the parents and illness characteristics of their children were obtained through the administration of a semi-structured pro forma. Screening for Axis I psychiatric disorders was done with the help of MINI version 6.0.
Internalized stigma for mental illness scale
The ISMI scale is a 29-item self-report measure designed to assess subjective experience of internalized stigma. The items are summed to provide scores on five subscales. These subscales provide measures of the following aspects mental illness self-stigma: alienation, stereotype endorsement, discrimination experience, social withdrawal, and stigma resistance. However, it has recently been suggested that the fifth subscale (stigma resistance) is conceptually different from the other subscales. Since the scale was developed, it has been widely used and found to be feasible, reliable, and valid.
Parents of children diagnosed with neurodevelopmental disorder who attended the AIIMS, Child Guidance Clinic in Psychiatry OPD were initially screened for the presence of any lifetime AXIS I psychiatric illness using MINI version 6.0. Those who fulfilled inclusion criteria were taken up for the study after explaining about the study and taking informed consent.
Construction of the instrument: Parents' Internalized Stigma of Neurodevelopmental Disorder in Child-Hindi version
The adaptation of the original 29-item ISMI scale to assess the internalized stigma of the parents of a person with mental illness was done by Zisman-Ilani et al. In a methodology similar to theirs, we followed a five-stage procedure applied to the Hindi version of ISMI for the development of the scale.
- The first stage consisted of modifying the wording of the items so that these would be relevant for parents. Accordingly, the word” myself” replaced by the term “child with mental illness”
- In the second stage, seven items that were irrelevant or that sounded artificial were excluded from this scale. An additional item, i.e., item 9 was also excluded after consensus decision of the authors as it appeared irrelevant to the construct we aimed to measure
- Finally, the five items that compose the theoretical stigma resistance factor were also excluded from the factor analysis. These items were excluded because the procedure by Ritsher et al. did not include the stigma resistance subscale in the factor analysis of the original scale, which matches recent findings that suggest that this factor was not an appropriate indication of self-stigma 
- This 16-item scale thus obtained was translated to Hindi using the WHO translation-back-translation methodology  and applied on the caregivers recruited into the study
- An EFA was performed on this modified 16-item scale.
Data were analyzed using the Statistical Package for the Social Sciences Windows version 20 (IBM SPSS, Version 20.0. Armonk, NY: IBM Corp). EFA was carried out using principal component analysis with orthogonal (varimax) rotation, which was applied to the participants' responses to the 16 items of the questionnaire to uncover the factors that appropriately and parsimoniously accounted for the relations between these items. The internal reliability of the subscales that were based on these factors was examined.
Mean and standard deviation (SD) were evaluated for continuous variables. Frequency and percentages were calculated for categorical variables. Internal consistency of the Hindi version was estimated in the form of Cronbach's alpha. Spearman–Brown coefficient and Guttman split-half coefficient were calculated to evaluate the split-half reliability.
Principal component analysis was performed to extract factor structure of the 16-item PISNC scale. Initially, Kaiser–Meyer–Olkin (KMO) value and Barrett's test of sphericity were evaluated to check whether the data can be used for factor analysis. Kaiser–Guttman rule was used to determine the optimal number of factors. Multiple factor analyses and scree plots were run to identify the optimal number of factors. A loading of ≥ 0.40 to extracted factors was considered meaningful and interpretable. When a particular item loaded ≥ 0.40 on 2 or more factors, it was assigned to the factor where it had the highest loading.
Ethical clearance was obtained from the Institute Ethics Committee. Informed consent was obtained from the subjects before inclusion in the study. The subjects had the right to withdraw their consent from participation at any time after inclusion in the study. Subject's participation and nonparticipation in the study did not have any bearing on their treatment. The identity of the subjects in the study was kept confidential to respect their privacy. Formal permission was sought from the authors of the ISMI for translating in in Hindi and standardizing it for the study.
| Results|| |
Sociodemographic and clinical profile
The sociodemographic profile of the patients, as well as caregivers, is shown in [Table 1]. The mean age of the patients was 10.13 (SD-3.21) years. The mean age of the parents was 36.02 (SD-5.48) years. Majority of the parents were fathers (68%). The most common diagnosis among the children was ID (53%). Approximately 26% were diagnosed with attention deficit hyperactivity disorder, followed by specific learning disability (14.3%), and pervasive developmental disorder (5.7%). Around 21.9% patients were diagnosed with more than one disorder.
Factor structure of the scale
The study sample of 105 patients was about 6.5 times the number of items in the scale. This was above the recommended numbers required for factor analysis. Initially to test the null hypothesis that the various items are unrelated in the study population, Bartlett's test of sphericity was used. The initial Chi-square statistic value was 1157.767 with a degree of freedom of 153, which was significant at P< 0.001. The KMO measure of sampling adequacy for the study group was 0.910, which indicated that the data could be used for factor analysis. EFA using Principal Component Analysis was conducted on 16 items. The initial factor analysis yielded three-factor models with an eigenvalue of >1, and the total variance explained by these factors was 62.017%. The loading of the various items on the different factors is shown in [Table 2]. As is evident in the three-factor model, all the items loaded on a factor. Item 3 and 4 loaded on two different factors but since the values were greater for Factor 3 for item 3 and Factor 1 for Item 2, they were considered for Factor 3 and Factor 1, respectively.
|Table 2: Summary of exploratory factor analysis and Cronbach's α of Parents' Internalized Stigma of Neurodevelopmental Disorder in Child Scale using principal component analysis (n=105)|
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Data of all the 105 patients were used for the assessment of the internal consistency of the scale. The internal consistency of the 16-item scale was 0.91 indicating good inter-item correlation. The internal consistency of the subscales, i.e., social withdrawal/alienation, discrimination experience, and stereotype endorsement was 0.83, 0.67, and 0.51, respectively.
Spearman–Brown coefficient and Guttmann's split-half coefficient were used to assess the split-half reliability of the scale. The Cronbach's alpha was 0.71 for part 1 (comprising 8 items) and 0.84 for part 2 (comprising 7 items) of the scale. The Spearman–Brown coefficient was 0.673, and Guttmann's split-half coefficient was 0.619 indicating acceptable spilt-half reliability.
Extent of internalized stigma in parents as measured by Parents' Internalized Stigma of Neurodevelopmental Disorder in Child-Hindi version
The response frequency for each of the 16 items in PISNC scale is shown in [Table 3]. Approximately 39.4% of the parents reported some form of Internalized stigma. Around 12% parents strongly agreed to “be ashamed to have a child with mental illness” and 10.1% to “Having a child with mental illness has spoiled my life.” Up to 60% agreed that “Mentally ill patients tend to be violent,” 48% agreed that “Mentally ill patients should not get married,” and 45.7% agreed that “People with a child with mental illness cannot live a good, rewarding life” demonstrating high levels of stereotype endorsement. About 55% agreed to “People without a child with mental illness could not possibly understand me” and 49.5% agreed to “I don't talk about myself much because I don't want to burden others with mental illness of my child” depicting high levels of social withdrawal and alienation.
|Table 3: Response frequency for each item of the Parents' Internalized Stigma of Neurodevelopmental Disorder in Child Scale|
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The results revealed that the PISNC Hindi version scale has high internal consistency and that it is made up of three distinctive factors: discrimination experience, social withdrawal and alienation, and stereotype endorsement. These factors although similar, are not identical, to the factors that underlie the ISMI scale. This study's findings also indicate that parents' prominent reaction to self-stigma is social withdrawal/alienation and stereotype endorsement.
| Discussion|| |
The purpose of the present study was to investigate the factor structure of a modified version of the ISMI scale by Ritsher et al. adapted to assess the internalized stigma of parents of children with neurodevelopmental disorder. This is one of the first attempts to measure internalized stigma quantitatively among parents of children suffering from neurodevelopmental disorder. The results revealed a three-factor model, comprising social withdrawal and alienation, stereotype endorsement, and discrimination experiences. These factors are similar to the factor structure obtained by the factor analysis of Parents' Internalized Stigma of Mental Illness (PISMI) scale by Zisman-Ilani et al. These factors also to an extent appeared similar to the dimensions of stigma, as proposed classically in a conceptual framework of stigma in childhood mental disorders, namely, negative stereotypes, devaluation, and discrimination. Self-stigma theory postulates that some among the socially devalued and discriminated, internalize public stigma by devaluing themselves, and deleteriously altering their behavior and attitudes. The “social withdrawal and alienation” factor in a way represented this component of stigma, which included both that negative affect toward self due to internalization of public stigma, as well as the behavioral component of this negative effect.
The factors obtained for PISNC scale also showed similarities to the theoretical structure of the original ISMI scale proposed by Ritsher et al. The social withdrawal factor/alienation factor of the PISNC scale had 4 items in common with the social withdrawal factor of ISMI scale, and 5 items common with the alienation factor. The stereotype endorsement factor had 3 items common with the stereotype endorsement factor of the ISMI scale. Finally, the discrimination experience factor had 3 items common with the discrimination experience factor of the ISMI scale. Hence, the scale's factors appeared to be consistent with the theoretical assumptions underlying the conceptualization of the original internalized stigma scale.
The factor analysis of PISNC revealed that the most prominent reaction to self-stigma, in parents of children with neurodevelopmental disorders, is social withdrawal and alienation. It has been suggested in the previous studies that, parents of children with neurodevelopmental illness limit their social interaction to avoid social embarrassment or rejection. This finding has been unlike that of the analysis of the PISMI scale which reported, stereotype endorsement as the most prominent reaction to self-stigma. However, construction of the PISMI scale was based on application of the scale on parents of adult patients with severe mental illness. Hence, there may be conceptual differences in the context and dimensions of stigma in these two groups, which needs to be delineated through further research. The second factor revealed that parents of children with neurodevelopmental disorders also endorsed negative stereotypes regarding mental illness as well as attribution of parental responsibility for child's mental illness. In the present study, up to 60% respondents agreed to the statement, “Mentally ill persons tend to be violent.” A number of public stigma studies have assessed the variance in s tereotype awareness, particularly with respect to dangerousness, incompetence, and disruptiveness stereotypes., Although there is a relative dearth of such studies in the field of child mental health, a few child-focused stigma studies have explicitly assessed negative stereotype, especially “dangerousness.” Finally, the third prominent factor reported was that of discrimination experience. Research on the stigma experienced by people with mental illness has found that the public frequently blames them for their symptoms and disabilities leading to discrimination and social rejection. Similar research has also suggested that the public views family members, especially parents, as responsible for the relative's mental illness. Typically, blame is attributed to bad parenting skills, for example, mother's incompetence leading to the child developing a serious mental illness. These findings suggest that interventions directed at the reduction of internalized stigma in parents of children with neurodevelopmental disorders should focus on their sense of alienation and consequent social withdrawal at an individual level. In addition, endorsement of negative stereotypes and experiences of discrimination and social rejection needs to be dealt with public health, advocacy, and education-related strategies.
Although our study provides a preliminary construct of the concept of internalized stigma in parents of children with neurodevelopmental disorders, a few limitations need to be discussed. The PISNC scale does not include items that refer to the internalized stigma associated with the empathic relationship between parent and child. This construct might be unique in relation to self-stigma in parents of children with mental health-related disability and needs to further explore. The study does not include data on the convergent validity of the PISNC scale. Further research to examine the psychometric properties of this scale is warranted to better delineate the properties and utility of this scale.
| Conclusion|| |
Despite certain, limitations, the present study is the first attempt to conceptualize internalized stigma from the perspectives of the parents of children with neurodevelopmental disorders and to develop a quantitative measure of internalized stigma in this study group, which can be utilized to understand the relationship of internalized stigma with caregiving experience, parental stress as well as burden. Although further research is warranted to replicate and further validate the measure, the findings of this study provided initial support of its validity. It is a step forward in providing a means to empirically and systematically study internalized stigma using a quantitative approach. This quantitative instrument may enable researchers to explore the effects of internalized stigma on the mental health and quality of life of parents. The phenomenon of internalized stigma should be further studied among parents of these children to assess its impact not only on their mental health but also on the dynamics of child-parent relationship as well as the quality of life.
The authors would like to thank Dr. Yaara Zisman-Ilani for her expert opinion regarding adaptation of the scale.
Financial support and sponsorship
Conflicts of interest
There are no conflicts of interest.
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[Table 1], [Table 2], [Table 3]