Assessment of stigma associated with attention-deficit hyperactivity disorder: Psychometric evaluation of the ADHD Stigma Questionnaire
Introduction
The Surgeon General identifies stigma surrounding mental illness and its treatment as a potent barrier to help-seeking (U.S. Department of Health and Human Services, 1999). A review of population-based studies highlighted the extent to which stigma surrounds mental illness (Angermeyer and Dietrich, 2006); however, this review also demonstrates that stigma associated with many mental illnesses has been understudied, since most stigma research has focused on depression, schizophrenia, and bipolar disorder. Furthermore, stigma exists at various levels; persons with mental illness not only encounter public stigma, expressed as prejudice and discrimination, but may also suffer from self-stigma, through acceptance of the prejudices that surround them (Ruesch et al., 2005), and their families or intimates may experience courtesy stigma based on kinship or affiliation with the stigmatized person (Goffman, 1963).
A recent study on stigma associated with child mental health conditions identified substantial stigma concerns among participating adults from a nationally representative sample (Pescosolido, 2007). Moreover, when responding to vignettes depicting several stigmatizing conditions including attention deficit hyperactivity disorder (ADHD), depression, “normal troubles” and physical illness, a gradient of rejection of these groups was reported such that individuals with ADHD and depression were rejected the most and those with “normal troubles” and physical illness were rejected the least (Martin et al., 2007). These stigmatizing reactions were higher toward adolescents than children. When presented with similar vignettes, children and adolescents (ages 8–18) participating in a national survey were more likely to make negative attributions about peers with ADHD and depression than peers with asthma, particularly with respect to the likelihood of antisocial behavior and violence (Walker et al., 2008). In addition, participants reported a desire to maintain social distance from peers with ADHD or depression. Social aversion toward people with ADHD was also endorsed by an older sample (i.e., college undergraduates) asked to rate the social desirability of targets with ADHD, minor medical problems, and “no appreciable weakness” (Canu et al., 2008). Because concerns about stigma may be particularly pertinent for adolescents who are developmentally sensitive about others' opinions and seek peer approval, their stigma perceptions may prevent help-seeking or prompt treatment discontinuation.
In light of these reports, it is surprising that there are currently no specific assessment instruments available to evaluate stigma associated with ADHD. For this study, we hypothesized that assessment tools originally developed to measure relevant stigma constructs in other health conditions might lend themselves to adaptation. In particular, the utility and validity of an instrument designed to assess stigma associated with human immunodeficiency virus (HIV) has been established (Berger et al., 2001), and three of its four subscales address domains potentially relevant to ADHD, namely disclosure concerns, negative self-image, and negative public perceptions toward affected persons. The HIV Stigma Scale is designed for completion by persons with HIV who are willing to acknowledge their membership in a stigmatized group; thus it inquires about personal experiences, yielding a fourth factor, personalized stigma. This first-person approach precludes the assessment of stigma perceptions with respondents who do not have or do not wish to acknowledge personal experience of the stigmatized condition. In order to broaden the usefulness of an ADHD stigma assessment tool, we deemed it desirable to eliminate the need to admit personal ADHD experience and instead focus on the assessment of public stigma perceptions. The aim of this study is to describe the design of an ADHD Stigma Questionnaire (ASQ) through adaptation of the HIV Stigma Scale, and to examine its psychometric properties. We addressed the following questions: (1) Does confirmatory factor analysis of the ASQ corroborate the hypothesized three-factor structure adapted from the HIV Stigma Scale, omitting the personalized stigma factor? (2) Are the three factors sufficiently represented by an overall stigma factor? (3) Does the ASQ demonstrate acceptable internal consistency? (4) What is the retest stability of the ASQ? (5) Does the ASQ demonstrate adequate construct validity, as assessed by relationships with related constructs, including clinical maladjustment, depression, self-esteem, and emotional symptoms?
Section snippets
Participants and procedures
Participants were drawn from a longitudinal study designed to produce a representative community sample of students at high and low risks for ADHD and followed over four study waves between 1998 and 2008. Details of the study design are described elsewhere (Bussing et al., 2003); this paper uses data from the initial assessment (i.e., baseline, ADHD risk status determined) and wave 4 (i.e., follow-up, ADHD stigma perceptions assessed).
Baseline parent telephone interviews included inquiries into
Description of the study cohort
Age, gender distribution, and symptom severity scores at wave 1 baseline and wave 4 follow-up are presented in Table 1.
Factor structure
A CFA conducted on the 26-item ASQ supported the parceled 3-factor structure with subscales of Disclosure Concerns, Negative Self-Image, and Concern with Public Attitudes. In contrast to the HIV Stigma Scale, we did not allow items to load on more than one factor. Table 2 demonstrates the frequency with which stigma items were endorsed and identifies on which subscale items
Discussion
This study investigated the psychometric properties of a measure assessing perceived stigma associated with ADHD. Results of the present study provide support for the use of the ASQ in community samples of adolescents both with and without a history of ADHD-related problems. Factor structure, internal consistency, item selection, test–retest reliability, and construct validity (i.e., convergent and divergent validity) of the ASQ were found acceptable, and results also supported the use of a
Acknowledgments
This research was funded by grants from the NIMH to Dr. Bussing (RO1 MH57399). The authors thank Wei Hou and Phillip Smith for their statistical consultation, and Dana Mason, Daliana Ferrero, and Sherine Presley for their contributions to the data collection for this study.
References (40)
- et al.
Addressing depression treatment preferences of ethnic minority patients
General Hospital Psychiatry
(2007) - et al.
NIMH Diagnostic Interview Schedule for Children Version IV (NIMH DISC-IV): description, differences from previous versions, and reliability of some common diagnoses
Journal of the American Academy of Child & Adolescent Psychiatry,
(2000) - et al.
Children's stigmatization of childhood depression and ADHD: magnitude and demographic variation in a national sample
Journal of the American Academy of Child & Adolescent Psychiatry
(2008) - et al.
Public beliefs about and attitudes towards people with mental illness: a review of population studies
Acta Psychiatrica Scandinavica
(2006) Comparative fit indexes in structural models
Psychological Bulletin
(1990)- et al.
Measuring stigma in people with HIV: psychometric assessment of the HIV Stigma Scale
Research in Nursing & Health
(2001) - et al.
Children with ADHD and depression: a multisource, multimethod assessment of clinical, social, and academic functioning
Journal of Attention Disorders
(2005) - et al.
Alternative ways of assessing model fit
- et al.
Barriers to detection, help-seeking, and service use for children with ADHD symptoms
Journal of Behavioral Health Services & Research
(2003) - et al.
Parent and teacher SNAP-IV ratings of attention-deficit hyperactivity disorder
Assessment
(2008)
Social appraisal of adult ADHD: stigma and influences of the Beholder's Big Five personality traits
Journal of Attention Disorders
Repeatability and method comparison
Thorax
Attitudes towards anorexia nervosa: the impact of framing on blame and stigma
International Journal of Eating Disorders
Perceptions of attention deficit hyperactivity disorder in one African American community
The Journal of Negro Education
Stigma: Notes on the Management of Spoiled Identity
Factor Analysis
Deficits in diagnosis, treatment and continuity of care in African-American children and adolescents with ADHD
Journal of the National Medical Association
Cutoff criteria for fit indexes in covariance structure analysis: conventional criteria versus new alternatives
Structural Equation Modeling
LISREL 8: User's Reference Guide
The Schedule for Affective Disorders and Schizophrenia for School Age Children: Present and Lifetime Version (K-SADS-PL)
Cited by (41)
Project Inclusive Genetics: Protecting reproductive autonomy from bias via prenatal patient-centered counseling
2023, Human Genetics and Genomics AdvancesThe double helix at school: Behavioral genetics, disability, and precision education
2021, Social Science and MedicineCitation Excerpt :Opponents of genetic testing in schools also reiterate the contentious history of misuse of behavioral genetics to devalue and segregate individuals from society (Nelkin and Tancredi 1991; Stein 2010; Callier 2012; Hodapp and Fidler 1999) and highlight the potentially coercive nature of genetic testing in schools, where students may constitute a “captive audience” (Rothstein 1997). These concerns may be further augmented by the stigma associated with child mental health conditions such as ADHD (Kellison et al., 2010). Testing children following a teacher's recommendation (rather than a pediatrician's) or allowing for children's behavioral genetic data to be used in educational settings may thus raise legitimate concerns.
A Systematic Review of Mental Health Literacy Measures for Children and Adolescents
2023, Adolescent Research ReviewPerson-centered language and pediatric ADHD research: A cross-sectional examination of stigmatizing language within medical literature
2023, Journal of Osteopathic Medicine