How Do Parents Conceptualize Their Children's Autism Spectrum Disorder? Validating a Measure of Caregiver Perceptions

Background:  Understanding how parents conceptualize their child’s ASD diagnosis (i.e., understanding it, beliefs about course, perceptions of control over course and/or treatment) may help researchers and practitioners better support families.  The Illness Perception Questionnaire-Revised (IPQ-R; Moss-Morris et al., 2002) is widely-used in studying chronic illness and is based on Leventhal et al.’s (1984) illness representation model.  Though not an “illness”, ASD is a chronic condition, requiring various treatment approaches across the lifespan (Aman, 2005; Shea & Mesibov, 2009).  The IPQ-R was modified for use with ASD (Al Anbar et al., 2010); parent scores on this measure may predict ASD treatment selection (Dardennes et al., 2011; Mire et al., 2015).  Perhaps parent perceptions as measured by the IPQ-R also represent cognitions that impact families of children with ASD in other important ways (i.e., parent and/or family stress, coping).  However, to date the only investigation into the psychometric properties and use of the IPQ-R in ASD is limited to a small sample of French families (n=89) with parent-reported ASD diagnoses.  

Objectives:  Examine construct validity of the IPQ-R for families of children with confirmed ASD diagnoses, which allows investigating function of IPQ-R ordered categorical response items for assessing parental perceptions, and to verify the factor structure of IPQ-Ras it relates to the constructs central to chronic health condition conceptualizations.  

Methods:  Parents of children and adolescents (n=362; child age M=13.44, SD=3.43) with confirmed ASD diagnoses from across North America were asked to complete the IPQ-R; data collection is complete.  We are in process of evaluating different polytomous IRT-CFA models (e.g., direct and indirect IRT model) to analyze the ordinal (i.e., Likert scale) item-level data yielded from the collected IPQ-R to determine the number and nature of dimensions (i.e., factors) measured when used with families affected by ASD.  

Results:  Parents in this study (age M=46.10, SD=5.93) were likely to have a bachelor’s degree or higher (73.5%) and higher-than-average family income (median: $100,000).  In this sample, 72.6% of parents reported that their child’s overall ASD severity was “moderate”.  Using the scoring criteria based on the original IPQ-R model (i.e., not with families of ASD), initial correlation analyses indicated the relationships of the items and subscales ranged from .12 to .80.  An exploratory factor analysis indicated two additional factors when comparing with the original measure structure.  Confirmatory factor analysis of the original IPQ-R factor structure indicated differences in the structure of three subscales when the measure is used with ASD.  Forthcoming analyses will further examine construct validity of the IPQ-Rfor families of children with ASD using polytomous item response theory (IRT) models embedded in a confirmatory factor analytic (CFA) model.  

Conclusions:  Parents’ cognitions may be critical mediators between family functioning and child outcomes among children with ASD.  However, measurement of such parent perceptions and attributions is lacking.  The IPQ-R has been widely used to study many chronic health-related conditions and may be a viable measure for better understanding parents’ conceptualizations and ultimately treatment-seeking and coping behaviors among families of children with ASD.