Development, Reliability, and Validity of the Alberta Perinatal Stroke Project Parental Outcome Measure

BACKGROUND: Perinatal stroke is a leading cause of cerebral palsy and lifelong disability, although parent and family outcomes have not yet been studied in this specific population. The Alberta Perinatal Stroke Project Parental Outcome Measure was developed as a 26-item questionnaire on the impact of perinatal stroke on parents and families. METHODS: The items were derived from expert opinion and scientific literature on issues salient to parents of children with perinatal stroke, including guilt and blame, which are not well captured in existing measures of family impact. Data were collected from 82 mothers and 28 fathers who completed the Parental Outcome Measure and related questionnaires (mean age, 39.5 years; mean child age, 7.4 years). Analyses examined the Parental Outcome Measure's internal consistency, test-retest reliability, validity, and factor structure. RESULTS: The Parental Outcome Measure demonstrated three unique theoretical constructs: Psychosocial Impact, Guilt, and Blame. The Parental Outcome Measure has excellent internal consistency (Cronbach alpha = 0.91) and very good test-retest reliability more than 2-5 weeks (r = 0.87). Regarding validity, the Parental Outcome Measure is sensitive to condition severity, accounts for additional variance in parent outcomes, and strongly correlates with measures of anxiety, depression, stress, quality of life, family functioning, and parent adjustment. CONCLUSIONS: The Parental Outcome Measure contributes to the literature as the first brief measure of family impact designed for parents of children with perinatal stroke.