Development and testing of a self-report measure of preparing to parent in the context of a fetal anomaly diagnosis

Abstract

Objective: To generate a self-report instrument to capture clinically relevant variations in expectant parents' caregiving development, specified by how they are preparing to parent an infant with a major congenital anomaly.

Methods: Recent literature structured domains to guide item generation. Evaluations by experts and expectant parents led to a refined instrument for field testing. Psychometric testing included exploratory factor analysis, internal consistency, and test-retest reliability.

Results: Samples included expert evaluators (n = 9), and expectant parent evaluators (n = 20) and expectant mother field testers (n = 67) with fetal anomaly diagnoses. Preparing to Parent-Act, Relate, Engage (PreP-ARE) resulted from a three factor solution that explained 71.8 % of the total variance, with global Cronbach's α = 0.72, and sub-scales 0.81, 0.65, 0.72 respectively. Cohen's weighted kappa indicated all items were acceptably reliable, with 14 of 19 items showing moderate (≥ 0.41) or good (≥ 0.61) reliability. Convergent validity was found between the maternal antenatal attachment and Act scales (r = 0.39, p = 0.001).

Conclusion: This empirically-based instrument was demonstrated to be valid and reliable, and has potential for studying this transitional time.

Practice implications: PreP-ARE could be used to understand patient responses to the diagnosis, level of engagement, readiness to make decisions, and ability to form collaborative partnerships to manage healthcare.

Keywords: Assessment; Exploratory factor analysis; Infant care; Instrument development; Maternal-fetal care; Measurement; Parents; Pregnancy; Prenatal care; Prenatal diagnosis.