NAVIGATING THE MICHELLE P. WAIVER: A NARRATIVE EXAMINATION OF THE IMPACT OF PARENT CAREGIVER-RELATED UNCERTAINTY AND DECISION MAKING FOR CHILDREN WITH DISABILITIES
Author ORCID Identifier
Year of Publication
Doctor of Philosophy (PhD)
Communication and Information
Dr. Allison Gordon
The Michelle P. Waiver (MPW) is the primary means of health insurance for more than 10,000 people in the state of Kentucky. The waiver is especially popular among families with young children with disabilities because it is robust in its benefit offerings and also one of the few Medicaid resources that does not include parental income as a qualifying factor in eligibility. Through the waiver, children receive a medical card as well as additional coverage for medical expenses that fall beyond the scope of traditional health insurance. For these young children to gain access to the comprehensive offerings of the MPW, their parents must apply for the waiver, negotiate the terms of service, and make critical health care decisions on their behalf, or at least until they reach adulthood—although this responsibility often extends throughout the child’s life. The present study builds upon recent research on parental uncertainty in caregiving for children with complex care needs. By combining two ecological approaches to health communication research, Brashers’s (2001) uncertainty management theory (UMT) and Ball-Rokeach, Kim, and Matai’s (2001) communication infrastructure theory (CIT), my aim in this dissertation was to explain how meso-level (e.g., community organization) interactions influenced parental caregivers’ experiences of uncertainty. I collected data through narrative interviews with 31 parents of children who are currently receiving services through the MPW and analyzed them using narrative thematic analysis. The analysis focused on the community-level communication that contributes to parent caregivers’ ability to successfully access and negotiate care within the MPW system. Findings show that parents experience unique personal, social, and medical uncertainties related to the MPW. In addition, the findings demonstrate that MPW-related uncertainty and decision making are managed with a variety of strategies aimed to decrease, increase, or maintain desired levels of uncertainty. Finally, findings showcase how one’s connectedness to community storytelling at the meso level, particularly within online communities and disability network communities supports their adaptive management of MPW-related uncertainty. This project contributes to the health communication literature theoretically by (a) expanding the conceptualization of the uncertainty in illness framework to include the means of health care (i.e., Medicaid) as a consequential element of an individual’s illness experience, (b) identifying two additional strategies of uncertainty management (i.e. advocacy and vigilance), and by (c) extending existing notions of residency, connectedness, and belongingness within the CIT framework to include membership in online and disability-specific networks. Practically, this project offers important insights that can guide future research exploring the role of meso-level communication in parent caregivers’ management of waiver-based care, such as in identifying the need for a systematic communication process that introduces potentially eligible families to the MPW.
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Awarded $600 grant from University of Kentucky's Human Development Institute (HDI) for the payment of participants.
Darnell, Whittney H., "NAVIGATING THE MICHELLE P. WAIVER: A NARRATIVE EXAMINATION OF THE IMPACT OF PARENT CAREGIVER-RELATED UNCERTAINTY AND DECISION MAKING FOR CHILDREN WITH DISABILITIES" (2019). Theses and Dissertations--Communication. 82.