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University of Kentucky UKnowledge Theses and Dissertations--Communication Communication 2019 NAVIGATING THE MICHELLE P. WAIVER: A NARRATIVE EXAMINATION OF THE IMPACT OF PARENT CAREGIVER- RELATED UNCERTAINTY AND DECISION MAKING FOR CHILDREN WITH DISABILITIES Whittney H. Darnell University of Kentucky, [email protected] Author ORCID Identifier: https://orcid.org/0000-0003-3302-0457 Digital Object Identifier: https://doi.org/10.13023/etd.2019.245 Right click to open a feedback form in a new tab to let us know how this document benefits ou.y Recommended Citation 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. https://uknowledge.uky.edu/comm_etds/82 This Doctoral Dissertation is brought to you for free and open access by the Communication at UKnowledge. It has been accepted for inclusion in Theses and Dissertations--Communication by an authorized administrator of UKnowledge. For more information, please contact [email protected]. STUDENT AGREEMENT: I represent that my thesis or dissertation and abstract are my original work. Proper attribution has been given to all outside sources. I understand that I am solely responsible for obtaining any needed copyright permissions. I have obtained needed written permission statement(s) from the owner(s) of each third-party copyrighted matter to be included in my work, allowing electronic distribution (if such use is not permitted by the fair use doctrine) which will be submitted to UKnowledge as Additional File. I hereby grant to The University of Kentucky and its agents the irrevocable, non-exclusive, and royalty-free license to archive and make accessible my work in whole or in part in all forms of media, now or hereafter known. I agree that the document mentioned above may be made available immediately for worldwide access unless an embargo applies. I retain all other ownership rights to the copyright of my work. I also retain the right to use in future works (such as articles or books) all or part of my work. I understand that I am free to register the copyright to my work. REVIEW, APPROVAL AND ACCEPTANCE The document mentioned above has been reviewed and accepted by the student’s advisor, on behalf of the advisory committee, and by the Director of Graduate Studies (DGS), on behalf of the program; we verify that this is the final, approved version of the student’s thesis including all changes required by the advisory committee. The undersigned agree to abide by the statements above. Whittney H. Darnell, Student Dr. Allison Gordon, Major Professor Dr. Bobi Ivanov, Director of Graduate Studies NAVIGATING THE MICHELLE P. WAIVER: A NARRATIVE EXAMINATION OF THE IMPACT OF PARENT CAREGIVER-RELATED UNCERTAINTY AND DECISION MAKING FOR CHILDREN WITH DISABILITIES ________________________________________ DISSERTATION ________________________________________ A dissertation submitted in partial fulfillment of the requirements for the degree of Doctor of Philosophy in the College of Communication and Information at the University of Kentucky By Whittney H. Darnell Lexington, Kentucky Director: Dr. Allison Gordon, Associate Professor of Communication Lexington, Kentucky 2019 Copyright © Whittney H. Darnell, 2019 https://orcid.org/0000-0003-3302-0457 ABSTRACT OF DISSERTATION NAVIGATING THE MICHELLE P. WAIVER: A NARRATIVE EXAMINATION OF THE IMPACT OF PARENT CAREGIVER-RELATED UNCERTAINTY AND DECISION MAKING FOR CHILDREN WITH DISABILITIES 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. KEYWORDS: Uncertainty Management, Decision Making, Disability Health, Medicaid Whittney H. Darnell (Name of Student) 06/05/2019 Date NAVIGATING THE MICHELLE P. WAIVER: A NARRATIVE EXAMINATION OF THE IMPACT OF PARENT CAREGIVER-RELATED UNCERTAINTY AND DECISION MAKING FOR CHILDREN WITH DISABILITIES By Whittney H. Darnell Dr. Allison Gordon Director of Dissertation Dr. Bobi Ivanov Director of Graduate Studies 06/05/2019 Date ACKNOWLEDGMENTS I would like to express my deepest appreciation to my committee chair, Dr. Allison Scott Gordon, who has held her bar high while also pushing me to meet it. I completed this process with a study that I am supremely proud of, and I would like to credit Dr. Gordon for her part in helping me to develop the skills and abilities necessary to conceptualize and complete this project. Without her guidance, this dissertation would not have been possible. I also want to thank committee member Dr. Kevin Real, who introduced me to the most influential research project I participated in during my time at the University of Kentucky. Our research collaboration with Dr. Bernard and his team at the University of Kentucky hospital helped me to find my footing as a researcher and to identify my strengths—particularly in translating health communication research—and to develop my academic writing voice. Thank you for the countless hours in your office and the supportive nature of your guidance. In addition, I want to thank committee member Dr. Brandi Frisby for always having instructive comments and a smile, for asking about my family, and for reminding me that it is possible to try new things, face setbacks, learn from them, and then rise again to do great things. To committee member Dr. Kathy Shepherd-Jones of the Human Development Institute (HDI), I cannot thank you enough for your personal support of this project. Dr. Shepherd-Jones was instrumental in the participant recruitment process and in helping me secure funding for the payment of my participants through the HDI. Additionally, I would like to give a special thanks to Elaine Eisenbaum at the HDI for her role in connecting me iii to disability health research, as well as a special thanks to Katie Bentley of the Commonwealth Council of Developmental Disabilities, whom I met through HDI, your friendship and guidance were instrumental to the conceptualization of this dissertation. The greatest of my thanks goes to my family and friends: Matt Darnell, I could not have asked for a better teammate in this game of life. You are my home and my heart. Thank you for believing in me, for protecting our babies, and taking care of so many big and little things so that I could pursue this dream. How about let’s just coast for a little while before we dive into the next adventure? (p.s. you now have this in writing, so when I get a big idea in a month or two, please remind me that I promised you this). Dear Cameron Matthew Darnell, you are such an amazing young man. I try to tell you every day, but I really am so proud of you. YOU inspire me. The world does not know it yet, but you are a difference maker and they are so lucky to have you. Like your dad, a lot of responsibility has fallen onto your shoulders over the last four years. I cannot believe I started this thing when you were still my little boy at 8 years old, and now you are 12! Thank you for helping with Hope and Ian’s homework, doing extra chores, and sharing your mom with graduate school for a while.

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