PARENTAL STRESS AND COPING DURING THE HOSPITALIZATION OF A CHILD Carolyn W. Jones A dissertation submitted to the faculty at the University of North Carolina at Chapel Hill in partial fulfillment of the requirements for the degree of Doctor of Philosophy in the School of Nursing. Chapel Hill 2015 Approved by: Mary R. Lynn Jocelyn Glazier Debbie Travers Marcia Van Riper Meg Zomorodi © 2015 Carolyn W. Jones ALL RIGHTS RESERVED ii ABSTRACT CAROLYN W. JONES: Parental Stress and Coping during the Hospitalization of a Child (Under the direction of Mary R. Lynn) Background: Having a child hospitalized in an intensive care unit is a stressful experience for parents. Some parents choose to write about their experiences in publically available weblogs posted on the Internet. These blogs can provide rich insight into the stressors encountered by families with an ill child, and how they use their emotional and physical resources to cope with those stressors. Method: Using the Transactional Model of Stress and Coping as a framework, 20 blogs written by parents while their child was hospitalized were identified using purposive sampling techniques. The blogs were analyzed using thematic narrative analysis, looking for stressors identified by the parents as well as ways they coped with the stressors. The following four research questions were addressed: (1) What stressors do parents report in blogs? (2) What coping strategies are identified by parents? (3) How do the stressors and coping strategies described by parents change over the course of their infant or child’s hospitalization? and, (4) Is there evidence in the blogs to support or challenge the supposition that secondary appraisal leads to problem- and emotion-focused coping strategies? Findings: Analysis demonstrated the identification of stressors and coping strategies within the text of the blogs. Five categories of stressors were found in the narratives: child- related, hospital-related, information, parenting, and self. Both emotion-focused and problem- focused categories of coping mechanisms were discovered. Emotion-focused techniques were iii used most often and categories included accepting, avoiding, maintaining hope, reframing, utilizing logic, and valuing. Problem-focused coping strategies included creating, providing, seeking and taking. These strategies were more often used later in the hospitalization and often in response to child-related stressors. Early in the hospitalization, parents described multiple stressors with no coping response documented. As the hospitalization progressed, identification of a stressor was more likely to be followed directly by a behavior or event, which appeared to be a coping strategy. The blog author’s appraisal and reappraisal of stressors was often implicit in the text, therefore it was difficult to isolate. Conclusions: Blogs provided a rich source of information related to stressors encountered by parents while their child was hospitalized, as well as ways they coped with those stressors. This information can lead to a deeper understanding of the experiences of families with a sick child, and to the development of ways to help parents cope. Improved coping can lead to better outcomes for families who experience the critical illness of a child. iv Dedicated to Max and Peggy v ACKNOWLEDGEMENTS Thank you isn’t an adequate expression of the appreciation I feel for Dr. Mary Lynn. She was the perfect mentor for me and understood how to keep me motivated, and I would not have made it through this process without her support. I would also like to thank the members of my committee for their support and patience as I slowly made my way through this process. The journey has been long, and I never could have completed it without the help and support of many. First of all, my parents, Max and Peggy West. They always believed in me and helped me believe in myself. I’m sorry that they didn’t live to see me finish, but I felt their encouragement to the end. My husband, Jeff, and my children, Weston, Will, and Natalie were always cheering me on and understanding when I couldn’t be there for every event. Their love and support kept me going when I wanted to stop. I also want to acknowledge the “First Year Supper Club” made up of my fellow doctoral students at UNC, especially Brandy Mechling, Britt Pados, Ashley Leak, and Kobie Lieper. We were there to support each other, and remind each other of the important things: Never underestimate the power of the semicolon and don’t forget to click on the running man. Our dinners together meant so much to me as we discussed school and life. To all the nurses, nurse practitioners, and neonatologists that I have worked with while in school, I say thank you for asking me how it was coming along, and not judging as the time stretched on (with a special thanks to Tracy Johnson and Cheryl Smith). Also thanks to the faculty and students at UNCW who have continued to cheer me on. vi My acknowledgements would not be complete without recognizing Starbucks for their contributions to my research. They kept me awake on the long drive to Chapel Hill (thanks to the crew at the I-85 exit 76 drive-thru). They hosted many work sessions where Dr. Lynn taught me to think and to believe in myself. And they helped me work late into the night when I pushed up against (or past) a looming deadline. One last thank you --- to the families of babies and children who are in the hospital. You teach me every day about resilience and hope in the face of crisis, and remind me of what is really important in life. In the words of my friend Kathy Kent Nesbitt in speaking of her daughter Julia’s ongoing illness “if love could cure she would never be sick.” vii TABLE OF CONTENTS LIST OF TABLES ...................................................................................................................................... XI CHAPTER 1 ................................................................................................................................................. 1 Introduction ...................................................................................................................................... 1 Background ...................................................................................................................................... 2 Conceptual Framework .................................................................................................................... 3 Narratives and Illness ....................................................................................................................... 6 Problem Statement ......................................................................................................................... 10 Research Questions ........................................................................................................................ 10 Summary ........................................................................................................................................ 10 CHAPTER 2 ............................................................................................................................................... 12 Overview ........................................................................................................................................ 12 Review of Research ....................................................................................................................... 13 Parents’ Experiences during the Hospitalization of an Infant or Child ......................................... 13 Social Support ................................................................................................................................ 20 Blogging Illness Experiences ......................................................................................................... 21 Parents’ Internet Writings about Their Child’s Illness .................................................................. 26 Summary ........................................................................................................................................ 32 CHAPTER 3 ............................................................................................................................................... 33 Introduction .................................................................................................................................... 33 Research Approach ........................................................................................................................ 33 Overview of Research Design ....................................................................................................... 36 viii Issues of Trustworthiness ............................................................................................................... 40 Summary ........................................................................................................................................ 47 CHAPTER 4 ............................................................................................................................................... 49 Research Question 1: Stressors Reported by Parents ..................................................................... 50 Child-related ..................................................................................................................... 50 Hospital-related. ...............................................................................................................