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Expectations and Experiences of Fathers Who Have Parented Children with and Without Intellectual Disabilities

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Expectations and Experiences of Fathers Who Have Parented Children with and Without Intellectual Disabilities East Tennessee State University Digital Commons @ East Tennessee State University Electronic Theses and Dissertations Student Works 12-2012 Expectations and Experiences of Fathers Who Have Parented Children With and Without Intellectual Disabilities Jane Christina Kusmik Walker East Tennessee State University Follow this and additional works at: https://dc.etsu.edu/etd Part of the Nursing Commons Recommended Citation Walker, Jane Christina Kusmik, "Expectations and Experiences of Fathers Who Have Parented Children With and Without Intellectual Disabilities" (2012). Electronic Theses and Dissertations. Paper 1224. https://dc.etsu.edu/etd/1224 This Dissertation - Open Access is brought to you for free and open access by the Student Works at Digital Commons @ East Tennessee State University. It has been accepted for inclusion in Electronic Theses and Dissertations by an authorized administrator of Digital Commons @ East Tennessee State University. For more information, please contact [email protected]. Expectations and Experiences of Fathers Who Have Parented Children With and Without Intellectual Disabilities ____________________________________ A dissertation presented to the Faculty of the College of Nursing East Tennessee State University In partial fulfillment of the requirements for the degree Doctor of Philosophy in Nursing __________________________________ by Jane K. Walker December 2012 __________________________________ Joy Wachs, PhD, RN, FAAOHN Sadie Hutson, PhD, RN, WHNP, BC Judy McCook, PhD, MSN, RN-BC William T. Dalton III, PhD Keywords: Intellectual Disabilities, Fathers, Children, Expectations, Experiences ABSTRACT Expectations and Experiences of Fathers Who Have Parented Children With and Without Intellectual Disabilities by Jane K. Walker The parenting experience is as diverse as the children parented. Each child has diverse personality traits requiring flexibility and specificity in parenting strategy. This need for flexibility and specificity is more complex when one or more children within a family has an intellectual disability. Although research in this area is abundant, investigators have historically focused on mothers' attitudes, beliefs, and behaviors to represent the entire family (Essex, Seltzer, & Krauss, 2001; Greenberg, 2002) rather than focusing on fathers and their caregiving relationships with their children in need of malleable but consistent parenting. Using a qualitative descriptive design, this qualitative study explored expectations and subsequent experiences of men who have fathered children with and without intellectual disabilities. The investigator collected data through face-to-face semistructured interviews with 8 fathers in Tennessee. During these interviews fathers discussed each of their children, specifically their expectations of and experiences with their children prior to birth, reactions to the differences among their children, getting through the day, and their responsibilities in teaching each child. NVivo 9.0 data management software was used. Four main themes were inductively derived from the data: Learning to Dance in the Rain, Just Do What Needs Doing, The Power of Patience, and Nurturing Uniqueness. These themes contribute to nursing knowledge by delineating the perspectives of men as they father children of differing intelligences. The results from this study suggest strategies for educators and practicing healthcare professionals working 2 with fathers in similar situations to increase mindfulness of this all-important relationship between fathers and their children with differing intellectual capacities; the investigator also proposes areas of continued research in this field. 3 Copyright 2012 by Jane K. Walker All Rights Reserved 4 ACKNOWLEDGEMENTS I pondered this question for months: How do I acknowledge those who have influenced my development as a nurse and an educator? My mother, Carolyn J. Wyss, never once said, "You should be a nurse!" and even kept silent as I chose a different path in the beginning. Well, Mom, I got it right on the second try! I guess I have a slight stubborn streak? Although I didn't realize it while it was happening, I would not be the pediatric nurse I am today without the encouragement and expertise of Marty Rucker. I am honored as a "veteran nurse" to work with her, sharing the love of pediatric nursing to all students deemed worthy to care for these tiny gifts. Thank you is not enough for all you have done for me! The dissertation process has been difficult to say the least! The one person who has been willing to fight the powers-that-be for and with me throughout its entirety has been Dr. Joy Wachs. We have both been through so much these past 4 years; it's a miracle we both hung in there. I am eternally grateful for that, your unending editing, and infinite encouragement through it all! The remaining members of my dissertation committee were unquestionably the best team I could have assembled: Dr. Sadie Hutson, Dr. Judy McCook, and Dr. Will Dalton. Your differing perspectives served me well to make my research so much more robust and powerful; I am eternally grateful for your expertise and perseverance! Dr. Sadie Hutson: Thank you for fighting to remain on my committee; Dr. Judy McCook: Thank you for saving me at the last minute; Dr. Will Dalton: Thank you for your willingness to go to unfamiliar territory. I will work diligently to publish these findings, continuing to grow in my research expertise, to make our efforts worthwhile. 5 DEDICATION I would like to dedicate this research to the people who made it possible. First, my family-- my husband Rob and daughters Kellen and Kiryn. For those many times you guys wanted me to play or help and the answer was, "Just a minute, let me finish this thought" or "I can't go because I need to work on my paper", thank you for trying to understand and keeping the disappointment from showing on your faces. Rob, I know it's been a long haul with quite a roller coaster ride, but it's D-O-N-E. Second, thanks are never enough for my mother Carolyn and step-father Kirk. For never doubting I could-- and eventually would-- finish the requirements for my doctoral degree, I can only hope I can be as great a cheerleader for my children as you both have been for me. Financially, emotionally, and all points in between, your sacrificial support is never ending. To everyone who ever inquired as to its progress, whether a former or current student, colleague, family member, or friend, it's finally finished! Where should we go to celebrate? I also dedicate this work to my heavenly Father without whom I am nothing. During all the times I thought I couldn't do it anymore, He carried me forward. A special thank you to those fathers who trusted me to tell their stories of fatherhood. What beautiful pictures you painted of your children and families. I am forever in personal debt to you for helping me reach this goal and professional debt to you for allowing me to share your experiences. Finally, to all those families out there who expected "normal" perfection in their children and got something a little different but just as perfect, thank you for all you do to advocate for your children. Here's to you from both the maternal and paternal perspectives: 6 WELCOME TO HOLLAND by Emily Perl Kingsley I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this...... When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting. After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland." "Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy." But there's been a change in the flight plan. They've landed in Holland and there you must stay. The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place. So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met. It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts. But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned." And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss. But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland. ©1987 by Emily Perl Kingsley. Reprinted by permission of the author (Appendix I). 7 DREAMS by John Cox While you spend a lifetime dreaming about your unborn child’s potential accomplishments, it’s generally not until the last few months before he or she is born that dreams go into high gear.
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