Study Overview and Introduction

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This is a Vanderbilt Research Study, conducted by Teresa Ulman, M.S. as a dissertation project under the direction of Dr. Elisabeth Dykens, Ph.D. The purpose of the study is to learn more about the positive psychological experiences related to raising a child with a developmental disability. Eligibility requirements are as follows:

• You must be 18 years or older
• You must be a parent of a child between the ages of 8 and 25 with a diagnosis of one (and only one) of the following: Angelman syndrome, autism or PDD-NOS, Down syndrome, Prader-Willi syndrome, or Williams syndrome.

Benefits of the study include an opportunity to reflect upon the positive psychological growth that you may have experienced following the birth of your child with a disability.

The survey will take approximately 45-60 minutes to complete and consists of a series of questionnaires about you and your child. The questionnaires will primarily ask about your child’s behaviors, your thoughts about parenting, and how you are currently feeling in general. At the end of the study you will have the opportunity to write your thoughts in an unstructured format. Participation in the study is entirely voluntary. You may skip any questions and withdraw your participation at any time.


Few, if any, experiences in a person's life are as demanding or potentially rewarding as being a parent. In the case of being a parent of a child with a developmental disability, the task at hand may be even more demanding than had been expected. At the same time, many parents feel that parenting their child with a disability has been rewarding in ways that they never would have anticipated. Surprisingly there are almost no studies that look at the ways the experience can strengthen people, while there is plenty of research that looks at negative outcomes for parents. We would like to learn more about the demands of parenting your child, and how the demands have challenged you and perhaps even helped you grow.

We hope to use this study to learn what is related to positive experiences for parents. For example, is a positive experience related to the way you cope with stress, or what your child is like, or the type of support you get from others? We would like to use the results of this study to help more parents get the support they need to experience the positive side of parenting a child with a disability. To reach this goal, we will ask you many questions about all sorts of aspects of your life. Generally, the questions will fall into three categories:

1. General information about your family structure and support
2. Questions that will ask you to reflect on your experiences of parenting
3. Questions about your child, including his or her current level of functioning and behaviors

At the end of the survey we provide a space for you to share any thoughts or information that you would like to share. You do not need to write anything if you do not wish to do so. However, we would love to hear from you if you have anything else to say.