Family Views on Quality of Life and Intellectual Disability

For Parents or Primary Caregivers/Legal Guardians

We invite you to take part in a research study that focuses on family quality of life among
parents with a son or daughter with intellectual disability of any age. We are inviting hundreds
of parents across Illinois and Tennessee to share their views in an anonymous survey. A link to
the online survey, along with a description, can be found at:
(print versions of the survey are available upon request).

Forty parents will be randomly selected to receive a $25 gift card (choice of Starbucks, Amazon,
or Walmart) for completing the survey. Additionally, we will gather what we learn into a helpful
guide that we will make available for free to you, other families, faith communities, disability
organizations, and service providers throughout Illinois, Tennessee, and across the country.
We anticipate the survey should take about 30 minutes to complete.

You can participate if you live in Illinois or Tennessee and are the parent or primary caregiver/legal guardian of an individual with an intellectual disability of any age.

The survey includes questions on the following topics:

  • Background information about you and your child(ren)
  • Your views on your own family’s quality of life
  • Aspects of your social relationships
  • Aspects of your religious/spiritual life
  • Your experience with various life-stressors

You can skip any of the questions you prefer not to answer. And you can also change your mind  about participating after receiving and reading the survey.

As you can see, we are interested in learning more about what contributes to quality of life for families touched by intellectual disability. We are particularly interested in aspects of social relationships and religion/spirituality. For families with a child with intellectual disability, very little is known about these dimensions of life and how they may relate to family quality of life.  For some families, religion/spirituality may be an important part of life; for others, it is much less—or not at all—important. Regardless of where your views fall on this topic, we strongly encourage your participation in this study. We want to hear from parents with all different views!

We encourage your questions about this project at any time by contacting Thomas Boehm at (630) 752-5937 or For additional information about giving consent or your rights as participant in this study, please feel free to contact the Vanderbilt University Institutional Review Board Office at (615) 343-4138 or toll free at (866) 224-8273.

Thank you for considering this invitation!

Thomas Boehm, Mark Hiben, Madeline Hazel, Shimmy Gajjar, & Erik Carter
Disabilities, Religion, & Spirituality Program at Vanderbilt Kennedy Center, Vanderbilt University
Disability Research Program at Wheaton College

To access the survey online, click this link:

If you cannot access the survey online, you can also request a printed copy by sending an e-mail to Thomas Boehm at, calling him at (630) 752-5937, or sending the following information by mail: Your Name, E-mail, Street Address, City, State, Zip Code, Telephone #. Mail this information to: Thomas Boehm, Education Department, 501 College Ave., Wheaton, IL 60187-5593.

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