Parental Depression History Questionnaire
NOTE: This questionnaire is now closed. All mothers and fathers of children with an autism spectrum disorder (ASD) participating in IAN Research were eligible to complete this questionnaire. As of August 7, 2009, Parental Depression History Questionnaires have not been assigned to new IAN Research registrants. If the questionnaire had already been assigned and appears in a mother of father's "family profile" task list, he or she may still finish it.
Viewing the Questionnaire and Results
To view this questionnaire and the results, visit IAN Data Explorer, a tool that allows you to look at how IAN Research participants have responded to individual questions on the IAN Research questionnaires. It displays charts and graphs based on IAN Research data. The charts and graphs show responses to individual questions and do not attempt to summarize data on complex issues. Help on IAN Data Explorer is also available.
Exploring Parental Depression: Families' Voices Shape the IAN Project
Often, what the IAN Project learns in partnership with families not only answers questions, but leads to new ones. This is exactly what happened in the case of parental depression. When IAN first launched, we asked a simple question of participating parents: "Have you ever been diagnosed with or treated for depression?" The number of parents, and especially mothers, who reported a history of depression, was much higher than expected: 45% of mothers and 22% of fathers participating in IAN said they had been diagnosed with or treated for depression. This compares with a lifetime prevalence of 16.6% for major depressive disorder in the U.S. 1,and these percentages have fluctuated only slightly as the number of parents participating in IAN has grown from a few hundred to thousands.
We shared this information on parental depression with families in our very first IAN Research Report, and the response was immediate. Parents began asking questions, via e-mail and in the IAN Community Discussion Forum -- where "Mothers, Fathers, and Depression" remains the most frequently visited topic of all:
- How many people were just feeling blue, and how many had suffered a true clinical depression, the kind a psychiatrist would diagnose?
- How many people felt the stress involved with their child's autism spectrum disorder (ASD) had played a role, and how many had suffered depression long before they had children?
- To what extent are families raising a child with an Autism Spectrum Disorder (ASD) also coping with depression in mothers and/or fathers?
The evolution of the Parental Depression History Questionnaire illustrates IAN's commitment to building a true partnership with families. Parents not only helped establish this questionnaire as a priority, they played a major role in its development. A small group of researchers, who were also parents of children with ASDs, prepared the first draft of the questionnaire. Experts in relevant fields, such as psychiatry and survey research, reviewed later drafts. In addition, volunteer parents shared their insights and provided invaluable feedback. The resulting questionnaire is truly the product of researcher-family collaboration.
Who Should Fill in the Parental Depression History Questionnaire?
It is important that all parents participating in IAN Research complete the new Parental Depression History Questionnaire. For one thing, there are sections about family stress that apply to everyone and are intended to guide the future development of Social and Financial Impact Questionnaires. For another, there is a need to compare individuals with and without a history of depression. If those who have never suffered from depression don't participate, researchers will be left with only part of the information they need.
We offer our sincere thanks to the researchers, parents, and researcher-parents who worked so hard to develop the Parental Depression History Questionnaire. It has come a long way since its first draft, and reflects the concerns and input of many. We look forward to sharing initial results of the questionnaire with the autism community in the very near future.
- Kessler, R.C., Berglund, P., Demler, O., Jin, R., Merikangas, K.R., & Walters, E.E. (2005). Lifetime prevalence and age-of-onset distributions of DSM-IV disorders in the national comorbidity survey replication. Archives of General Psychiatry, 62(6), 593-602.