Confessions of a researcher: blind alleys, unintended consequences and really big mistakes. (research reflections).

I remember a birthday gift that my older brother got when I was in preschool--a really huge Pink Pearl eraser that had the words, "I never make BIG misteaks" printed across it. By the time I was old and schooled enough to get the joke, I had already made plenty of my own.

Before I can comfortably commence as your resident researcher and author of "Research Reflections," I have a few confessions to make. The first is that I wear my heart on my sleeve--you'll always know where I'm coming from. When I was asked to write this column for Exceptional Parent (EP), I was excited. I had been working with and studying parents since graduate school, but the pressure was always "on" to publish in the most scientific (read: esoteric, ivory tower) journals. After 20 + years of this, it is time to communicate with the readers I care most about.

I'll start off confessing one really big mistake--believing everything I read about parents of exceptional children. The literature we were assigned in graduate school evoked images of Edvard Munch's etchings--depressed, sad faces of stressed-out parents and families. In a subsequent column I will review 100 years of this literature on families and disability for you; suffice it to say here that challenges were emphasized over triumphs, negative impact and stress over positive contributions. I was led early on to expect to find great family distress. After almost 20 years of studying large numbers of families who have children/young adults with severe disabilities, I have learned that the best word to describe these parents is resilient. They have withstood the fickle winds of social policy and practice regarding their children (from advice to "place that child into an institution and forget about him," to "all children with disabilities belong with their families," to "young adults with mental retardation should be living and working independently in the community.") And, in addition to dealing with ongoing or newly appearing behavior problems or medical concerns, they have had to contend with the arrogance, stubbornness or insensitivity of service providers and professionals. If that isn't resilience, then what is?

Researchers' dilemmas are not always about really big mistakes, however; sometimes we just find ourselves traveling up a blind alley, as we did in some of our earlier studies of family coping. Since 1982, we have been interested in what factors help parents to keep a child with very severe impairments at home, and what factors influence out-of-home placement. We hypothesized that a lack of "attachment" between parent (mainly mother) and child would increase the likelihood of placement. This was based, in part, on a review that my friend and former mentor, Ed Meyers, and I published in 1983. Furthermore, we hypothesized (based on all that accumulated literature) that once a family placed a child, family members would soon "detach." Detachment (or "out of sight, out of mind") would be evident by lack of visitations and phone calls to the child/caregiver, for example. Our hypotheses apparently seemed reasonable to the federal agency that funded the project. It turned out that not only did mothers express and exhibit strong attachment to their children (behaviorally and as reported on questionnaires or in interviews), but also that this attachment was a primary reason that families did not place sooner. In no case did a family place because of lack of attachment.

In order to study "detachment," we embarked on a series of studies of families who had recently placed their son or daughter. These studies included several hundred families whose children were in residential facilities in California, Arizona, Massachusetts, or Florida. In one study, Bruce Baker, Kristin Feinfield and I interviewed 53 families three times, an average of 1, 2, and 3 1/2 years following placement. Parental visitation remained high across these time periods, with 83 percent of families reporting some type of visit at least monthly by the end of 3 1/2 years. Expressed attachment was high and stable, and most parents reported experiencing less guilt than at the time of placement. Parents were still thinking and. talking about the child frequently. In additional studies, using other families, we also found little evidence for detachment. Parents' level of involvement with their children right after placement was highly predictive of their involvement 3 1/2 years later. Furthermore, in a series of studies we have discovered that parents' own adjustment post-placement, and their perceived well-being of their family, was very high following placement. In sum, the attachment-detachment theory in this case did lead me down a blind alley, but in its pursuit I arrived with further evidence of parents' resilience.

And then, sometimes to a researcher's dismay, there are unintended consequences. Another aspect of family coping that has been of interest to researchers, practitioners and families alike is "support." As you well know, support for families can take many forms, and trying to assess parents' knowledge of, use of, and satisfaction with support has posed real research challenges. In our studies, we have been concerned most with formal support (services provided by the public schools, regional centers or state agencies, or the federal government) and informal support (mainly from friends or other family members). One clear intention of such support was to increase the well-being of families, reduce stress and, for some, prevent the likelihood of costly out-of-home placement. Ironically, we found that the more formal support (especially respite) that parents of children with severe retardation had, the more likely they were to consider, and eventually follow through with, out-of-home placement. Such unintended consequences were, at first blush, alarming and puzzling to us.

Upon further inspection, the notion that the more supports parents had, the more they wanted seemed reasonable. For one thing, the number and intensity of services were related to the child's behavior; low adaptive skills and high maladaptive behavior became a formula for family support need. However, we found that service providers couldn't understand why, after disseminating the contents of their "little black bag" of social supports, parents requested more and more, and then went on to seek out-of-home placement anyway! We realized that their delivery of all those service "goodies" came too late--after families had made the decision to seek out-of-home placement, after they had shopped around for placements, and after they had decided they couldn't take the stress any more. As researchers, it became our job to inform service agencies that they needed to provide meaningful support to families who have children with severe disabilities and maladaptive behavior as early as possible, before there is so much stress that a family crisis occurs.

As a researcher, I have never found a really big pink eraser to wipe out my mistakes--but being alert to them has taught me much. What I hope for is more opportunity to reflect on findings from the field--both good and bad--and the wisdom to know the difference.

These studies I refer to have been funded by the National Institute on Child Health and Human Development (NICHD) of the National Institute of Health. While each particular grant since 1982 addressed different issues across the lifecycle of families (e.g., parents' perception of schooling; the correlates and consequences of placement; adolescence and lifespan concerns; the transition to adulthood) together they comprise what is known as the University of California, Riverside (UCR) Families Project. The Project began in 1982 with 100 families who had children with severe disabilities, then between the ages of 2 and 9 years. Today, I am still studying the original group of families, plus hundreds of others who became participants during follow-up waves of the study.

EDITOR'S NOTE: A list of the studies offered by Dr. Blacher may be obtained by e-mailing requests to: [e-mail].

This month, EP is honored to introduce its readers to Dr. Jan Blacher who will contribute a regular column on research in the area of family and disability: Research Reflections. Dr. Blacher received her AB from Brown University, and her PhD from the University of North Carolina at Chapel Hill. She has been a Professor in the School of Education at the University of California, Riverside, since 1979, where she teaches a course on exceptional children required of teachers in California; she also teaches and trains masters and PhD students in research on exceptionality. Dr. Blacher's own research has had a parent/family focus for the last 25 years. She is principal investigator of the UC Riverside Families Project, a study of families of children with severe disabilities that has been ongoing since 1982. Over 600 families have been involved in the Families Project research; their participation has contributed to our knowledge about family coping, the cultural context of retardation, dual diagnosis, and the transition to adulthood. Due in part to the encouragement of her own research families, Dr. Blacher has developed Research Reflections as a forum for communicating exclusively with parents. The purpose of this column is to provide "news you can use." She is eager to read your reactions to Research Reflections and any suggestions you might have. Send email to: [e-mail].