• Research brings case workers into homes to teach moms how to cope with child's disorder
Brandi Anderson was struggling. Her 5-year-old daughter, Daniella, was having difficulties in school and at home, becoming increasingly defiant when Anderson would make a request as simple as cleaning up her room.
Daniella rarely would explain why she hadn't cooperated. And her mother, sometimes, was getting angry.
Worse, Anderson says, she would hold a grudge against her daughter, starting each day a little more frustrated than the day before.
Kindergarten was the year Anderson learned that Daniella, now in second grade, had attention deficit hyperactivity disorder.
ADHD children usually are hyperactive, impulsive and have problems with what is known as executive function, which encompasses a variety of abilities that help children solve problems.
Long term, ADHD children have higher rates of school failure and delinquency. Nationally, between 3 percent and 17 percent of children are estimated to suffer from ADHD.
But knowing Daniella had ADHD did not mean that Anderson knew what to do about it. All she really knew was that her daughter needed help.
Oregon Health and Science University researcher Judy Kendall doesn't deny that children such as Daniella need help. But she's got a theory that the help shouldn't start with Daniella.
Instead, Kendall wants to help Daniella's mother. And she appears to be doing just that, through OHSU's Parents and Children Together study.
This is Kendall's third study. The first two looked at how families cope when one of the children has ADHD. Those studies revealed something unexpected, Kendall says. She expected to find the worse the ADHD child's behavior, the worse the family would be doing as a whole. Instead, she discovered that there was little correlation between the child's behavior and the family's well-being.
But there was a barometer that would tell how a family was doing, Kendall discovered - the mother.
'How the mother does is how the family does,' Kendall says.
That holds generally true, Kendall says, whether the family is a single mother with a child or if a father is present.
'Some of these mothers get so exhausted and have to deal with so much they kind of wear out,' Kendall says. And, they get depressed. Kendall's work was partly inspired by a study five years ago, which showed that mothers of ADHD children were at high risk for becoming depressed.
Kendall wanted to find out if there was a way to help mothers learn to help their ADHD children. And then she wanted to find a way to objectively measure whether that help was making a difference in how the child and the entire family were doing.
'What we really want to measure is if we can help mom feel empowered, to be able to get the resources she needs, and most important, become her own family case manager,' says Kendall, a nurse and professor at the OHSU School of Nursing.
The Parents and Children Together study, which Kendall heads, is sending nurses into the homes of Portland families that have ADHD children.
The nurses, who sometimes go to the home as frequently as once a week, are there to test the theory that if they can decrease the stress level among mothers of ADHD children, the entire family will function better and the child will benefit.
Kendall has about 150 local families participating in the study, which started a year and a half ago and will finish in 2010. She needs about 30 more. And she needs them soon, before June, if her research is going to have enough numbers to validate its findings.
When Anderson and Daniella began participating in Kendall's study, case manager Aaron Tabacco would visit their home about once a week. But he would rarely see Daniella. His focus has been on Daniella's mother. Now the visits occur about once a month, but Anderson knows Tabacco is available on short notice when needed.
When a call came from Daniella's school about a month ago that Daniella had hit another child, and Anderson found her daughter wouldn't explain why she had done that, Anderson, in tears, called Tabacco.
'Instead of getting mad I called Aaron,' Anderson says. Tabacco, she says, explained one more time that Daniella couldn't tell her why she had hit her classmate because she probably didn't know herself. And that getting angry with Daniella would only make matters worse for both of them.
'You just let it go'
Tabacco has accompanied Anderson to school and helped her talk with teachers and school administrators about Daniella's needs. He's working with her and Daniella's father, Jason, on putting more structure into Daniella's life.
The focus of that attempt is presenting Daniella with a written schedule each morning that tells her what to expect throughout the day, from wake-up to bedtime.
But the biggest lesson she's learned through Tabacco's visits, Anderson says, is how to adjust her attitude. 'At the end of the day you just let it go,' she says. 'The next morning is a new day. You hope it's going to be better. If it's not, you just cope with it.'
Kendall says that in the long run, teaching mothers how to use the help that is out there is the most important role the nurses play. Many ADHD children need mental health services, but there is a tremendous shortage of child psychiatrists, both nationally and in Portland. ADHD kids often become substance abusers. Schools often need to be pushed to provide required extra services.
Most parents need someone to show them how they can advocate for their children and get the help that is available in all those areas, Kendall says.
But helping mothers such as Anderson is only part of what the Parents And Children Together study is about. At heart, it also is a research project, right down to the fact that half of the participating families don't get visits from nurses such as Tabacco because they become part of the control group.
When families sign up, they are randomly chosen to be part of the study group that receives nurse visits, or the control group that does not.
Study has inducements
At the end of 18 months - six months after the last visit from a nurse - all participating families are assessed for three criteria: the level of the mother's distress, the severity of the ADHD child's problems, and how the family is functioning.
The study even has inducements to encourage participants to spend an hour or more filling out its lengthy assessment forms.
Every six months, participating mothers who fill out their questionnaire receive a $50 gift card to either Fred Meyer or Target. There's a $10 gift certificate when anyone in the family other than the mother fills out a similar questionnaire.
Kendall says that the last round of questionnaires and assessments by nurses will be the most revealing. She knows that, as with most studies, the most telling data often is available only years after the research has been completed.
'The worst thing that can happen in this kind of intervention is that these mothers become so dependent on case managers that they're at a lower level of functioning at the end,' Kendall said.
But Anderson isn't worried that when her home visits stop she will fall back into old patterns of dealing with Daniella. Not that she won't miss Tabacco.
'It's going to be sad to see him go,' Anderson said. 'But do I feel my family will fall back? No. I see us furthering our education and bettering ourselves and finding out how we can continue what we've started. He taught me how to be confident and not worry about the stigma that people talk about.'
Study seeks more black, Hispanic families
Judy Kendall isn't bashful about admitting her Parents and Children Together study, which provides in-home help to families with children suffering attention deficit hyperactivity disorder, needs some help of its own. And soon.
If the study's data is going to be considered valid, Kendall should have about 30 more families enrolled by June. And while Kendall will take any qualifying families, she'd especially like mothers who are black or Hispanic.
One of the study's goals is to see whether black and Hispanic families with ADHD children benefit more or less than white families from the nurse interventions.
But getting those families to join, even when they are receiving free case management and gift certificates to Fred Meyer and Target, is difficult. Kendall thinks she knows why.
In her last research project, Kendall studied 50 white, 52 black and 57 Hispanic families with ADHD children. She says she found that culture made a big difference in how the ADHD children were perceived, and how families dealt with their often hard-to-control ADHD children.
'African-American boys with ADHD were generally treated like criminals,' Kendall says. 'The expectation (from the community) was that they would probably end up in jail.'
Kendall says she found that Hispanic families had difficulty accessing community services that might help. Part of the reason, she says, was a language barrier. But there also was a stigma in the Hispanic community associated with mental illness and disorders that was hard for families to overcome, Kendall says.
'A lot of time the mothers blamed themselves and assumed it was bad parenting,' Kendall says.
White children with ADHD, even those with bad grades and delinquency, are more likely to be viewed as having a medical problem, according to Kendall's research.
Minority children with ADHD, she says, are more frequently viewed as behavioral problems. One national study she cites showed that only 47 percent of black children with ADHD received medical treatment for the disorder, compared to 70 percent of white children.
Money, Kendall says, was not a determining factor. The attitudes seemed to cut across socioeconomic lines.
The Parents and Children Together study currently has 10 black families, five Hispanic families and about 30 families that identify themselves as multiracial among its 150 participants.
Mothers with ADHD children who want to take part in the Parents and Children Together study should call 503-418-3603.
- Peter Korn