Mom Has HIV
Waiting to get the results of her blood test, the mother is suspended in time. Motionless in the waiting room, she struggles with suffocating what-ifs: "What if I die? What will happen to my kids? Where will they live?"
The doctor approaches, and without a word the mother knows the result. In the same instant, she knows whether the lives of her children continue unchanged or are set irrevocably on a new course.
Wealthy, middle class or poor, the moment is a powerful equalizer. But the outcome for the children is not necessarily so balanced. Most literature and intervention programs aimed at helping kids cope with parental illness and death are based on white, middle-class families, leaving inner city children, in particular, dramatically underserved.
With this in mind, Rex Forehand, UGA research professor of psychology and director of the Institute for Behavioral Research, has embarked on a landmark study, titled the Family Health Project, to determine the specific needs of inner city children whose moms are HIV-positive. His research team includes Lisa Armistead of Georgia State University, Gene Brody of UGA, Edward Morse of Tulane University, Patricia Simon of Louisiana State University Medical Center and Leslie Clark of the University of Alabama at Birmingham. Their findings will help policy-makers, researchers and clinicians design effective intervention programs to ease the problem.
The researchers chose this deadly illness because the rate of contracting HIV is growing more rapidly for women than for any other at-risk population. More than 50 percent of the women contracting HIV are African-American, and most fall into the lowest socioeconomic group. Because many of the women are of child-bearing age, current estimates project that AIDS will orphan 125,000 children, predominately from inner cities, by the year 2005.
Since 1994, with funding from the Centers for Disease Control and Prevention, Forehand and his colleagues have assessed 100 non-infected children (ages 6-11 when the study began) whose mothers are HIV-infected and 150 children whose mothers are not infected, all living in inner city New Orleans. The HIV-infected mothers were selected from the outpatient clinic at LSU Medical School; the non-infected mothers were selected from the same neighborhoods. Moms and kids in both groups have been interviewed at least three times, typically at 15-month intervals, to look at changes that occur over time.
It did not surprise the researchers to learn that adding HIV to the already staggering list of inner city stressors - among them poverty, violence, underfunded schools and inadequate living conditions - puts the kids whose moms have HIV at even higher risk for developing problems than the kids whose moms are well.
"That's probably the most noticeable and distressing thing: the fact that, in general, these kids - whether their moms are infected or not - are not functioning particularly well," Forehand said. "But the kids whose mothers are infected eventually do even worse."
Even though the impact of the mom's illness was expected, the ways these moms and kids cope have shattered many initial hypotheses. In particular, surprising findings centered on the importance of the mother/child relationship, access to continuity of care, importance of religion and the relative unimportance of whether the mother's illness was disclosed.
By positive relationship, Forehand said he means a mother's ability to connect with her kids - those somewhat intangible aspects of a parent-child relationship built by spending time together with enjoyable discussion, positive reinforcement and even laughter. In addition, resiliency under difficult circumstances also is bolstered by the mother's ability to provide structure and monitoring.
"Keeping up with the kids outside the home - who they are hanging out with, knowing where they are - is particularly important in an inner city environment where there is a lot of violence," he said. "Structure in the home is equally important to a child's adjustment - making sure homework is done, eating at a regular time, having a bedtime routine. A lot of times when you have a parent with an illness, or some other stress in the home, you find that these daily routines break down.
"We found in our study that kids with a good overall relationship with their mom, coupled with high monitoring and structure, fared best. But we also found that children who have a strong relationship with their mother, but do not receive much monitoring or structure, do better than those kids who only receive high monitoring and/or structure," Forehand said.
This is an important finding because teaching someone how to improve structure or monitoring for their children is, in many ways, easier to package than relationship building. But, clearly, an intervention program with the children's best interests at heart also must focus on the fundamental bond between mother and child.
"I went into this thinking that the transition after the mother dies was going to be much more dramatic than it actually is," Forehand said. "I mean, it certainly is dramatic in the sense that the child has lost a mother. But so many of these children already have a long-established relationship with their new caregiver that it is not as tense as it could be."
Remarkable to the researchers is that almost none of the children have gone into the custody of the state. Instead, most children whose mothers have died during the study have moved in with their grandmothers. And, for most, grandmother has been involved in their lives since the day they were born. In fact, family ties in the inner city harken back to a bygone era in many ways.
"The mobility of this population just doesn't exist," Forehand said. "Once you are in the inner city, it's very hard to get out."
However, the silver lining is that family ties are very strong. Generations of families live in the same housing projects, often providing immediate and very real support systems for these moms and kids. While the majority of the study's HIV-infected moms have not made legal arrangements for their child's continuity of care - an issue that researchers said needs to be addressed - more than 65 percent said that a grandmother or aunt will care for their children when they die. And, as it turns out, among those moms who have died, 95 percent of the children have been taken in by a grandmother or an aunt.
Interestingly, the presence of a ready caregiver may be the reason why kids report more problems than their moms report for them as the illness worsens.
In the disease's advanced stages, a mother may be too ill to notice what's going on emotionally with her kids, or the kids may not feel comfortable adding to her stress. But, equally likely, researchers said, is that the future caregiver shields the mother from the problems.
When Forehand studied hemophilic dads who had contracted HIV from blood transfusions, he found their wives played a similar role with their children, serving as an emotional barrier between the father's illness and the children's troubles.
Continuity, along with the somewhat better economic situation that grandparents may have and a potentially more stable home environment, may contribute to children not deteriorating in their adjustment after their mothers die, Forehand said. But he noted that the results remain preliminary because, fortunately, only one-quarter of the women in the study have died, thanks in large part to many new treatment advances. He also cautions that many of the transition effects may not show up for years.
"But, in terms of policy, we think our study will affirm that it is important that kids make as few transitions as possible once their mothers die," Forehand said. "Forcing a number of moves on a child, especially after the loss of a mother, is likely to be particularly detrimental.
"Fortunately, children have made substantially fewer transitions than we expected in the first six months after the death of their mothers. In fact, some children have not had to move at all as their grandmother was already living in the home," he said.
"Everybody, both the HIV-infected moms and the non-infected moms, reports being religious," he said. "Religion is immensely important to them."
When the researchers looked at the issue of religion, they didn't look at how it affects the children's adjustment, but rather how it influences the mother's life. What they found was that most women in the study report daily prayer, with the HIV-infected moms reporting a slightly higher rate of prayer. Both groups attend church regularly as well. This was a revelation to researchers who initially had thought infected moms might attend less frequently, based on physical limitations and the stigma often associated with the disease.
The groups differed when it came to the meaning of prayer. When researchers asked the non-infected moms if they thought prayer would be helpful to them if they had to cope with a life- threatening illness, they responded that it would be very important. The same question brought a more cautious response from the infected moms. While they too view prayer as very important, they rate it as less important in coping with their HIV infection.
In both groups, religious activity fostered a more positive outlook. "Although it doesn't seem to alleviate the depression and emotional distress among the HIV-infected moms, it does foster a more positive outlook for the future," Forehand said.
The researchers noted the reason lies in the fact that depressive symptoms are an indicator of current adjustment, whereas optimism is an indicator of future expectations. Prayer raises the hope for a positive future, he said.
Because both groups of women report such strong religious faith, Forehand says this area of study deserves more attention and could be especially useful when devising intervention strategies.
To tell or not to tell
For those who have been told, it may be that positive effects of open communication and the negative burdens of knowing cancel each other out, Forehand said. And, in the long term, it may turn out that children who have been told may have more awareness of how not to contract HIV than their counterparts. In terms of the immediate impact of disclosure, however, the study indicates telling children is almost a non-issue.
This is important to know, Forehand emphasized, because originally the thought was that intervention programs would need to provide direction for moms on when and how to tell their children about their HIV status. Now, it seems more appropriate not to push the issue, but instead to provide support if and when the mother does decide to tell her children.
As the Family Health Project moves into its sixth year, it's clear that time is both the enemy and the necessity in this type of study. Because of the nature of HIV/AIDS, the study results are not ones that can wait to be reported, and yet the complete results will not be in for several years.
With that in mind, Forehand said the most important thing the team knows so far is this: Professionals who work with HIV-infected moms and their kids should focus on the parent-child relationship first and then look at both the structure provided inside the home and the monitoring provided outside the home. He notes that any intervention in these areas should also include the child's future caregiver as early as possible, which helps ensure the child's continuity of care and limited transitions after the mother dies.
"Building a positive relationship, learning to impose limits and planning for the future help the children adapt," Forehand said. "All these things seem to build resiliency in these kids."
Jennifer T. Daly is an award-winning freelance writer based in Atlanta, Ga.