The work of Claude Ann Mellins, Ph.D. at the HIV Center began with a conversation with HIV Center Director Anke Ehrhardt, Ph.D. in the spring of 1989. While completing her internship in clinical psychology at New York Presbyterian Hospital, Dr. Mellins

planned on further pursuing her clinical and research interests on the multiple stressors facing vulnerable inner-city children and families. At their meeting, Dr. Ehrhardt told her that HIV would be one of the greatest challenges of the 1990s for this population, and suggested she consider applying to the HIV Center’s postdoctoral fellowship program. Dr. Mellins did so, and has been with the Center ever since as a Research Scientist and Director of the Family Studies Program. She is also an Associate Professor of Clinical Psychology at Columbia University and Co-Director of the Special Needs Clinic for Children and Families Affected by HIV at the Columbia University Medical Center

How did you begin the Family Studies Program?

There was very little known in 1990 about HIV-infected children or mothers. Around that time no one was paying attention to mental health or looking at stress or coping, because children were dying on average by age 5. Anke and I conducted a small, qualitative study of families caring for an HIV-infected child, examining the challenges they were facing and how they were coping.

A few critical insights came out of that study. First, we found such diverse family and caregiving configurations. There were few examples of what we think about as a “nuclear family." Rather, there were biological relationships and non-biological relationships in which grandmothers, aunts, uncles, and single parents, as well as gay couples in some cases, all coming together to care for children. There was just incredible diversity in family composition. Second, compared to relatives and foster care and adoptive parents, HIV-infected mothers were not receiving financial support to care for their children. Third, we found that HIV-infected children were under considerable stress, but so also were their uninfected siblings who were experiencing many of the same stressors. So this launched a research program examining the mental health needs of children and families affected by HIV.

How did your work evolve with this population?

First, we started to identify substantive mental health needs, including psychiatric disorders in our population that weren’t being treated. At the same time, another HIV Center fellow, Jennifer Havens, a psychiatrist, was working with the same populations, and also seeing that participants were not getting the mental health services they needed. Jenny and I asked if, as part of our fellowship and training, we could volunteer a few hours a week to open a clinic and treat some of these families. And so, supported by the HIV Center and Child Psychiatry, we opened the doors of the Special Needs Clinic at New York Presbyterian Hospital at the start of 1992 to provide mental health services, starting with about 30 HIV-infected children.

One of the first cases we had was a family of 9 in which the mother had died and, amid this tragedy, no plans had been made for the future care of these children. All of the children had mental health needs as well as case management needs, and we soon realized that we need to identify families earlier in the course of parental illness. So we changed our model to one in which adults and children could be seen in one mental health clinic so that we could coordinate with medical care clinics. We created liaison teams who would go to rounds at those medical clinics to identify patients before crises hit so that we could get them a full range of services, including psychotherapy, psychopharmacology, individual, family or group therapy.

I still co-direct the clinic now, working with Warren Ng, the psychiatrist who is the director, and Sheila Ryan, the social worker who is the program director. We currently serve over 300 patients at a time, and have treated almost 1600 over the years.

How have you merged your clinical and research interests?

In my work, I have adhered to what’s known as the Boulder model in clinical psychology, emphasizing the integration of clinical and research activities. The idea is that one’s clinical work should benefit from science and include efficacy-based interventions, while one’s research work should focus on clinically meaningful questions. So the Special Needs Clinic came out of research work, and it also helped to shape my later research efforts.

Early on, with funding from the W.T. Grant Foundation and NIMH we began to study families that included HIV-negative youths with HIV-positive mothers, to examine their sexual and drug risk behavior and mental health problems, and predictors of those problems in order to find ways to intervene. Those studies showed the importance of family and context in understanding youths’ behavior.

Later in the 1990s, as HAART became available to children with HIV, large numbers began living into adolescence. They were also beginning to engage in sexual risk behavior, to not adhere to their medications, and to experiment with substances, which was making providers very, very concerned. There were little data and no efficacy-based interventions, leading us to design CASAH (Child & Adolescent Self-Awareness and Health Project), funded by NIMH. Based on our previous work with uninfected youth and using Social Action Theory, we examined risk behaviors and psychosocial and contextual predictors of risk behavior in perinatally HIV-infected and perinatally HIV-exposed but uninfected children. The goal was to understand the unique role of growing up with HIV for infected adolescents.

What were your major findings?

CASAH revealed that many of these children were not living with their birth parents, were dealing with all the stressors that come along with living in chronic poverty n communities ravaged by substance abuse, and experiencing discrimination and racism -– all before HIV even came into the picture. And then they had to cope with a highly stigmatized medical condition. There had already been a number of large biomedical cohort studies with perinatally HIV-infected youth. But CASAH was one of the first studies focused on emotional and behavioral outcomes in perinatally infected adolescents.

We found that these youths were presenting with high rates of psychiatric disorders: about 60% of the infected adolescents and nearly 50% of the uninfected youth. Those are rates comparable to what you might expect to find in homeless, runaway, or in-patient populations. However, we also found that only 10% had initiated sexual behavior, which is not so surprising since the mean age at baseline was 12 years. More disturbingly, we found that youth in both groups who had initiated sex were starting early, with a high percentage not using condoms. It was clear that we really needed to understand who is most at risk and figure out how to intervene. Recently, we were funded to conduct CASAH-2, which will continue to follow this same cohort of youths as they progress further into adolescence and the transition into adulthood.

What are you focusing on now?

Elaine Abrams and I have been working with Mary McKay of Mt. Sinai School of Medicine and her program called CHAMP, which is designed to help youths to delay the onset of risk behavior. The best protective shield for children is their families, so we try to support families with supervision and communication skills, in addition to teaching youths skills for negotiating risky situations and dealing with peer pressure. With funding from the HIV Center and NIMH, we have worked with patients, caregivers and providers to adapt and pilot test CHAMP for perinatally infected children and their families in the US (CHAMP+US).

Most recently, with funding from NINR, we have extended that work to a hospital in Durban, South Africa, where there is a large population of infected adolescents. We are using cartoons because of low literacy rates but also because of significant cultural taboos around talking about puberty and sex. It’s much easier for families to talk about these difficult issues using a comic book format. In the US, we are basically eradicating pediatric HIV. But in South Africa, where treatment was not available on a large scale until recently, there are staggering numbers of HIV-positive women, and high rates of HIV-positive children who will reach adolescence.