Elizabeth Brackis-Cott, PhD1

Elizabeth Brackis-Cott, PhD1
HIV Prevention and Mental Health Risk Factors in Perinatally HIV-Infected Adolescents: Research-Based Implications for Intervention Claude Ann Mellins, Ph.D.1 Elizabeth Brackis-Cott, PhD1 Stacey Alicea, MPH1,2 1HIV Center for Clinical and Behavioral Studies NYSPI and Columbia University, N.Y. 2Mt Sinai School of Medicine, N.Y. Project funded by NIMH R01-MH63636 (PI Mellins) There have been tremendous advances in HIV treatment and care programs in the US and internationally. In any country as children and parents’ begin to live longer with the disease- they face a host of psychosocial issues- many of which get lost in their struggle to survive and our struggle to maintain their health and prevent further transmission of HIV Interventions to address psychosocial issues have been neglected or seen as secondary to life threatening issues. Yet ignoring them may undermine efforts to promote the well being of HIV+ youth, as psychosocial stressors may affect their ability to access and sustain economic, material, and health care resources. In the US we have learned this lesson the hard way- but over the past 20 years- there are lessons learned that may be important to those efforts internationally. We are going to focus on HIV-infected children – but the model is broader 1

The Family Studies Program
Commitment to understanding and improving the mental health and psychosocial needs of HIV-infected and HIV-affected children and their families Commitment to a research-clinical collaboration Commitment to bringing effective interventions from the US to low resource countries with the epidemic has devastated families I have to start by telling you that I am a clinical psychologist- and the boulder model that I got trained in- emphasizes a Commitment to clinical-research collaboration. The longer I work in this field- the more I really come to understand the importance of this model and of multidiscplinary teams of clinicans and researchers

Acknowledgements CASAH: Mental Health and Risk in HIV+ Youth and Seroreverters National Institute of Mental Health (R01-MH069133; PI C. Mellins, PhD) Team: E. Abrams, M. McKay, PhD, E. Brackis-Cott, Ph.D.; C. Dolezal, Ph.D.; E. Abrams, M.D.; A. Wiznia, Ph.D.; M. Bamji, M.D.;A. Jurgrau, C.P.N.P.; M. McKay, Ph.D., S. Alicea, MA, K. Elkington, PhD, J. Bauermeister, PhD, CS. Leu, PhD, K. Santamaria, Y. Ahmed, V. Escrogima, S. Marhefka, PhD Baseline data from an NIMH-funded RO1 Examining mental health and risk behavior in perinatally HIV-infected youth. This work is not possible with out multidisciplinary team of providers and researchers from multiple collaborating institutions 3

CHAMP+: Supporting HIV-infected youth and families
National Institute of Mental Health (1 R34 MH A1-02; PI M. McKay, PhD) Team: C. Mellins, PhD., E Abrams, MD, E Brackis-Cott, Ph.D., E Kang, Ph.D., S Marhefka, Ph.D., N Humphrey, Ph.D., D Minott, MPH, J Peterson, MSW, C Miranda, MSW, M Block, MA, G Pardo, MSW, R Hildebran, MPH, A Paulino, MSW, S Ali, MSW, K Dean, MSW, N Nalls, MSW, W Udell, Ph.D., M Hernandez, BA, J Floyd, BA 4

CHAMP+SA (NINR (R21 NR010474-01; PI C. Mellins, PhD )
US-Based Investigative Team Mary McKay, PhD, Co-Investigator Elaine J. Abrams, M.D., Co-Investigator Stacey Alicea, MPH, US-Based Program Director SA-Based Investigative Team Helga Holst, M.D., Co-Principal Investigator Sally, John, MA, McCord Clinical Liaison Arvin Bhana, Ph.D., Co-Investigator Inge Petersen, Ph.D., Co-Investigator Nonhlahle Myeza, SA-Based Program Director Divide into SA and US team

Pediatric HIV epidemic is now an adolescent epidemic in the US
With medical treatment advances- few new cases- but aging cohort In NYC by the end of 2005 (NYCDOHMH, 2005) among 2,474 perinatally HIV+ youth 112 (4%) are < 6 years 844 (34%) are ages 6-12 years 1,208 (49%) are years 268 (11%) are years St the stage- perinatal HIV infection in the US is becoming an adolescent epidemic due to tremendous advances in medical treatment that have reduced new cases < 1-2% and that have prolonged the lives of children not expected to reach adulthood 6

Who are HIV-Infected Youths in the US?
Reflection of HIV in women in the first 1 ½ decades of the epidemic: Confluence of HIV and substance abuse, in the context of urban stress and poverty 85% live in urban environments with chronic poverty and endemic substance abuse Ethnic minority status with family histories of racism and discrimination 7

Multigenerational Psychosocial Adversity
HIV often strikes families that have struggled for multiple generations with poverty, co-morbid substance use and mental health problems, and psychosocial stress. Children are at risk for: pre- and post-natal drug exposure urban stress and trauma, abuse and neglect, and domestic violence disruptions of placements leading to multiple separations from parents and caregivers 8

Case of Family A M.A. is a 34 year old Hispanic single mother with AIDS with history of abuse and trauma Husband was killed She has poor medical follow-up, untreated Mood disorder with Cocaine dependence Living in a shelter ACS involvement due to medical neglect of children C is the 12 year old son who has HIV and was prenatally drug exposed Special education Multiple absences from school and suspensions Behavioral problems “he’s hyper, disrespectful and has stopped taking his medications” The grandmother is an alcoholic who traffics drugs from her apartment and babysits on weekends

Current Situation: Aging HIV+ Youths
Born to women with substance use histories and prevalent heritable psychiatric disorders Experienced multiple environmental and social stressors Experienced an extended period of less than optimal HIV medical care (pre-HAART) Aging into developmental stage of presentation of psychiatric disorder, sexual and drug behavior, and social need to “fit in” This is every pediatricians worst nightmare Mental health problems, and psychosocial stressors, as well as parent-child difficulties have been identified by providers as critical barriers to adherence and optimizing youth health. When we began this work in no interventions models and limited basic research to inform treatment. Clinically- we had been very successful with this population until they hit adolescents. Wanted to understand how to focus our interventions 10

MENTAL HEALTH AND RISK BEHAVIOR IN HIV+ YOUTH (NIMH-R01-MH069133; PI Mellins)
Mellins, PhD; Abrams, MD; McKay, PhD; Brackis-Cott, PhD; Wiznia, MD; Bamji, MD. Study Design: Longitudinal determinants study of 350 perinatally HIV-exposed 9-16 year olds and their primary caregivers, recruited from 4 major NYC medical centers N= 200 HIV-infected and 150 uninfected youth Multidisciplinary team of psychologist, social workers, and medical providers

Study Goals Examine the association between HIV illness and mental health and behavioral health outcomes in adolescents adherence, sexual and drug use risk behavior Identify family and psychosocial risk and protective factors related to Behavioral Health Outcomes in both groups prospectively over 18 months. The questions really is- given all the stressors and biological risks for these youth- how do we know what is specific to HIV- while this may soon not be a critical question here- thousands of children are infected worldwide- understanding the role of HIV as well as family and psychosocial predictors of child outcomes will be critical to informing interventions

Modified Social Action Theory
CONTEXTUAL INFLUENCES SELF-REGULATION PROCESSES BEHAVIORAL OUTCOMES Demographics Child and caregiver age, gender, race, ethnicity Child development, school Caregiver type, employment, marital status, education Stress Urban stress and violence Other stressful life events Child Health/Medical Status HIV status Immune function (for HIV+ youth) Service utilization Caregiver Health/Medical Status General health Mental health, drug use Social Interactions Family communication HIV disclosure Peer normative beliefs Perceived illness stigma Social Interdependence Caregiver-child supervision, involvement, and relationship Motivation Future goals School motivation Self-esteem and body image Behavioral Health Outcomes Emotional and behavioral functioning Sexual risk behavior Drug and alcohol use ART adherence (for HIV+ youth) We adapted a model we had previously developed to study health outcomes in HIV+ women and urban adolescents affected by maternal HIV. What is most critical about this model is its focus on contextual and social influences on behavior. Most models focus on cognitive processes such as self regulation. This model allowed us to look at the social and familial and environmental context of youth’s lives- Capabilities Cognitive/language functioning Social problem solving Knowledge of reproductive health and STD/HIV transmission Child Psychiatric Disorder Presence of DSM-IV diagnoses 13

Baseline Procedures Participants recruited from 4 major medical centers in NYC serving inner-city populations: Harlem Hospital, Jacobi Medical Center, NYPH, and Metropolitan Hospital. Each youth and primary caregiver is interviewed individually at baseline and 18 month follow-up. Each time point is divided into 2 session (1-2 hours each) Participants are reimbursed for time and transportation. 60% 14

Outcome Variables Child Psychiatric Disorders: The Diagnostic Interview Schedule for Children (DISC, Shaffer, et al., 1996) Child Emotional and Behavioral Functioning: Child Depression Inventory (Kovacs, 1981) The Child Behavior Checklist-Parent Version (Achenbach , 1991) Substance Abuse (DISC) 15

Outcome Variables (cont.)
Child Sexual Behavior: ACASI or face to face interview (Dolezal, Mellins, et al.) Adherence: modified ACTG procedures (Chesney et al., 2000; Mellins et al. 2002). % pills missed over 2 days (according to caregiver or child) Missed pills in the past month (yes vs no according to caregiver or child) Mention that both outcome variables have been previously validated when compared to viral load in adults and children 16

Measures of Independent Variables
Child Health Status: Medical Chart abstraction Stress: City Stress Inventory (Ewart & Suchday, 2002) and Stressful Life Events (Mellins et al) Caregiver Mental Health: Beck Depression Inventory (Beck & Beck, 1972); State-Trait Anxiety Inventory-trait (Spielberger, 1987) Caregiver-child Relationship: Supervision and Involvement Scale (Loeber et al., 1991) Parent Child Relationship Inventory (Gerard, 1994) Child Cognitive Function; The Peabody Picture Vocabulary Test-III (Dunn & Dunn, 1997) Perceived Peer norms (Bauman procedure) Go over quickly- just headers 17

Participants Enrolled and Baseline session 1 completed
206 HIV+ children and 133 HIV- (97%) Baseline session 1 and 2 completed 195 HIV+ and 127 HIV- children completed 2 sessions of Baseline (92%) Follow-up 85% HIV+ kids 58% HIV- kids 18

Baseline Data: (206 HIV+ and 133 HIV-)
Age: 9-16 yrs (51% 9-12 yrs; 49% yrs) Gender: n= 173 girls; 166 boys Race/ethnicity: 54% African American; 31% Latino; 15% Other/Mixed Caregivers: only 50% birth parent; 46% HIV + Household income: 57% of sample = < 25K Cognitive function: 52% < 20% on PPVT Health: 64% have detectable viral load (> 400) Disclosure: 69% formally told diagnosis All but 1 child 14 years and older knew diagnosis; 80 % < or = 11 19

Results: Child Psychiatric Disorders
61% HIV+ youths vs 49% HIV- youths (OR=1.61., p <.05) Primarily anxiety (46%; sep. anx.; agor.;ocd; phobias) and behavioral (25%, ADHD, ODD) disorders HIV+ youths had significantly higher rates of ADHD (OR=2.78, p < .01). In accordance with primary hypothesis- having perinatal HIV infection leads to increased risk for mental health problems above and beyond the familial and environmental stressors they share with uninfected youth from families affected by HIV 20

Variables Associated with Youth Psychiatric Disorder
Caregiver mental health problems associated with presence or absence of any psych. disorder depression (t= -3.16, p = .002) anxiety (t = -2.87, p = .004) Youth Age associated with behavioral dx Older (OR=2.00; CI=1.21,3.29; p = .01) Caregiver variables associated with less ADHD living with biological parents (OR=.50, p=.03), HIV+ caregivers (OR=.38, p=.01), caregivers with lower education levels (OR=1.15, p=.01). However, strong association between caregiver variables and youth HIV status However, unifnected youth also had high rates of psychiatric disorder and across the full sample there were other family and psychosocial variables related to mental health outcomes. Focusing on psychiatric disorder- Caregiver mental health, caregiver-child relationship factors and stressful life events were all associated with presence or absence of a psych diosrder No association with demographics, cognitive function, urban stress, parental communication, involvement, supervision, monitoring and child autonomy

Results: Substance Abuse
Limited Substance Abuse in both groups 4 HIV+ youth vs 8 HIV- youth Alcohol abuse disorder: 2 HIV+ and 1 HIV- youth met criteria Marijuana abuse disorder: 3 HIV+ vs 5 HIV- met criteria 3% Numbers too small to do any comparisons. But this is Abuse- not use 22

Substance Use (Elkington et al. 2008, submitted to IAC)
Alcohol and Marijuana use associated with all sex risk behaviors: oral, vaginal or anal sex, unprotected vaginal sex, multiple partners After adjusting for the effect of peer norms: Alcohol use only associated with oral sex Marijuana use remained a predictor of all behaviors accept vaginal/anal sex After adjusting for the effect of parental involvement: The association between alcohol use and some sex risk behaviors remained  oral sex, vaginal/anal sex The association between marijuana and most sex risk behaviors disappeared Findings did not vary by HIV status Irrespective of HIV status, perinatally-exposed youth who use substances are more likely to engage in sexual risk behaviors. The differential effect of peer norms and parental involvement on the relationship between substance use and sexual activity differs depending on the substance, and may be an effective focus of preventive interventions for this population. 23

Lifetime Sexual Behavior
Onset of Sexual Behavior (vaginal, oral, or anal) 10% of HIV+ youths 14% of HIV- youths (p=ns) Primarily heterosexual/vaginal sex; limited same sex behavior reported 28% of HIV+ and 40% of HIV- youth who reported vaginal sex reported unprotected sex (p=ns) Mean age of onset: 12.0 yrs (HIV+) vs 13.4 (HIV-) (p = .038)

Variables Associated with Vaginal Sex
Demographics: Older age (t = , p < .001) More Stress: City stress (t = -7.04, p < .001) Caregiver-child relationship less parental involvement (t = 2.47, p = .014) less child autonomy (t = 2.59, p = .010) less supervision (t = 3.28, p = .002) No association with child gender, child cognitive function, child or caregiver mental health, caregiver-child communication

Sexual Behavior (cont.) (Bauermeister, Elkington et al, 2008, IAC submission)
Youths’ sexual behaviors varied: 58% none 35% reported kissing, 17% reported touching, 7% reported oral sex, and 11% reported vaginal or anal intercourse. HIV+ youth reported more touching (OR=3.65) and less vaginal or anal intercourse (OR=.22) than HIV- youth. 26

Lifetime Sexual Behavior (Bauermeister, Elkington et al, 2008, IAC submission)
Touching was associated with Permissive peer norms regarding substance use (OR=3.36) Having friends who thought sexually-active boys were popular (OR=2.72) Oral/anal Intercourse was associated with Permissive peer norms re: substance (OR=2.24) Having sexually-active friends (OR=6.19) Conclusions : Sexually-active PI youth may delay the onset of intercourse through touching behavior. Peer norms play a role in PHIV+ youth’s sexual exploration and should be addressed within interventions for this population. Prevention programs should strengthen messages addressing peer norms regarding substance use and sexuality, as well as address specific issues related to adolescent HIV. 27

Adherence 35% of youth are not currently on ART
Among the 164 youths on ART: 19% non-adherent in the past 2 days 56% non-adherent in the past month Non-adherence (month) significantly associated with: youth mental health (more internalizing and externalizing behavior problems) family factors (less parental communication and supervision, caregiver HIV status) onset of sexual behavior Not associated with gender, age, city stress, child or caregiver depression or anxiety, cognitive function

Summary and Conclusions
High rates of psychiatric disorders in both HIV+ and HIV- youths Significantly greater rates in HIV+ youths Early onset of sexual behaviors among those who are sexually active Health risk behaviors coincided For HIV + youth mental health, sexual behaviors, and non-adherence were associated with each other. Mention HIV-The HIV-exposed, but uninfected children were also at high risk for psychiatric disorders and had similar rates of sexual behavior. This group is often lost to health care systems, but are also at risk for poor mental health outcomes.

Summary and Conclusions (cont’d.)
Public Health Concern Highly ART-experienced children typically harbor multi-resistant virus Coupled with poorer adherence, cognitive and behavioral problems, and early sexual activity, concern for poor individual health outcomes and transmission of highly resistant virus Particularly in boys who engaging in sexual behavior earlier and have higher rates of non-adherence

Summary and Conclusions (cont’d.)
Family and peer-based Mental health and other risk preventive interventions are needed. Integrating mental health services into medical clinics may help address health and psychosocial needs. However: it is unclear what works. How does this information translate into interventions long term? Given stigma of both HIV and mental health treatment – how do we reach these families? HIV-affected youth are often difficult to target and lost to health care systems. What do we do?

Future Directions Develop models of mental health and health that focus on both risk and resilience as youth transition through adolescents Not all youth and families had poor outcomes As these youth begin to age into late adolescents and young adulthood- who does well? How does this inform our understanding of adolescent development and transition, particularly for vulnerable populations or populations coping with chronic health conditions-CASAH 2 For early adolescents- develop efficacy-based interventions that help families address multiple youth needs (e.g., adherence, mental health, sexual development). Most studies of adolescent development are with European American middle class samples- few actually follow youth through adolescents into young adulthood- A number of people have successfully argued that programs and policies must be derived from appropriate research focused on the target population and the group’s developmental and environmental circumstances

CHAMP+: Supporting HIV-infected youth and families
National Institute of Mental Health (1 R34 MH A1-02) Principal Investigators: Mary McKay, Ph.D., Claude Mellins, Ph.D., Elaine Abrams, M.D. So in addition to what we were starting to see in CASAH, Elaine Abrams, the head of large pediatric HIV clinic- approached Claude and I about the prevention needs of her clinic- And I want to point out the importance of this Clinical-Research partnership and about building trust. So back when Elaine approached us, Claude and I were both clinicians at the Special Needs Clinic, an outpatient mental health clinic at NYPH for families affected by HIV/AIDS and I was also actively engaging families at FCC at Harlem and trying to get them into mental health treatment. The staff at FCC trusted us to have the best interest of their patients in mind and to truly look for clinically meaningful information in our research. And in these clinics who have been treating the same kids for up to 20 years, the more the staff trusts you, the more the families trust you and the more successful your endeavors will be. So at the time, the biggest issue at FCC and the other clinics we ultimately collaborated with was that kids and caregivers wanted to talk about sex- but didn’t know how

CHAMP CHAMP+ draws upon an evidence-based HIV prevention program developed for inner-city pre-and early adolescents and their families, the CHAMP Family Program (McKay et al., 2000). CHAMP= Collaborative HIV Prevention and Adolescent Mental Health Program. Goal= promote resilience in uninfected inner-city youth and their families at pre- and early adolescence (prior to the onset of sexual activity). So Claude thought of Mary McKay and her work with CHAMP and yet another beautiful collaboration began. So our CHAMP+ Family Program draws upon an evidence-based HIV prevention program developed for inner-city pre- and early adolescents and their families. CHAMP stands for the Collaborative HIV Prevention and Adolescent Mental Health Program With the goal of serving the communities most effected by this epidemic The program aims to promote resilience in uninfected youth and families by bolstering key processes and skills related to youth risk taking behaviors prior to initiation of such behaviors. And it does this by addressing traditional barriers to community based interventions via its use of Community-Based Participatory Methods. Which I’ll get into more details as I walk you through the CHAMP+ Program COmmunitity members for each trial become full partners in developing the intervention, implementing it, and writing about it, and ultimately they take ownderhips of it

CHAMP Description CHAMP attempts to bolster key family and youth processes related to youth risk taking behaviors by providing opportunities for youth and their parents to strengthen communication skills and family decision-making skills CHAMP attempts to bolster key family and youth processes related to youth risk taking behaviors by providing opportunities for youth and their parents to strengthen communication skills and family decision-making skills

CHAMP Description (cont.)
Helping parents take leadership in aspects of family life that offer youth protection, such as supervision and monitoring of peer relations, and youth whereabouts and activities Increasing the youths’ social problem-solving and peer-negotiation skills, particularly in situations of sexual possibility. And by Helping parents take leadership in aspects of family life that offer youth protection, such as supervision and monitoring of peer relations, and youth whereabouts and activities And increasing youths’ social problem-solving and peer-negotiation skills, particularly in situations of sexual possibility.

CHAMP Description (cont.)
CHAMP is a multiple family-based group intervention, consisting of 12 sessions Approximately, 10 families are included in each group A combination of multiple family group sessions and separate parent and child group sessions are used Family group goal = promoting communication and support both within and between families (e.g. M & M and Newlywed games) CHAMP is a multiple family-based group intervention, consisting of 12 sessions Approximately, 10 families are included in each group A combination of multiple family group sessions and separate parent and child group sessions are used Family group goal = promoting communication and support both within and between families (e.g. M & M and Newlywed games)

CHAMP GOALS Goal of separate adult/child groups sessions =
For parents: support from other parents, and frank discussion of strategies for supervision and monitoring, as well as chances to discuss information and communication strategies separately from their children. For children: developing peer supports, as well as peer pressure negotiation skills to assist in recognizing different types of risk situations, and navigating such situations. CHAMP recognizes- that kids and adults have separate needs as well family based needs Goal of separate adult/child groups sessions = For parents: to gain support from other parents, and to engage in frank discussion of strategies for supervision and monitoring, as well as chances to discuss information and communication strategies separately from their children. For children: to develop peer supports, as well as peer pressure negotiation skills to assist in recognizing different types of risk situations, and navigating such situations.

CHAMP Outcome Data Post-intervention data from several randomized clinical trials Significant changes in Family-level variables (family decision making; HIV knowledge; communication comfort); Caregiver monitoring and supervision Youth exposure to sexual possibility situations Post-intervention data from several randomized clinical trials in both Chicago and NYC revealed Significant changes in Family-level variables including family decision making; HIV knowledge; communication comfort. And significant changes in caregiver monitoring and supervision , and consequently youth exposure to sexual possibility situations

CHAMP+: Phase 1 A key aspect of CHAMP that increases the likelihood of cultural and contextual sensitivity is that, for each site in which CHAMP is implemented, consumers oversee the design of the program, are involved in aspects of research activities. Thus, Phase 1 of CHAMP+ involved collaborating with consumers and staff of FCC at Harlem Hospital to design CHAMP+. A key aspect of CHAMP that increases the likelihood of cultural and contextual sensitivity is that, for each site in which CHAMP is implemented, Consumers, and in our case consumers included clinicians, parents, and youth, oversee the design of the program and are involved in aspects of research activities. Thus, Phase 1 of CHAMP+ involved collaborating with consumers and staff of FCC at Harlem Hospital to design CHAMP+.

The Development of CHAMP+: Phase 1
With a pilot grant from the HIV Center for Clinical and Behavioral Studies in caregivers of perinatally HIV-infected youth and 3 teenagers met with research staff over 6 months to: identify salient issues related to HIV, family life, and youth development and risk; review existing CHAMP family Program to assess appropriateness of content and format and develop new intervention content discuss feasibility issues FCC staff also met with research staff to review intervention content, and the feasibility of integrating a test of CHAMP+ into FCC’s service delivery system. Our research team was fortunate to receive funding from the HIV Center’s pilot grant program to adapt the CHAMP Family Program for use with perinatally HIV-infected youth and their caregivers in collaboration with participating clinic consumers and staff. We met with 5 caregivers and 3 HIV+ teenagers over 6 months to: identify salient issues related to HIV, family life, and youth development and risk; review existing CHAMP Family Program materials to assess appropriateness of content, format, etc.; and develop new intervention content based upon perceived needs. In addition, we met with clinic staff to gather input on intervention content and feasibility of integrating a test of CHAMP+ into the clinic’s existing service delivery system.

CHAMP+ Family Program The CHAMP+ curriculum is focused on:
1) the impact of HIV on the family; 2) loss and stigma associated with HIV disease; 3) HIV, health, and antiretroviral medication protocols; 4) family communication about puberty, sexuality and HIV; 5) parental supervision and monitoring related to sexual possibility situations and sexual risk taking behavior, as well as helping youth manage their health and medication; 6) social support and decision making related to disclosure. What came out of those meetings was a CHAMP+ curriculum that focused on: 1) the impact of HIV on the family; 2) loss and stigma associated with HIV disease; 3) HIV, health, and antiretroviral medication protocols; 4) family communication about puberty, sexuality and HIV; 5) parental supervision and monitoring related to sexual possibility situations and sexual risk taking behavior, as well as helping youth manage their health and medication; 6) social support and decision making related to disclosure.

CHAMP+ Development: Phase 2
We conducted a pilot test of one trial of CHAMP+ at FCC at Harlem Hospital. Six families with a child, ages 9-13 years, who knew his/her diagnosis agreed to participate. Five of the six families were able to attend CHAMP+ meetings regularly (more than twice) and all six caregiver/youth dyads completed research interviews. Research interviews consisted of a qualitative interview administered after the intervention. So next we took our curriculum and conducted a pilot test of one trial of CHAMP+ at FCC. We had 6 families participate all of whom had a perinatally HIV-infected child 9-13 years, who was aware of his/her status. Five of the six families were able to attend CHAMP+ meetings regularly (more than twice) and all six caregiver/youth dyads completed qualitative research interviews at the end of the intervention.

CHAMP+ Family Program (cont.)
CHAMP+ was delivered using the same format as CHAMP with both multiple family sessions and separate parent/child group sessions. The pilot consisted of 10 sessions. Four facilitators led each session. Each session began with a group dinner to increase comfort, group cohesiveness, and attendance. Child care, transportation were provided and participants were compensated for their time. CHAMP+ was delivered using the same format as CHAMP with both multiple family sessions and separate parent/child group sessions. The pilot consisted of 10 sessions. Led by 4 facilitators. The facilitators included mental health clinicians, given the level of suspected psychopathology and difficulty of topics up for discussion, as well as FCC staff. And this was important for potential sustainability of the intervention. Each session began with a group dinner to increase comfort, group cohesiveness, and attendance. Child care and transportation were provided and participants were compensated for their time.

CHAMP+: Preliminary Findings
There is a need to address issues that are specific to HIV before interventions related to family processes, such as family communication, can proceed; Stigma and secrecy associated with HIV (e.g. disclosure) were raised in the first session. Both youth and their adult caregivers need the opportunity to ask questions about medical procedures and medications in addition to the information that their doctor provides. Assumptions that families retain medically related information were incorrect. Preliminary findings from qualitative interviews revealed that there was a need to address issues specific to HIV ( like stigma and disclosure) right away, even in the first session, before interventions related to family processes, such as family communication, can proceed; The interesting thing is that the initial consultations with consumers told us the same information, but we thought that it would be too difficult to discuss such sensitive topics right away, that we would need to warm them up first, allow them to get to know each other and trust each other, but Stigma and secrecy associated with HIV (e.g. disclosure) were raised in the first session. And it didn’t matter what was on our agenda, it was paramount for these families. We also learned that both youth and their adult caregivers need the opportunity to ask questions about medical procedures and medications in addition to the information that their doctor provides. FCC is an excellent clinic and we know that the doctors and nurses are reviewing this information with the families at every appt, for many this means a monthly bases, yet, the families cannot seem to retain medically related information.

CHAMP+: Preliminary Findings (cont.)
Adult participants reported an increase in family communication, social support from others affected by HIV, enhanced caregiver/child relationships, and increased awareness of their child’s needs as a result of participation. Youth reported that CHAMP+ was a safe place to ask questions about HIV and meet other infected youth. CHAMP+ was well received: the families made an attempt to keep their group in place, led by a permanent staff member at FCC. Caregivers reported an increase in family communication and social support from others affected by HIV, enhanced caregiver/child relationships, and increased awareness of their child’s needs as a result of participation. Youth reported that CHAMP+ was a safe place to ask questions about HIV and meet other infected youth. So overall, CHAMP+ was well received: in fact, the families made an attempt to keep their group in place, led by a permanent staff member at FCC. Which ultimately became FCCs CAB

CHAMP+ Pilot Clinical Trial (1 R34 MH072382 01A1-02)
N= 60 caregiver-child (9-14 yrs) dyads receiving care at 3 pediatric HIV clinics in NYC (Harlem, NYPH, Mt Sinai) are randomly assigned to: CHAMP+; or Standard of care with the opportunity to participate in CHAMP+ at the end of the study Both groups assessed at pre-test, post-test and 3-month follow-up HIV knowledge, strengths and difficulties, family rules and discipline, medication adherence, parent-child relationship, social support, sexual possibility situations, substance use, stigma, social disclosure, depression, and self-esteem So we could tell that we were on to something good and we were fortunate to receive funding from NIMH to conduct a small clinical trial of CHAMP+. So the plan was to recruit 60 caregiver-child dyads from 3 pediatric HIV clinics (Harlem, NYPH and Mt. Sinai) to be randomly assigned to receive either the CHAMP+ intervention or standard of care followed by the opportunity to participate in CHAMP+ at the end of the study. Both groups were assessed before the intervention, immediately after and 3 months later. Mental health and family process assessments included HIV knowledge, strengths and difficulties, family rules and discipline, medication adherence, parent-child relationship, social support, sexual possibility situations, substance use, stigma, social disclosure, depression, and self-esteem

Refining the CHAMP+ Curricula to Meet Site-Specific Needs
Revision of curriculum content (e.g., additional activities/handouts, reordering sessions, reallocating time spent on selected themes, substantial development of youth curriculum) Creation of a new session to allow caregivers to “tell their stories about HIV” Renaming the intervention at one site, to help promote site ownership of the program Exploring the needs of Spanish-speaking consumers Prior to starting the program, at each site, clinic consumers and providers met with the researcher team to review and further refine the adapted curriculum to meet site-specific needs. These revisions included additional activities/handouts, reordering sessions, reallocating time spent on selected themes, substantial development of youth curriculum) We created a new first session to allow caregivers to “tell their stories about HIV” , At NYPH, we actually had the consultants rename the intervention to help promote site ownership of the program An again, at NYPH, we spent time exploring the needs of Spanish-speaking consumers

Where are we now? Clinic 1:
Completed consumer and staff consultation meetings Completed the first intervention group & assessments Completed the second intervention group & assessments Clinic 2: Conducted individual qualitative interviews with Spanish-speaking consumers Clinic 3: In the process of planning for implementation of consultation meetings So, so far we have completed 2 rounds of the CHAMP+ intervention at our first site, Harlem Hospital, including consultation meetings with consumers and staff as well as the intervention curriculum, and we have collected the Pre, Post, and FU assessments. At our second site, NYPH, we have completed the first round of CHAMP+. At this site, we encountered a large Spanish-Speaking population who were hesitant to participate in a group intervention. We wound up conducting individual qualitative interviews with Spanish Speaking caregivers and their children to better understand what type of program might better meet their needs. These interviews are being transcribed and analyzed. And we are currently meeting with our third site, Mt. Sinai, and are in the process of planning for implementation of consultation meetings

Concluding Thoughts Needs of this population are substantive and not easily addressed in short term interventions Challenges of implementing efficacy-based interventions in medical clinics, even with mental health provider Healthy respect for the challenges these families face that were barriers- medical illness, substance abuse, snow storms, lack of funds Preliminary qualitative data indicate positive response from both families and clinic staff Concluding thoughts, We are fully aware that the needs of this population are substantive and not easily addressed in short term interventions, but it is well worth the effort to try We are now much more aware of the challenges of implementing efficacy-based interventions in medical clinics, even with mental health providers as facilitators. For example, we learned a lot about how to manage adolescent behavior and still make it through the curriculum. The importance of having 2 facilitators per group. And we have a healthy respect for the challenges these families face that can be barriers to this form of intervention or treatment in general- obviously this is a medically compromised population, both due to HIV disease and for some caregivers old age, we had one caregiver suffer a stoke, another relapsed into substance abuse treatment half way through, another caregiver was drinking alcohol before coming to group, one youth was jumped on his way to group and missed half while being seen at the ER, and this is all on top of the typical snow storms, lack of funds etc… However, the preliminary qualitative data indicate positive response from both families and clinic staff And we are excited to complete the trial at our third site and start to look at our quantitative data.

Adapting CHAMP+ for South Africa: Supporting HIV-Infected Youth and Families (R21 NR ; PI C. Mellins, PhD) Treatment Advances that reduce mother to child HIV transmission are eradicating the pediatric HIV epidemic in the US- not so in low resource countries with limited access to treatment

Background South Africa (SA) has one of the highest rates of HIV infection in the world with unprecedented numbers of perinatally HIV-infected children With increased access to ART- youth will survive into older childhood and adolescence Although the populations of children may be different in the US and South Africa, both groups must cope with HIV as a chronic, potentially terminal, and highly stigmatized illness Furthermore, pediatric HIV in the US and South Africa is most prevalent in families living in impoverished urban communities, often affected by family disruption and loss Interventions that are able to incorporate cultural and contextual influences, as well as recognize familial and individual strengths that can reduce youth risk are sorely needed.

Background (cont) Interventions to promote mental health and health, as well as reduce risk behavior are urgently needed Preventive interventions for children from other populations have been most successful when they incorporate cultural and contextual influences, and capitalize on individual and family strengths prior to the emergence of risk behavior Adapting CHAMP model for SA is an avenue worth exploring given its focus on family strengths, and community based participation in development

CHAMPSA Funded by National Institute for Mental Health
Established collaborative boards in Cato Manor & Kwadedangendlale: Both high risk communities for HIV infection (i.e. isolation, poverty, poor transportation, poor educational structure, low literacy, high AIDS death rates, crime, poverty, etc.) Adapted the CHAMP Family Program to fit the socio- cultural context of South Africa Evaluated SA version of CHAMP with pre-adolescents and their families in two communities 54

CHAMPSA Format Cartoon format was used for adaptation of CHAMP to CHAMP South Africa (CHAMPSA): Cartoons contain anxiety by providing distance from sensitive topics/issues typically taboo to discuss Participants explore the narrative through discussion Facilitates the development of critical consciousness and health enhancing social practices Allows research team to address literacy concerns in regards to curriculum content Was well received by CHAMPSA community participants

Facilitating discussion of sensitive topics
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CHAMP+SA Grant submission
This proposal responds to RFA-NR , entitled “Culturally Appropriate Research to Prevent HIV Transmission and Infection to Young People (R21)” Goal of RFA: Encourage projects that focus on developing prevention intervention programs for young people, including those already HIV+ Transfer successful HIV prevention interventions across cultures We proposed and were funded to adapt and pilot test CHAMP+SA for a medical setting in South Africa

CHAMP+SA Specific Aims (NINR R21 NR010474-01; PI Mellins )
Adapt a family-based intervention based on the CHAMP family program (CHAMP+SA) for South African HIV-infected 9-13 year olds and their caregivers to be delivered in a SA medical setting. (Due to the lack of data on transmission routes, high prevalence of abuse, all HIV infected youth will be recruited, regardless of route of transmission)

Specific Aims (cont) Factors that influence adaptation:
Examine process by which CHAMP+SA intervention is created for a medical setting: Factors that influence adaptation: Setting, time, space, financial resources, etc. Use of nurses/HIV counselors as facilitators Perceptions of impact of HIV on SA family life & parenting Family communication Gender and age/developmental stages issues

Specific Aims (cont) Examine the preliminary impact of CHAMP+SA on short term proximal outcomes: Youth process (coping, HIV knowledge, self esteem) Family/social process (communication, support, supervision) Youth behavioral health outcomes (mental health, medication adherence & participation in situations of sexual & drug use possibility)

Specific Aims (cont) Estimate intervention parameters for a larger scale clinical trial: Study population means Prevalence Variances & correlations with key exploratory factors Attrition & response rates

Specific Aims (cont) Examine factors influencing the implementation of CHAMP+SA: Caregiver/youth response to program: satisfaction & acceptability Cultural/ contextual factors Barriers/facilitators to program delivery Role of nurses/providers in psychosocial care Training/support needs

Specific Aims (cont) How feedback from consultants is used to inform CHAMP+SA Choices made regarding intervention: Content Structure Intervention delivery

Methods Two year project, 2 phases. Phase 1: Intervention Adaptation.
Year 1 will be devoted to the adaptation of the CHAMP+ program for a SA medical setting: McCord Hospital, located in Durban in Kwazulu Natal Specific Aim 1: Adapt the intervention curriculum, manual, theoretical model and study procedures using a community collaborative process, involving the investigators, consumer consultants, & providers from McCord Hospital. Kwazulu-Natal has one of the highest rates of HIV sero-prevalence in Africa and an incredibly large HIV treatment program partially funded by PEPFAR. The head of hospital is SA PI.

Phase 1: Process Document emerging issues (qualitative data collection) & program development processes Reach internal consensus on intervention content & process Re-write intervention curriculum

Phase 1: Process Consumer consultants (caregiver/youth dyads) will be recruited to work on development of CHAMP+SA program: Identify significant challenges for HIV+ youth and caregivers Discuss beliefs and attitudes about psychosocial issues and interventions Review existing CHAMP curriculum (CHAMPSA,CHAMP+) Consider how CHAMP needs to be adapted to meet the needs of South African families

Phase 1: Process (cont.) Provider consultants will meet to:
Review patient needs Discuss current psychosocial interventions Identify programmatic barriers & facilitators: Staff time, space constraints, scheduling Need for coordination of intervention activities in the clinic context Consider how and by whom CHAMP should be delivered

Proposed Process (L) vs. Adapted Process (R)
Consumer consultants will be recruited to meet as a group over an 8-10 week period to work on development of program Provider/clinic staff will also meet to identify programmatic barriers & facilitators Consumer consultants will be recruited to participate in 1-2 group sessions and 1-2 individual in-depth interviews Providers will also meet for 1-2 sessions and 1-2 individual in-depth interviews How did we get here – intensive week of meetings Explain why the changes made- already had intensive week in SA and weekly contact with the site- IRB and ethics done, changes made ot address Ethics committee concerns, provider concerns about time constraints, clinic policies of childrne not missing school, etc Consumers will: Review existing curriculum, explore salient themes, use of language & methods of intervention in local SA context Providers will: Review staff time, space constraints, scheduling, need for coordination of intervention activities in clinic context Monthly meetings via “Skype” will take place with all staff at McCord Hospital, NYSPI, MSSM, and HSRC

Methods: Phase 2 Phase 2: CHAMP+SA Pilot.
In Year 2, we will conduct a pilot trial of CHAMP+SA with 30 children living with HIV (ages 9-13 years) and their primary adult caregivers (HIV+ or HIV-). Participating families will be randomized to intervention (n=20)or delayed intervention conditions (n=10).

Phase 2: Desired Outcomes
Qualitative: collect data on barriers and facilitators of adaptation process Quantitative: Obtain statistical information to inform larger grant-funded study Observe preliminary impacts of intervention on: Youth emotional and behavioral functioning Medication adherence Sexual Possibility Situations Family social support & communication Caregiver monitoring & supervision

Desired Outcomes (con’t)
Build upon existing collaborative partnership with SA counterparts – consumers, providers, and staff Develop a “real world” program for a “real world” setting (i.e. flexible, sustainable, etc.) Engage clinic consumers and staff in a collaborative process  create a sense of ownership in the program Process experience to inform guidelines for adapting preventive interventions in low-resource settings

Elizabeth Brackis-Cott, PhD1

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