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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, PhD 1 Stacey Alicea, MPH 1,2 1 HIV Center for Clinical and Behavioral Studies NYSPI and Columbia University, N.Y. 2 Mt Sinai School of Medicine, N.Y. Project funded by NIMH R01-MH63636 (PI Mellins)
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Page 1: HIV Prevention and Mental Health Risk Factors in Perinatally HIV- Infected Adolescents: Research-Based Implications for Intervention Claude Ann Mellins,

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 StudiesNYSPI and Columbia University, N.Y. 2Mt Sinai School of Medicine, N.Y.Project funded by NIMH R01-MH63636 (PI Mellins)

Page 2: HIV Prevention and Mental Health Risk Factors in Perinatally HIV- Infected Adolescents: Research-Based Implications for Intervention Claude Ann Mellins,

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

Page 3: HIV Prevention and Mental Health Risk Factors in Perinatally HIV- Infected Adolescents: Research-Based Implications for Intervention Claude Ann Mellins,

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

Page 4: HIV Prevention and Mental Health Risk Factors in Perinatally HIV- Infected Adolescents: Research-Based Implications for Intervention Claude Ann Mellins,

CHAMP+: Supporting HIV-infected youth and families

National Institute of Mental Health (1 R34 MH072382 01A1-02; 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

Page 5: HIV Prevention and Mental Health Risk Factors in Perinatally HIV- Infected Adolescents: Research-Based Implications for Intervention Claude Ann Mellins,

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

Page 6: HIV Prevention and Mental Health Risk Factors in Perinatally HIV- Infected Adolescents: Research-Based Implications for Intervention Claude Ann Mellins,

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 13-19 years• 268 (11%) are 20 -24 years

Page 7: HIV Prevention and Mental Health Risk Factors in Perinatally HIV- Infected Adolescents: Research-Based Implications for Intervention Claude Ann Mellins,

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

Page 8: HIV Prevention and Mental Health Risk Factors in Perinatally HIV- Infected Adolescents: Research-Based Implications for Intervention Claude Ann Mellins,

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

Page 9: HIV Prevention and Mental Health Risk Factors in Perinatally HIV- Infected Adolescents: Research-Based Implications for Intervention Claude Ann Mellins,

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

Page 10: HIV Prevention and Mental Health Risk Factors in Perinatally HIV- Infected Adolescents: Research-Based Implications for Intervention Claude Ann Mellins,

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”

Page 11: HIV Prevention and Mental Health Risk Factors in Perinatally HIV- Infected Adolescents: Research-Based Implications for Intervention Claude Ann Mellins,

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

Page 12: HIV Prevention and Mental Health Risk Factors in Perinatally HIV- Infected Adolescents: Research-Based Implications for Intervention Claude Ann Mellins,

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.

Page 13: HIV Prevention and Mental Health Risk Factors in Perinatally HIV- Infected Adolescents: Research-Based Implications for Intervention Claude Ann Mellins,

Modified Social Action Theory

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

Motivation• Future goals• School motivation• Self-esteem and body

image

Capabilities• Cognitive/language

functioning• Social problem solving• Knowledge of

reproductive health and STD/HIV transmission

Child Psychiatric Disorder

• Presence of DSM-IV diagnoses

Social Interdependence• Caregiver-child

supervision, involvement, and relationship

Behavioral Health Outcomes

• Emotional and behavioral functioning

• Sexual risk behavior• Drug and alcohol use• ART adherence (for HIV+

youth)

CONTEXTUAL INFLUENCES

SELF-REGULATION PROCESSES

BEHAVIORAL OUTCOMES

Page 14: HIV Prevention and Mental Health Risk Factors in Perinatally HIV- Infected Adolescents: Research-Based Implications for Intervention Claude Ann Mellins,

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.

Page 15: HIV Prevention and Mental Health Risk Factors in Perinatally HIV- Infected Adolescents: Research-Based Implications for Intervention Claude Ann Mellins,

Outcome Variables Child Psychiatric Disorders: The Diagnostic

Interview Schedule for Children (DISC, Shaffer, et al., 1996)

Child Emotional and Behavioral Functioning:1) Child Depression Inventory (Kovacs,

1981)2) The Child Behavior Checklist-Parent

Version (Achenbach , 1991)

Substance Abuse (DISC)

Page 16: HIV Prevention and Mental Health Risk Factors in Perinatally HIV- Infected Adolescents: Research-Based Implications for Intervention Claude Ann Mellins,

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)

Page 17: HIV Prevention and Mental Health Risk Factors in Perinatally HIV- Infected Adolescents: Research-Based Implications for Intervention Claude Ann Mellins,

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)

Page 18: HIV Prevention and Mental Health Risk Factors in Perinatally HIV- Infected Adolescents: Research-Based Implications for Intervention Claude Ann Mellins,

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

Page 19: HIV Prevention and Mental Health Risk Factors in Perinatally HIV- Infected Adolescents: Research-Based Implications for Intervention Claude Ann Mellins,

Baseline Data: (206 HIV+ and 133 HIV-)

Age: 9-16 yrs (51% 9-12 yrs; 49% 13-16 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

Page 20: HIV Prevention and Mental Health Risk Factors in Perinatally HIV- Infected Adolescents: Research-Based Implications for Intervention Claude Ann Mellins,

Results: Child Psychiatric Disorders Child Psychiatric Disorder

• 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).

Page 21: HIV Prevention and Mental Health Risk Factors in Perinatally HIV- Infected Adolescents: Research-Based Implications for Intervention Claude Ann Mellins,

Variables Associated withYouth 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

Page 22: HIV Prevention and Mental Health Risk Factors in Perinatally HIV- Infected Adolescents: Research-Based Implications for Intervention Claude Ann Mellins,

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

Page 23: HIV Prevention and Mental Health Risk Factors in Perinatally HIV- Infected Adolescents: Research-Based Implications for Intervention Claude Ann Mellins,

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

Page 24: HIV Prevention and Mental Health Risk Factors in Perinatally HIV- Infected Adolescents: Research-Based Implications for Intervention Claude Ann Mellins,

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)

Page 25: HIV Prevention and Mental Health Risk Factors in Perinatally HIV- Infected Adolescents: Research-Based Implications for Intervention Claude Ann Mellins,

Variables Associated with Vaginal Sex Demographics:

• Older age (t = -10.80, 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

Page 26: HIV Prevention and Mental Health Risk Factors in Perinatally HIV- Infected Adolescents: Research-Based Implications for Intervention Claude Ann Mellins,

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.

Page 27: HIV Prevention and Mental Health Risk Factors in Perinatally HIV- Infected Adolescents: Research-Based Implications for Intervention Claude Ann Mellins,

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)

Page 28: HIV Prevention and Mental Health Risk Factors in Perinatally HIV- Infected Adolescents: Research-Based Implications for Intervention Claude Ann Mellins,

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

Page 29: HIV Prevention and Mental Health Risk Factors in Perinatally HIV- Infected Adolescents: Research-Based Implications for Intervention Claude Ann Mellins,

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.

Page 30: HIV Prevention and Mental Health Risk Factors in Perinatally HIV- Infected Adolescents: Research-Based Implications for Intervention Claude Ann Mellins,

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

Page 31: HIV Prevention and Mental Health Risk Factors in Perinatally HIV- Infected Adolescents: Research-Based Implications for Intervention Claude Ann Mellins,

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?

Page 32: HIV Prevention and Mental Health Risk Factors in Perinatally HIV- Infected Adolescents: Research-Based Implications for Intervention Claude Ann Mellins,

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).

Page 33: HIV Prevention and Mental Health Risk Factors in Perinatally HIV- Infected Adolescents: Research-Based Implications for Intervention Claude Ann Mellins,

CHAMP+: Supporting HIV-infected youth and families

National Institute of Mental Health (1 R34 MH072382 01A1-02)

Principal Investigators: Mary McKay, Ph.D., Claude Mellins, Ph.D., Elaine Abrams, M.D.

Page 34: HIV Prevention and Mental Health Risk Factors in Perinatally HIV- Infected Adolescents: Research-Based Implications for Intervention Claude Ann Mellins,

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).

Page 35: HIV Prevention and Mental Health Risk Factors in Perinatally HIV- Infected Adolescents: Research-Based Implications for Intervention Claude Ann Mellins,

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

Page 36: HIV Prevention and Mental Health Risk Factors in Perinatally HIV- Infected Adolescents: Research-Based Implications for Intervention Claude Ann Mellins,

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.

Page 37: HIV Prevention and Mental Health Risk Factors in Perinatally HIV- Infected Adolescents: Research-Based Implications for Intervention Claude Ann Mellins,

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)

Page 38: HIV Prevention and Mental Health Risk Factors in Perinatally HIV- Infected Adolescents: Research-Based Implications for Intervention Claude Ann Mellins,

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.

Page 39: HIV Prevention and Mental Health Risk Factors in Perinatally HIV- Infected Adolescents: Research-Based Implications for Intervention Claude Ann Mellins,

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

Page 40: HIV Prevention and Mental Health Risk Factors in Perinatally HIV- Infected Adolescents: Research-Based Implications for Intervention Claude Ann Mellins,

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+.

Page 41: HIV Prevention and Mental Health Risk Factors in Perinatally HIV- Infected Adolescents: Research-Based Implications for Intervention Claude Ann Mellins,

The Development of CHAMP+: Phase 1

With a pilot grant from the HIV Center for Clinical and Behavioral Studies in 2002 5 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.

Page 42: HIV Prevention and Mental Health Risk Factors in Perinatally HIV- Infected Adolescents: Research-Based Implications for Intervention Claude Ann Mellins,

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.

Page 43: HIV Prevention and Mental Health Risk Factors in Perinatally HIV- Infected Adolescents: Research-Based Implications for Intervention Claude Ann Mellins,

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.

Page 44: HIV Prevention and Mental Health Risk Factors in Perinatally HIV- Infected Adolescents: Research-Based Implications for Intervention Claude Ann Mellins,

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.

Page 45: HIV Prevention and Mental Health Risk Factors in Perinatally HIV- Infected Adolescents: Research-Based Implications for Intervention Claude Ann Mellins,

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.

Page 46: HIV Prevention and Mental Health Risk Factors in Perinatally HIV- Infected Adolescents: Research-Based Implications for Intervention Claude Ann Mellins,

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.

Page 47: HIV Prevention and Mental Health Risk Factors in Perinatally HIV- Infected Adolescents: Research-Based Implications for Intervention Claude Ann Mellins,

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

Page 48: HIV Prevention and Mental Health Risk Factors in Perinatally HIV- Infected Adolescents: Research-Based Implications for Intervention Claude Ann Mellins,

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

Page 49: HIV Prevention and Mental Health Risk Factors in Perinatally HIV- Infected Adolescents: Research-Based Implications for Intervention Claude Ann Mellins,

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: • Completed consumer and staff consultation meetings• Completed the first intervention group & assessments• Conducted individual qualitative interviews with Spanish-

speaking consumers

Clinic 3: • In the process of planning for implementation of consultation

meetings

Page 50: HIV Prevention and Mental Health Risk Factors in Perinatally HIV- Infected Adolescents: Research-Based Implications for Intervention Claude Ann Mellins,

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

Page 51: HIV Prevention and Mental Health Risk Factors in Perinatally HIV- Infected Adolescents: Research-Based Implications for Intervention Claude Ann Mellins,

Adapting CHAMP+ for South Africa: Supporting HIV-Infected

Youth and Families (R21 NR010474-01; PI C. Mellins, PhD)

Page 52: HIV Prevention and Mental Health Risk Factors in Perinatally HIV- Infected Adolescents: Research-Based Implications for Intervention Claude Ann Mellins,

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

Page 53: HIV Prevention and Mental Health Risk Factors in Perinatally HIV- Infected Adolescents: Research-Based Implications for Intervention Claude Ann Mellins,

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

Page 54: HIV Prevention and Mental Health Risk Factors in Perinatally HIV- Infected Adolescents: Research-Based Implications for Intervention Claude Ann Mellins,

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

Page 55: HIV Prevention and Mental Health Risk Factors in Perinatally HIV- Infected Adolescents: Research-Based Implications for Intervention Claude Ann Mellins,

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

Page 56: HIV Prevention and Mental Health Risk Factors in Perinatally HIV- Infected Adolescents: Research-Based Implications for Intervention Claude Ann Mellins,

THE CHARACTERS

Page 57: HIV Prevention and Mental Health Risk Factors in Perinatally HIV- Infected Adolescents: Research-Based Implications for Intervention Claude Ann Mellins,

Facilitating discussion of sensitive topics

Page 58: HIV Prevention and Mental Health Risk Factors in Perinatally HIV- Infected Adolescents: Research-Based Implications for Intervention Claude Ann Mellins,

Facilitating discussion of sensitive topics

Page 59: HIV Prevention and Mental Health Risk Factors in Perinatally HIV- Infected Adolescents: Research-Based Implications for Intervention Claude Ann Mellins,

Facilitating discussion of sensitive topics

Page 60: HIV Prevention and Mental Health Risk Factors in Perinatally HIV- Infected Adolescents: Research-Based Implications for Intervention Claude Ann Mellins,

CHAMP+SA Grant submission This proposal responds to RFA-NR-07-002, 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

Page 61: HIV Prevention and Mental Health Risk Factors in Perinatally HIV- Infected Adolescents: Research-Based Implications for Intervention Claude Ann Mellins,

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.

Page 62: HIV Prevention and Mental Health Risk Factors in Perinatally HIV- Infected Adolescents: Research-Based Implications for Intervention Claude Ann Mellins,

Specific Aims (cont) 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

Page 63: HIV Prevention and Mental Health Risk Factors in Perinatally HIV- Infected Adolescents: Research-Based Implications for Intervention Claude Ann Mellins,

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)

Page 64: HIV Prevention and Mental Health Risk Factors in Perinatally HIV- Infected Adolescents: Research-Based Implications for Intervention Claude Ann Mellins,

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

Page 65: HIV Prevention and Mental Health Risk Factors in Perinatally HIV- Infected Adolescents: Research-Based Implications for Intervention Claude Ann Mellins,

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

Page 66: HIV Prevention and Mental Health Risk Factors in Perinatally HIV- Infected Adolescents: Research-Based Implications for Intervention Claude Ann Mellins,

Specific Aims (cont)

How feedback from consultants is used to inform CHAMP+SA

Choices made regarding intervention: • Content

• Structure

• Intervention delivery

Page 67: HIV Prevention and Mental Health Risk Factors in Perinatally HIV- Infected Adolescents: Research-Based Implications for Intervention Claude Ann Mellins,

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.

Page 68: HIV Prevention and Mental Health Risk Factors in Perinatally HIV- Infected Adolescents: Research-Based Implications for Intervention Claude Ann Mellins,

Phase 1: Process

Document emerging issues (qualitative data collection) & program development processes

Reach internal consensus on intervention content & process

Re-write intervention curriculum

Page 69: HIV Prevention and Mental Health Risk Factors in Perinatally HIV- Infected Adolescents: Research-Based Implications for Intervention Claude Ann Mellins,

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

Page 70: HIV Prevention and Mental Health Risk Factors in Perinatally HIV- Infected Adolescents: Research-Based Implications for Intervention Claude Ann Mellins,

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

Page 71: HIV Prevention and Mental Health Risk Factors in Perinatally HIV- Infected Adolescents: Research-Based Implications for Intervention Claude Ann Mellins,

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

Monthly meetings via “Skype” will take place with all staff at McCord Hospital, NYSPI, MSSM, and HSRC

Page 72: HIV Prevention and Mental Health Risk Factors in Perinatally HIV- Infected Adolescents: Research-Based Implications for Intervention Claude Ann Mellins,

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).

Page 73: HIV Prevention and Mental Health Risk Factors in Perinatally HIV- Infected Adolescents: Research-Based Implications for Intervention Claude Ann Mellins,

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

Page 74: HIV Prevention and Mental Health Risk Factors in Perinatally HIV- Infected Adolescents: Research-Based Implications for Intervention Claude Ann Mellins,

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


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