Reproductive Health Decision-Making in Perinatally
HIV-Infected Adolescents and Young Adults
Cynthia Fair•Lori Wiener•Sima Zadeh•Jamie Albright•Claude Ann Mellins•
Michael Mancilla•Vicki Tepper•Connie Trexler•Julia Purdy•
Janet Osherow•Susan Lovelace•Suad Kapetanovic
? Springer Science+Business Media, LLC 2012
children are surviving into adolescence and adulthood,
becoming sexually active and making decisions about their
reproductive health. The literature focusing on the reproduc-
tive decisions of individuals behaviorally infected with HIV
can serve as a springboard for understanding the decision-
making process of PHIV? youth. Yet, there are many
With widespread access to antiretroviral therapy
differences that critically distinguish reproductive health and
public health implications of their reproductive decisions,
better understanding of factors influencing the decision-
making process is needed to help inform the development of
salient treatment and prevention interventions. To begin
addressing this understudied area, a ‘‘think tank’’ session,
comprised of clinicians, medical providers, and researchers
with expertise in the area of adolescent HIV, was held in
Bethesda, MD, on September 21, 2011. The focus was to
explore what is known about factors that influence the
reproductive decision-making of PHIV? adolescents and
Lori Wiener and Suad Kapetanovic contributed to this article in their
personal capacity. The views expressed are their own and do not
necessarily represent the views of the National Institutes of Health or
United States Government.
C. Fair (&)
Elon University, CB 2338, Elon, NC 27244, USA
National Cancer Institute, Center for Cancer Research,
9000 Rockville Pike, Building 10, Pediatric Clinic I-SE,
Room 1-6466, Bethesda, MD 20892, USA
Pediatric Oncology Branch, National Cancer Institute,
10 Center Drive, Building 10, Room 1-5460,
Bethesda, MD 20892, USA
Elon University, CB 3362, Elon, NC 27244, USA
C. A. Mellins
Departments of Psychiatry and Sociomedical Sciences,
HIV Center for Clinical and Behavioral Studies,
Columbia University and the New York
State Psychiatric Institute, New York,
NY 10032, USA
Burgess/SIS Clinics, Children’s National Medical Center,
111 Michigan Ave NW # 3600, Washington, DC 20010, USA
Pediatric Immunology and Rheumatology, Pediatric AIDS
Program, University of Maryland School of Medicine,
737 W. Lombard Street, Room 244, Baltimore, MD 21201, USA
Adolescent Clinical Research, Burgess Clinic,
Children’s National Medical Center, 111 Michigan Ave., NW,
Washington, DC 20010, USA
National Institutes of Health, Clinical Center/CCMD,
Bldng. 10, Room 2C145, MSC 1662, Bethesda, MD 20892, USA
Pediatric Infectious Disease Department, Georgetown University
Hospital, 3800 Reservoir Rd. NW, 2nd Floor, PHC, Washington,
DC 20007, USA
Matern Child Health J
young adults, determine what important data are needed in
order to develop appropriate intervention for PHIV? youth
having children, and to recommend future directions for the
field in terms of designing and carrying out collaborative
studies. In this report, we summarize the findings from this
meeting. The paper is organized around the key themes that
emerged, including utilizing a developmental perspective to
create an operational definition of reproductive decision-
making, integration of psychosocial services with medical
management,and how todesignfuture researchstudies.Case
examples are presented and model program components
HIV-infected youth ? Adolescent reproductive health
HIV and reproductive health ? Perinatal HIV ?
Highly active antiretroviral therapy
Reproductive decision making
Since the first reported case of perinatal HIV infection in the
United States (US) in 1983  the cohort of perinatally
HIV-infected (PHIV?) children in the US rose steadily until
1992 when perinatal antiretroviral therapy (ART)-based
protocols were developed resulting in a dramatic drop in the
rates of mother-to-child transmission (MTCT) . In 2008,
an estimated 9,129 PHIV? youth were living in the US .
As this unique cohort is aging into young adulthood,
becoming sexually active, building intimate relationships
and entering the workforce, many are beginning to make
decisions about their reproductive health. Given the
potential public health implications of their reproductive
decisions, better understanding of factors influencing their
decision-making can inform the development of salient
treatment and prevention interventions. To date, very few
studies have examined reproductive decision-making
(RDM) among PHIV? youth (e.g., [4, 5]).
Between 6,000 and 7,000 HIV-infected (HIV?) women
give birth annually in the US . This number is likely
going to rise as 20 % of HIV? people in the US are women
of reproductive age, , most men and women with HIV
desire to have children , and the longevity and quality of
life of HIV? people in the era of highly active antiretro-
viral therapy (HAART) is improving. Studies evaluating
factors influencing RDM in adults suggest that HIV status
alone is not a key factor . Younger age, better health,
and perceived partner desire for parenthood are the most
predominant factors that positively influence desire and
intention to have children. Conversely, concern about
infecting partners and future children, misunderstanding of
MTCT risk, societal disapproval of reproductive behavior
post HIV diagnosis, and concerns pertaining to leaving a
child an orphan are factors that mitigate against desire and
intention to have children among HIV? adults [10–29].
The existing body of literature focusing on the RDM of
women and men who are behaviorally infected with HIV
can serve as a springboard for understanding the decision-
making process of PHIV? youth. Yet, there are many
differences that critically distinguish reproductive health
and related decision-making of PHIV? youth from that of
behaviorally HIV-infected adults and research and clinical
efforts aimed at understanding the decision-making process
of PHIV? youth should include significant focus on these
and other unique circumstances of PHIV? youth (Table 1).
Although there are significant differences between the two
groups, they are both comprised of young adults who are
dealing with complicated reproductive considerations per-
taining to short and long term decision-making.
This paper reports the findings and recommendations
generated from a think tank meeting addressing the critical
and understudied area of RDM in PHIV? youth that was
held in Bethesda, MD, on September 21, 2011.
clinicians, medical providers and researchers with expertise
in the area of adolescent HIV to attend a ‘‘think tank’’
meeting. (The meeting format was based upon a previously
successful think tank .) The aim was to explore what is
known about factors that influence the RDM of PHIV?
are needed in order to develop appropriate intervention for
PHIV? youth having children, and to recommend the
direction the field should go in terms of designing and car-
Pediatric Immunology, University of Maryland,
737 W. Lombard Street, Rm 240, Baltimore, MD 21201, USA
Division of Intramural Research Programs, National Institute
of Mental Health, National Institutes of Health, 10-CRC,
Room 6-5340, 10 Center Drive, MSC 1276,
Bethesda, MD 20892-1276, USA
Matern Child Health J
prepare a brief presentation based upon their clinical work
and/or research and to conclude with recommendations of
future research questions. The meeting was audio-recorded
and detailed notes were taken as well. Following the con-
sent to each participant for review and revision. The panel
came to full agreement on the final version of notes, ques-
into sub-sections reflecting main themes that emerged
throughout the meeting. These include: An Operational
Definition of Reproductive Decision-Making, Developmen-
tal View, Key Psychosocial Factors, Medical Management
and Research Methodology. Case studies presented during
the Think Tank are included to underscore the intricacy of
and variability within the population of PHIV? youth
regarding reproductive decisions.
Operational Definition of Reproductive
Reproductive-Decision Making (RDM) is a broad term.
Such decision-making may be active or passive, and is
characterized by varying levels of desire and intent to bear
children. Previous literature includes the following aspects
as part of the RDM process [31–33]:
Continuation of sexual activity
Time in sexual union
Use of contraception
Use in individual sexual encounters
Carry to term vs. abortion
Much of the language surrounding RDM for people
living with HIV focuses on condom use, birth control and
abortion, possibly due to emphasis of education on absti-
nence and pregnancy prevention rather than risk reduction
and family planning [34, 35]. For the purposes of
describing RDM in the PHIV? population, Think Tank
participants identified a need for researchers to distinguish
between outcomes of sexual risk behaviors and other
aspects of reproduction for the purposes of describing
Table 1 Key distinguishing features between perinatally and behaviorally HIV-infected pregnant women
Mode of transmission PerinatalBehavioral
Time of infection/
Birth/infancy or (rarely) childhood Adolescence/adulthood; infection often acquired from the
father of the baby and/or during the same sex act as the
ART experienceExtensive, often life-longOften ART-naı ¨ve (either because they were recently
diagnosed, or because not clinically indicated until
ART resistance riskHigh (due to long history of treatment and frequent past
history of non-adherence)
Low risk of resistance, but adherence may be affected by
psychosocial and structural factors (stigma,
Rare (Anecdotal evidence suggests adherence may decline
following birth of the baby)
Common (either per prescriber’s directions or by the
mother’s choice) 
Unknown. However, clinically good based on infant
Generally good or improved  but may be affected by
psychosocial and structural factors (e.g., stigma,
secrecy, access to care)
HIV first diagnosed
Extremely rare/no documented casesVery common 
Social stigma Often perceived as ‘‘innocent victims’’ as children, but this
changes as they enter into adolescence
Infection due to ‘‘morally suspect’’ behavior 
Salient stressorsPregnancy may trigger unresolved psychological conflicts
related to the experience of being born with HIV
Support system relatively stable, may be less need for
secrecy though limited disclosure within a household not
uncommon. Concerns about partner disclosure are likely
comparable to those among behaviorally infected women
Often still accepting the recent diagnosis of HIV,
initiating ART for the first time, learning about HIV,
guilt and concern about transmitting HIV to fetus/baby
Cultural stigma leading to secrecy, erosion of support
Concerns about confidentiality, safety, decisions about
diagnostic disclosure to the partner
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RDM in the PHIV? population who contend with repro-
ductive decisions within unique developmental, psycho-
social, and medical contexts. The next sections provide
greater detail regarding how these contexts may influence
the RDM of PHIV? youth.
The primary focus of research in the field has been on
medical management of pregnant PHIV? youth or
obstetrical outcomes, particularly on preventing MTCT,
rather than on in-depth evaluation of the underlying
behavioral/social processes that brought the PHIV? youth
to parenthood. However, two parallel developments will
lead to increased global relevance of reproductive health
and related decision-making among PHIV? youth: (1)
improved access to HAART has increased longevity of
PHIV? youth in the developing world leading to increased
need for comprehensive approaches to their well-being as
improved accessibility of effective perinatal ART-based
protocols will likely lead to more pregnancies among
PHIV? women due to reduced fears of MTCT.
Interventions designed to reduce the risk of sexually
transmitting HIV by this population should include devel-
opmentally appropriate psychological and social approa-
ches that target perceptions of peer influence and emotional
well-being . Accordingly, the participants highlighted
the need for future research objectives and resulting clini-
cal interventions to adopt the developmental view of the
RDM among PHIV? youth, as illustrated in Fig. 1 and
Brain Development and Mental Health Outcomes
Poor neurodevelopmental and behavioral outcomes could
critically affect decision-making process of PHIV? youth,
including their RDM. Data from US-based multi-site
observational cohort studies have consistently reported
high rates of neurocognitive scores well below population
norms [39–42] and higher than expected rates of mental
health problems [43–46] in PHIV? youth. There are
multiple bio-psycho-social risks, starting with in utero
exposure of developing brain to maternal HIV, ART,
drugs, alcohol, immune dysregulation [47–52], followed by
life-long immune dysregulation, vascular dysfunction,
central nervous system viremia [42, 53–58] and exposure
to ART [59, 60]. Significant psychosocial and/or familial
risks include relatively high prevalence of substance abuse
and psychiatric disorders among the biological parents [50,
51, 61, 62] neighborhood disadvantage and other envi-
ronmental factors: approximately 85 % of PHIV? youth
are living in urban environments, are of ethnic minority
status, and have likely experienced disruptions of place-
ments leading to multiple separations from parents and
In addition to neurodevelopmental and mental health
outcomes, it is important to consider the role of adolescent
brain development within the context of RDM. For
example, Casey et al.  noted that the cortical regions of
the brain associated with problem solving continue to
develop through adolescence. Older adolescents may be
better able to assess risk and understand the consequences
of their actions than younger youth .
the PHIV? youth’s diagnosis to him or herself, and disclo-
sure to potential sexual partners. The general consensus
within the literature is that PHIV? children should be
informed of their diagnosis in a developmentally sensitive
manner  by adolescence . Behavioral complications
are more likely if disclosure was not conducted in a timely
and developmentally appropriate manner [6–70]. Some
guardians prefer to delay disclosure until the child is older,
waiting until a specific milestone occurs such as the onset of
puberty or when their child starts dating . However,
parents may be unaware of their child’s sexual behavior.
Awareness of one’s HIV status is critical to partner
disclosure. Limited evidence in this area suggests that the
majority of youth with HIV may not be informing their
sexual partners of their HIV status [35, 72, 73]. Vijayan
et al.  noted that out of their sample of 18 PHIV?
adolescents, four reported having sexual intercourse and
none shared their HIV status with their partner. A recent
multi-site study found that 40 % of sexually active ado-
lescents with HIV reported a sexual relationship with a
partner to whom they did not disclose their HIV status .
Making decisions about sexual behavior can be a challenge
for anyone, but particularly for youth who have a stigma-
tized, potentially fatal, sexually transmissible disease .
Case study #1 draws attention to the challenges of partner
disclosure, particularly the usefulness of careful prepara-
tion in modulating anxiety.
Case Study #1. Steven is a 24-year-old African Amer-
ican male with perinatally acquired HIV. He was
adherent to his medication regimen. His HIV PCR
was\50 copies/mL and CD4 count in the 700’s. Steven
and his girlfriend were consistently using condoms
during sexual intercourse, but she was unaware of his
HIV status. At his clinic visit he discussed wanting to
disclose his status to his girlfriend but indicated that he
was feeling very anxious and uncertain. After discussing
strategies for disclosure with the clinic staff, he initially
Matern Child Health J
decided to disclose with clinic staff and his mother
present. Despite his plan to include others, Steven told
her his status independently. Clinic staff and his mother
met with them afterwards to clarify information and
answer questions. Steven’s girlfriend accompanied him
to his next scheduled appointment at which she was
tested and found to be HIV negative. They are still
together 6 months after the disclosure.
Health behaviors, particularly sexual behaviors, substance
use and treatment adherence are relevant to RDM. They
may have a causal relationship with reproductive behavior
and related outcomes. For example, the negative influence
of alcohol and substance use on sexual behavior has been
well established among adolescents (e.g. ), and poor
medication adherence increases the risk of transmission to
sexual partners and MTCT due to poor maternal viremia
control . Health behaviors may also serve as clinical
windows into PHIV? youth’s general judgment, decision
making, priorities and planning capacity and, as such, help
identify a youth who might need more assistance and
education with regards to RDM regardless of mode of
acquisition. In fact, an earlier study found no differences
between those who acquired their disease perinatally or via
transfusion pertaining to sexual behavior .
Substance use patterns among PHIV? youth are not
well understood. Studies using youth interviews found
15–20 % of reported substance abuse among PHIV? youth
[43, 79] while the rates based upon chart review were
approximately 9 % , both relatively low compared to
the findings from the anonymous survey of US urban high-
school students .
Some studies evaluating sexual behavior of PHIV?
adolescents indicate that their sexual debut is slightly later,
possibly as a result of delayed puberty secondary to the
Fig. 1 Panel-proposed developmental objectives and goals. The
developmental view, illustrated in this picture, places reproductive
health decision-making of PHIV? youth on the continuum which
includes other age- and development-dependent bio-psycho-social
milestones. In this view, although reproductive health naturally comes
into focus during adolescence and (young) adulthood, the stage for it
is being set from birth. The panel strongly endorsed this view as the
framework for formulating research objectives and potential future
clinical approaches designed to optimize reproductive decision-
making and reproductive health outcomes among PHIV? individuals.
PHIV? perinatally HIV-infected, RDM reproductive decision-making
Matern Child Health J
effects of HIV [81, 82]. However, by age 17, reported rates
of sexual intercourse are similar to the general US high
school population (70 and 62 % respectively) . Despite
relatively low knowledge of transmission risk factors,
condom use was found to be more frequent among PHIV?
youth, and youth with better understanding of transmission
risk reported higher condom use self-efficacy .
Medication adherence among PHIV? youth, like youth
with other chronic illnesses , typically declines during
adolescence with adherence rates ranging from 27 to 41 %
. Complex medication regimens, unstable family sys-
tems, stigma, alcohol and substance use, adverse effects,
and depression are commonly cited challenges to adherence
[86–88]. The reported rates of all three behaviors are likely
underestimates . Case study #2 highlights the critical
importance of adherence during pregnancy and complex
interconnections between adherence and disclosure.
Case Study #2. Tamara is a 19 year old PHIV? African
American with a history of poor medication adherence,
live with her biological mother and are facing eviction.
Tamara has expressed heightened anxiety around disclo-
sure that was exacerbated by her mother’s advice not to
disclose Tamara’s status to her boyfriend. Tamara’s
immediate family is also unaware of her and her mother’s
HIV status. During pregnancy her concerns worsened as
she frequently stayed with her boyfriend and did not want
to take her medication for fear of accidental disclosure.
Tamara did not disclose her HIV status to her boyfriend
until several months after the birth of their son, when
follow-up tests confirmed that their child was HIV-
infected. Her boyfriend remains HIV-negative. Current
services include emotional support and counseling sur-
rounding medication adherence for both her and her son’s
new diagnosis, housing, and post- disclosure support.
Ongoing education is provided regarding safer sex
practices and modes of contraception.
Transition to Adult Care
The transition of PHIV? youths’ medical care from pedi-
atric to adult providers is fraught with challenges. Wiener
et al.  found that 45 % of their sample of 59 adoles-
cents with HIV reported the transition to adult care was
more difficult than anticipated. Primary concerns related to
continuity and quality of care, navigating complex medical
and social service agencies, and communication with pro-
viders. Vijayan et al.  reported the negative influence of
HIV-related stigma on families’ desire to meet new pro-
increasing autonomy could be deficient since pediatric
providers may have refrained from promoting medical
independence due to the shortened lifespan of PHIV?
youth. The typically strong relationship between pediatric
providers and youth is an additional challenge to transition.
Evidence suggests PHIV? youth and their families are
reluctant to leave the comfort and familiarity of their long-
standing relationships with pediatric staff [83, 89, 90].
Finally, in a recent study of adolescent providers, several
clinicians noted that young women with HIV who had been
pregnant appeared to have an easier transition to adult
infectious disease care. The authors suggested that the
experience of receiving prenatal care in a different clinic,
as well as additional social services offered to the pregnant
woman, facilitated the movement from pediatric to adult
care . Such anecdotal observations must be further
evaluated with longitudinal studies.
Reproductive Health Decision-Making
By the time PHIV? youths, their guardians and/or medical
providers start addressing reproductive health issues, they
clinical challenges, handling them with varying degrees of
success and resulting in variable clinical outcomes. Signifi-
cant new knowledge about their RDM could be gained by
exploring research questions that take into account salient
neurodevelopmental and behavioral vulnerabilities and the
interaction between the characteristics of diagnostic disclo-
sure, disclosure to sexual partners and overall health
behaviors. Figure 1 provides graphic representation of pro-
posed research objectives and possible clinical benefits of
milestones as well as neurodevelopmental and behavioral
vulnerabilities of PHIV? youth and associated risks.
There was consensus amongst the participants that
obtaining a psychosocial profile of PHIV? adolescents
who have made a variety of reproductive decisions will be
useful in shaping medical care as well as education and
interventions. Considering the concomitant environmental
factors often experienced by PHIV? youth, disease influ-
ences may play less prominent role in their RDM than
gender, relationship issues, and family factors.
Research in RDM of HIV? adults has mostly focused on
HIV? women (and their partners), and much less on HIV?
men . Gender distribution among PHIV? youth is more
reflective of the general population, while 63 % of the
HIV? adults are men who became infected through sex
with men . Young men’s perspectives on fatherhood
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should be explored, as well as their knowledge of risk
reduction strategies for childbearing.
Sexuality and Relationships
and must contend with the perception that HIV is an exclu-
sively sexually transmitted disease. While disclosure issues
for PHIV? individuals have been extensively researched
with respect to disclosure of the diagnosis to the child,
requirements to disclose to others may also play a role in
young adults’ choices of initiationof relationshipsas well as
their reproductive decisions. The participants raised an
important question that has yet to be answered: How is it
different to experience first sexual encounters as a person
living with HIV rather than being sexually experienced
before contracting HIV? The potential influence of growing
must be considered in research agendas as well as in models
for sexual and reproductive health education and support.
Many PHIV? youth were born to young mothers and
fathers and grew up in single-headed family households
. Young maternal age at pregnancy is a predictor for
early parenthood among youth, and may similarly predict
early parenthood among PHIV? adolescents. Think Tank
participants noted that in their clinical work, PHIV? youth
sometimes question whether their own mother would have
chosen to give birth to them if they had known they were
HIV? at the time of pregnancy. Moreover, those who have
lost a parent and/or a sibling to the disease may be influ-
enced by this experience in their own RDM as they wish to
create their own family. These issues add considerable
complexity to PHIV? youth as they reach reproductive
age. Below are some examples of possible research ques-
tions focused on psychosocial factors.
Which psychosocial characteristics influence RDM?
Does gender affect RDM?
How do PHIV? young men perceive fatherhood?
Does a perception of intimacy impact RDM?
What role does self-efficacy play in sex/intimacy,
Does early/perceived maternal loss/rejection play a role
Are intergenerational factors influential in RDM? (e.g.
Do young PHIV? women seek pregnancy, or is
pregnancy perceived as outside of one’s control?
Do HIV? people prefer to have relationships with
others with HIV?
What role does sexual altruism/ethics play in sex and
What influence, if any, does a history of sexual violence
or abuse have on intimacy, sexuality and RDM?
What is the role of disclosure in RDM?
What is the role of perceived rejection (either from
parents, family or others) in RDM?
Clinical challenges, adherence and the provider-patient
relationship were assessed by the participants as three
critical areas that deserve consideration in future planning.
Programs that address the medical and psychosocial chal-
lenges in a developmentally sensitive manner are critically
needed. Case study #3 highlights many of the challenges
experienced by PHIV? youth living with advanced illness.
Case Study #3. On a quarterly clinic visit, Claudia, a
20 year old PHIV? Caucasian woman with a history of
inconsistent adherence and poorly controlled HIV,
presented with abdominal pain, 10 kg weight loss, oral
candidiasis and severe cellulitis. CD4 count was 45 and
viral load 67,000. Pregnancy was confirmed by serum
beta-HCG. Claudia ‘‘didn’t know’’ she was pregnant,
reported that she was afraid to tell her mother since her
mother hates her boyfriend (he was not allowed in their
home) but that she very much wanted to ‘‘have his
baby’’. Social worker and Claudia called Claudia’s
mother, Claudia was referred to a high risk Obstetric
team. She was encouraged to quit smoking and her ART
therapy was changed. Claudia remained adherent during
pregnancy and her baby was born at 29 weeks, HIV-
negative. Family counseling was initiated, new housing
was obtained, parenting classes offered and services
initiated to address the baby’s developmental needs.
Matthews and Mukherjee identify three major clinical
challenges in the reproductive health of HIV? individuals:
(1) maintaining maternal health, (2) preventing MTCT, and
(3) preventing transmission within a sero-discordant couple
. Pregnancy-related sleep deprivation, pain and pro-
inflammatory milieu make HIV? pregnant women highly
vulnerable to perinatal depression (PND) [95–97] which,
when occurs, poses significant challenges to achieving
objectives of medical care. Indeed, the incidence of PND
among HIV? women over a 10 year period in one study
was 31 % (N = 273), despite access to ART and 100 %
prevention of MTCT; the correlates of PND were substance
use during pregnancy, adherence problems, past psychiatric
Matern Child Health J
diagnosis, social stress during pregnancy and CD4? nadir
The literature has not identified any programs that sys-
tematically identify pregnant HIV? women (regardless of
the mode of transmission) at risk for PND and/or other
mental health-related complications of pregnancy. While
the risk of PND among PHIV? women is unknown, given
the reported correlates of PND among behaviorally infec-
ted HIV? women, research that would establish the risk
and its correlates, followed by prevention and treatment
interventions is vital.
pregnant youth is the possibility that unprotected sex with
another HIV? person may lead to a superinfection with
another, possibly treatment-resistant, HIV strain [98, 99].
Positive effects on adherence have been observed for
HIV? women who become pregnant, though they are most
apparent for ART-naive patients . For PHIV? youth,
medication adherence can be both positively and nega-
tively influenced by disclosure [101, 102], and has impli-
cations for reproduction in that transmission risk decreases
among those with favorable viral profiles. Extended ART
experience, often coupled with a history of suboptimal
adherence, puts PHIV? youth at higher risk for developing
resistance to medications, including perinatal ART regi-
mens prescribed to help prevent MTCT.
accustomed to working with PHIV ? children who had a
shortenedlifespanmay holda residualattitudein considering
their reproductive and sexual development. This residual
attitude may affect contemporary clinical care, limiting dis-
cussions of reproductive health to information related to
and decision-making. Medical providers are faced with the
dual challenge of addressing developmentally appropriate
sexual health needs as well as preparing adolescent patients
for transition to adult care . No studies to date have
examined how much attention reproductive counseling is
given to PHIV? youth during medical care visits.
Below are possible research questions related to the
medical management of PHIV? youth.
What role does delayed sexual maturation play in
What medical histories, disease profiles, or biomedical
characteristics, (if any), are associated with particular
reproductive choices and/or outcomes?
Does pregnancy play a role in adherence? Conversely,
what is the relationship between varying levels of
adherence and reproductive decisions?
Does the presence of a learning disorder, low IQ, or
psychiatric disorder affect RDM?
What information do PHIV? youth receive from
providers about RDM, in what format, and by which
types of providers?
How much education focuses on preventing transmis-
sion versus becoming a parent?
What are the best models for introducing PHIV? youth
to RDM-related matters?
Are messages from providers about RDM different for
youth with PHIV? versus BHIV?
What interventions have patients who experience or
attempt intentional pregnancies received?
Participants agreed that key components of a model pro-
gram would consist of reproductive-aged girls consistently
being provided access and information about reproductive
health and choices by participants of the multi-disciplinary
clinical team. After confirmed pregnancy and the young
woman’s decision to continue their pregnancy, the young
women transitions to an integrated high risk obstetric
program where HIV and prenatal care are provided
throughout her pregnancy. The obstetric clinic includes a
case manager who addresses barriers to care such as
transportation, insurance, housing, reminders for appoint-
ments and perinatal ART adherence support. Following the
birth of the baby, continuity with the medical team is
maintained and follow up of exposed infants is continued at
the same program. Services are tailored clients’ needs and
are responsive to consumer feedback and emerging needs
in the local epidemic.
After addressing gaps in existing literature and outlining spe-
cific areas for future research related to the reproductive deci-
identifying methodological challenges related to studying
PHIV? youth and ways to address the identified challenges.
Prior research with HIV? adults illustrates the need for a
of the decision-making and reproductive health needs of the
Matern Child Health J
bio-psycho-social profile of PHIV? reproductive-age ado-
participants noted selection bias and overlapping partici-
pants in the existing cohorts. In order to understand influ-
ences on RDM, large sample cross-sectional data as well as
smaller, qualitative studies are needed. Moreover, as the
population of adolescents growing up with HIV typically
come from high risk backgrounds , it is important to
include an appropriate control group when seeking to
measure significant influences on RDM.
Selection bias may occur as a result of patients’ varying
levels of engagement in medical care services. It is nec-
essary to find ways to reach out to adolescents not already
engaged in care or enrolled in research in order to acquire
data that will be representative of this under-served and
under-studied population. Possible ways to improve
enrollment rates include utilizing texting and other mobile
health technologies as a mode of communication, e-mail-
ing participants, providing phone cards if phone access is
inconsistent and recruiting PHIV? peers as researchers or
interviewers. Other social media methods should be con-
sidered while recognizing that additional protections for
privacy are needed .
Think tank participants identified self-efficacy as an
important construct to consider. While difficult to measure,
applying the concept of self-efficacy to a specific skill or
behavior, such as condom use or obtaining medical support
for reproductive health issues, may be most useful. Addi-
tionally, loss, particularly early maternal loss, may influ-
ence reproductive decision-making. For this population,
many of whom have experienced many losses in their lives,
a consistent measurement of (perceived) loss and its impact
needs to be determined.
Many other factors, such as unplanned versus planned preg-
nancy, family and social influences, physician-patient rela-
may potentially influence understanding and reporting of
only to measure these influences, but also to identify to what
extent these and other contextual factors affect data validity
and develop appropriate validation methodology.
The findings of this think-tank suggest that youth growing
up with HIV in the US typically come from high-risk
backgrounds with associated mental health problems but
also that they share many commonalities with their typi-
cally developing peers. They are future-oriented and many
have a strong desire for having children. The findings of
this think-tank must be considered within the context of
several limitations. First, due to funding constraints, we
were limited to those clinicians and researchers from the
east coast located in close proximity to the National
Institutes of Health. Additionally, our focus was exclu-
sively on the RDM among PHIV? youth within the US
context and thus the findings are applicable mainly to high-
resource countries. A number of experts have international
experience, but our primary focus was on domestic issues
related to RDM, which has not yet come to the forefront in
low-resource countries. Finally, lack of representative data
in some areas made drawing conclusions difficult yet
highlighted the need for consensus-based expert opinions
to guide the field.
Thus, while it was not possible to address all the ques-
tions and suggestions for future research, this is the first
report on the complexity of issues facing maturing PHIV?
youth. It is our hope that researchers, clinicians, and sys-
tems of care will keep pace with the needs of this special
population as their life spans continue to lengthen. Future
research addressing objectives outlined in the report will
likely have implications for policy and service delivery
particularly in the developed world.
Intramural Research Program of the NIH, National Cancer Institute,
Center for Cancer Research and the National Institutes of Mental
Health. The authors would also like to thank the Elon University
Faculty Research and Development Committee for funding the Think
Tank and the Children’s Inn for their generous hospitality.
This work was supported [in part] by the
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