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DIAGNOSTIC 
DISCLOSURE

SOCIAL WORK PRACTICE WITH CHILDREN PERINATALLY-
INFECTED WITH HIV: CONSIDERATIONS REGARDING DIAGNOSTIC 
DISCLOSURE

       The development of antiretroviral therapies (ARTs) has signifi cantly 
lengthened the lifespan and changed the life course of most individuals 
infected with HIV and AIDS in the United States. Furthermore, ART use during 
pregnancy has signifi cantly reduced the rate of mother-to-child (perinatal) HIV 
transmission. While perinatal infection rates among children in the 
United States have declined since the 1990s, ART regimens became standard 
treatment protocol, there remains a population of children entering adolescence 
who were born HIV-positive. This paper discusses: 1) the importance of diagnostic 
disclosure of HIV and AIDS status to infected children, 2) stigma and the 
disclosure process with children, and 3) the role of clinical social workers in 
facilitating the disclosure process.

         he most common means of human immunodefi ciency virus (HIV) 
transmission to children in the United States is through mother-to-child 
vertical transmission during pregnancy (Center for Disease Control [CDC], 
2006a). Perinatal transmission increased throughout the 1980s and peaked 
during the early-to mid-1990s, during which time an estimated 1,750 children 
were born perinatally-infected each year (CDC, 2004; Lindegren, et al., 1999). 
Since the beginning of the HIV and AIDS epidemic in the United States, about 
57% of perinatally-infected children have died as a result of AIDS-related 
complications (CDC, 2004; 2006a). Since the mid-1990s, the introduction 
of ARTs combined with HIV and AIDS testing among pregnant women has 
signifi cantly reduced the risk of mother-to-child HIV transmission (CDC, 
2006a; Lindegren, et al., 1999). By the year 2000, the number of perinatal 
HIV and AIDS infections had decreased to about 325 annually. Currently, an 
estimated 9,419 perinatally-infected children are living in the United States 
(Wiener & Battles, 2006). Still, disclosure of an HIV and AIDS diagnosis 
remains a challenging topic for parental caregivers. Research indicates that 25 
to 75% of school-aged children with HIV or AIDS do not know their status 
(Blasini, et al., 2004; Lester, et al., 2002; Mellins, et al., 2002). The American 
Academy of Pediatrics recommends that all HIV-infected and AIDS-positive 

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school-aged children be disclosed to and educated regarding their diagnosis and 
health status (Committee on Pediatric AIDS, 1999). The majority of perinatally-
infected children living with HIV and AIDS are African American (60%) and 
Latino (20%) (CDC, 2004; CDC, 2006a).

Stigma and HIV and AIDS Diagnostic Disclosure

         The use of ARTs has made perinatally- and adult-acquired HIV a disease 
comparable to cancer in terms of its clinical course as a chronic, long-term, 
sub-acute, yet life-threatening disease (Mellins, et al., 2002; Brown, Laurie, 
Pao, 2000). However, unlike cancer, HIV and AIDS has greater social stigma, 
perhaps related to the high HIV transmission rates and short-term life 
expectancy of AIDS-infected homosexual and substance abusing populations 
during the 1980s and 1990s (Fife & Wright, 2000). The stigma is highly related 
to the fact that the virus is often transmitted through sexual contact (Valdiserri, 
2002). Though male-to-male sexual contact remains a risk factor, the risk of HIV 
transmission through heterosexual sex and drug use is greater still. Moreover, 
research has shown that many misconceptions exist about the actual modes of 
HIV transmission (Herek, Capitanio, & Widaman, 2002). 
       Several factors affect a caregiver’s decision to tell a child of his or her 
HIV or AIDS status. Social stigma is a primary reason why parents are reluctant 
to disclose. A desire to protect the infected child from social ostracism combined 
with a sense of guilt related to mother-to-child transmission of the virus may 
plague the family system (Committee on Pediatric AIDS, 1999; Blasini, et al., 
2004). In addition, parents may be concerned that the child may then disclose to 
others, jeopardizing the social standing of all family members (Nehring, 2000; 
Lashley & Malm, 2000). Fife and Wright (2000) noted that the social stigma 
associated with HIV and AIDS is related to internalized feelings of shame and 
social isolation. 
      The current literature examining HIV and AIDS disclosure to children 
has posited contradictory research fi ndings about the impact of disclosure on a 
child’s health and mental health outcomes. Some studies have shown that HIV 
and AIDS status disclosure to children generally results in positive outcomes for 
both children and their parental caregivers. Parental caregivers have reported 
a sense of relief after disclosure, as well as lower levels of stress, compared to 
parental caregivers who have not disclosed (Blasini, 2004; Committee on 
Pediatric AIDS, 1999). Contrary to caregivers’ concerns related to social 
stigma, there are no indications that knowledge of HIV and AIDS diagnosis 

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signifi cantly increases psychological distress or mental health problems among 
children (Wiener & Battles, 2006). A growing body of literature suggests that 
children who are disclosed to have higher self-esteem and are less depressed 
compared to their non-disclosed to counterparts (Mellins, et al., 2002; Committee 
on Pediatric AIDS 1999). 
       Mellins, et al. (2002) suggested that the burden of an “unknown secret” 
may be psychologically taxing and create worrisome thoughts for a child. 
Another study suggested that the occurrence of psychiatric disorders among 
perinatally-infected youth were comparable to the occurrence in non-infected 
youth, suggesting that perinatally-infected HIV youth were not at greater risk 
for mental health diffi culties (Mellins, 2006). Furthermore, disclosure seems 
to be an important factor in garnering social support around the diagnosis and 
the child’s care. The earlier children learn about their HIV status, the more 
people they disclose to by the time they reach adolescence (Wiener & Battles, 
2006). Having friends and relatives who know these children’s medical status is 
important for social support. Children and adolescents living with HIV and 
AIDS who are not disclosed to exhibit more confusion about their illness and 
medication compliance (Abadia-Barrero & LaRusso, 2006). Over time, these 
children may become cynical about their care and develop attitudes of shame 
and anger. 
    Other research, however, has highlighted the negative outcomes of 
disclosure. For example, disclosing HIV and AIDS status to friends and 
family may heighten caregiver and child stress levels and feelings of anger, 
particularly because disclosure to family and friends may be only in response to 
the child’s declining health (Ledlie, 1999). These increased feelings of stress and 
anger, in turn, may decrease medication adherence (Garvie, 2006). Furthermore, 
some parental caregivers have reported that, following disclosure, their child 
experienced emotional distress due to concerns about his or her own long-term 
reproductive and family planning (Mellins, 2002). Contrary to other fi ndings 
regarding perinatally-infected children, Gaughan, et al. (2004) reported a higher 
incidence of psychiatric hospitalizations among children and adolescents living 
with HIV and AIDS along with a signifi cantly higher occurrence of depression 
and behavioral disorders. Still, despite the lack of consensus, Battles and 
Wiener (2002), in a  review of the literature, noted that most researchers found that 
disclosure is positively related to social support, feelings of self-competence, 
and decreased behavioral problems among children.

The Diagnostic Disclosure Process

DIAGNOSTIC 
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       As children perinatally-infected with HIV and AIDS age, disclosure of 
their HIV and AIDS status by caregivers, medical professionals, social workers, 
and psychologists becomes a sensitive yet important clinical issue that must be 
addressed. Disclosure of HIV and AIDS status at an early age is important for 
several reasons. First, children perinatally-infected with HIV and AIDS are most 
likely to be urban, low-income, and African American or Latino (CDC, 2004). 
Studies have shown that this population is especially at risk for an early onset 
of sexual activity and drug use (CDC, 2004). As a result, this HIV and AIDS 
infected sub-population is at an increased risk of transmitting the virus via sexual 
intercourse and drug use (Browning, Leventhal, & Brooks-Gunn, 2004). 
     In addition, research has suggested a signifi cant correlation between 
disclosure and positive health status as measured by viral load. Children 
who know their health status are more likely to adhere to an ART and have a 
lower viral load, demonstrating a better health status (Blasini, et al., 2004). 
This is important because failure to adhere to an ART regimen may result in 
treatment resistance, therefore compromising the child’s long-term health
prognosis (Matsui, 1997). In this way, disclosure is closely related to 
transmission prevention and the child’s health maintenance. 
      Ideally, disclosure should be conducted gradually throughout the child’s 
development and include the support of health and mental healthcare 
providers. Disclosure should never occur as a “single revelation” (Domek, 2006). 
Parental, peer, and mental health staff support are all key to successful disclosure 
(Blasini, et al., 2004). As with grieving around other chronic, potentially terminal 
illnesses, children and adolescents with HIV and AIDS will likely go through 
the following stages of grieving: anger, bargaining, depression, and ultimately, 
acceptance (Blasini, et al., 2004; Kindy-McPherson, 2005). Immediately 
following disclosure, children report feeling shocked, sad, angry, worried, 
and confused (Mellins, et al., 2002). Over time, children’s anxious feelings 
generally become more neutralized, and many have reported feeling hopeful 
about their prognosis. Domek (2006) noted that it may take children some time 
to understand the nature of their diagnosis, necessitating an ongoing, open 
dialogue of what the disease is and what the diagnosis means. In addition, 
disclosure may provide a context to reveal other family secrets, such as 
other infected family members, the child’s biological parents, the child’s health 
prognosis, and that the child was perinatally-infected.
          Though families may be in denial and refuse to disclose to their children, 
it is not uncommon for children to “accidentally” learn of their diagnosis by 
overhearing conversations or reading something related to their health status 

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67

(e.g., medical charts, insurance paperwork, or school medical records). Or, 
for example, a child may discern that he or she has a medical condition based 
on family members’ behaviors, a consistent medication regimen, and ongoing 
medical care (CHAMP+, 2007; Lester, et al., 2002). This type of accidental 
disclosure is dangerous and should be avoided because emotional isolation may 
develop as children independently attempt to make sense of what their diagnosis 
means and why it has been hidden from them (Blasini, et al., 2004). 
      Despite these risks, social work clinicians should not force a parental 
caregiver to disclose to a child, and they should remain non-judgmental about 
the guardian’s decision around disclosure; clinician respect for each family’s 
right to self-determination is most important. The clinician’s fi rst and foremost 
role is to provide ongoing support to the family system, taking into consideration 
the family’s community and ongoing stressors (Kindy-McPherson, 2005; Lester, 
et al., 2002). Less expressive and less communicative families, who are also less 
likely to disclose to their children, may need additional support  (Lester, et al.). 
      The disclosure process should take into consideration the child’s age, 
maturity, cognitive functioning levels, and ability to handle the diagnosis 
(Committee on Pediatric AIDS, 1999; Lester, et al., 2002). While younger 
children should receive simple explanations about their medical condition, older 
children should be provided with full disclosure and be encouraged to actively 
participate in their own medical care (Committee on Pediatric AIDS, 1999). 
Due to developmental differences, children and preadolescents understand that 
HIV and AIDS are serious illnesses, but they do not relate it to their future, as 
adolescents do (Blasini et al., 2004). This likely refl ects adolescents’ 
emotional, social, and physical development, and their general interests in 
romantic relationships and considerations around family planning. 

Implications for Social Work Practice

        Social workers may encounter perinatally-infected youth in a number of 
contexts, including hospitals, outpatient pediatric AIDS clinics, child welfare 
agencies, and schools. Within these settings, where there are few interventions 
tailored to the needs of perinatally-infected children, social workers are in a 
unique position to provide mental health service support for this population’s 
ongoing and emerging mental health needs. Social workers’ skill sets in the 
areas of engagement, assessment, advocacy, case management, and crisis 
intervention, combined with their conceptual grounding in ecosystems theory, 
make them especially qualifi ed to assist families facing enormous psycho-

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social-environmental problems related to the disclosure process. 
      A full understanding and consideration of the child’s particular family 
circumstance and health status is imperative. The child’s family repre-
sents a group directly affected by HIV and AIDS. At a social worker’s point 
of contact, the child may be living with an infected parent, a non-infected 
parent, within the foster care system, or with another family member, such as a 
grandmother or uncle. Furthermore, the child may also have infected siblings 
and other family members, or be the only infected person within the entire 
family. In addition, some perinatally-infected children may be very healthy; 
others, however, may be chronically ill, very symptomatic, and present with 
signifi cant immunological deterioration (Lester, et al., 2002). The mental health 
status and daily concerns of these two populations may be very different. 
   Psychodynamic, emotional peer support groups for HIV-infected 
adolescents can help reduce the risk of depression and increase medication 
adherence (Funck-Brentano, 2005). Disclosure to preadolescents and 
adolescents should include a psycho-educational component and at least some 
discussion about self-care and responsibility related to future independent 
living (Battles & Wiener, 2002). Clinical work with this population should 
include a thorough sexual education component and foster the development of 
communication skills related to negotiating safe-sex practices and 
disclosing HIV and AIDS status to sexual partners. Furthermore, “one stop care” 
that offers counseling and social support, case management services, standard 
medical care, reproductive care and education, enables social service and 
medical providers to collaborate and offer responsive, comprehensive care 
along a continuum that addresses this population’s unique needs (Levine, 
Aaron, & Foster, 2005).

Conclusion

       The onset of adolescence combined with the uncertainty of a chronic, 
life-threatening, and highly stigmatized illness undoubtedly creates a context 
for fear, anxiety, and feelings of isolation among perinatally-infected HIV and 
AIDS positive children and adolescents. Disclosure, especially early on, may 
buffer these feelings, providing the child with an increased sense of hope, 
confi dence, and self-esteem. These children are likely to confront a host 
of other issues, including poverty, discrimination, mental health issues, 
violence, sexual abuse, limited access to health care, and lack of familial support. 
Responsible, clinician-led support may serve as the basis for the development 
of self-agency, resiliency, self-advocacy, and self-actualization among these 

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children (Battles & Wiener, 2000; Brown, Lourie, & Maryland, 2000, Domek, 
2006; Kindy-McPherson, 2005). 

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Fife, B. & Wright, E. (2000). The dimensionality of stigma: A comparison of 
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NATASHA K. NALLS is a second year master’s student at CUSSW 
within the Advanced Generalist Practice and Programming method in the 
Health, Mental Health, and Disabilities fi eld of practice. She currently interns 
at Mount Sinai School of Medicine in the Department of Psychiatry, where 
she assists with research implementation and coordination. Ms. Nalls holds a 
bachelor’s degree in Spanish and Leadership Studies from Claremont McKenna 
College. Her email address is nn2144@columbia.edu.

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