102 Grief and Loss Across the Lifespan
beloved dogs as a “way to stay healthy.” Another little girl had a father who
took statins to prevent plaque build-up, and although the girl did not under-
stand all the implications of her father’s medicine, we used the same idea of a
medicine taken to stay healthy.
Eventually, children seem likely to ask, or our doctors urge parents/
caregivers to disclose the diagnosis to their child. This can be done during a
clinic appointment or privately at the family’s home. Children between the ages
of 9 to 11 have the capacity to comprehend how their immune system works and
also understand that there are subjects we do not discuss with others outside
of our home. As with Ashley, the physician and social worker meet with the
child and caregiver. When asked whether she had ever heard of the HIV, Ashley
denied it, but her eyes told us differently. The doctor explained how the medi-
cine she takes “keeps the virus” under control and “helps her immune system be
strong and healthy.” We start laying out the beginning of a story we will reiterate
often over the next several years. Using developmentally appropriate materials,
we will continue to help Ashley learn how to live with HIV.
With Ashley, whose mother died of HIV/AIDS, we will need to help her
understand how far medicine has come. With adequate health care and medi-
cine adherence, she will live with HIV infection as a chronic illness rather than
as a quickly debilitating disease as in earlier decades. Helping her understand
how her situation differs from her mother’s will be important. This will be dis-
cussed at a later time and be a part of the discussion of how HIV is transmitted.
As Ashley grows, our explanations and health considerations will mature too.
Although in the past few decades there have been many advances in HIV
treatment, a child born with HIV may still have multiple burdens and losses
brought on by being HIV positive. Some of these burdens may include: com-
plicated medication regimes, increased medical appointments, convoluted
family histories which often include the death of one or more parent, involve-
ment in child welfare services, community stigma, and trauma related to HIV
disclosure and treatment. Still another burden for Ashley and other children
with HIV infection is to manage the already complicated sexual development
of adolescence and young adulthood while keeping themselves and their part-
ners healthy. Helping children and teenagers explore what being HIV positive
means to them is an ongoing process that keeps all of our psychosocial staff
engaged and busy.
As children approach their “tween” years, there is also a large component
of psychosocial education related to sexuality and sexual development, which
includes information on how to make healthy decisions about sex. We initiate
discussions about HIV transmission, safer sex behaviors, the disclosure pro-
cess, and other topics teenagers need to understand as they begin to express
their sexuality. There are certainly added responsibilities and burdens to the
sexual development process when a teenager is HIV positive.
Research with teens in the United Kingdom indicates that they experience
a tension between fearing that others would view them as “damaged” due to
their HIV positive status and consciously insisting that HIV is only a small
part of their identity; this tension affects thoughts about disclosure to friends
and romantic partners (Hogwood, Campbell, & Butler, 2013). Hogwood et al.
(2013) found that most teens in their small study elected not to disclose their
HIV status to their romantic partners. This portends other losses to come as