| To Disclose or Not to Disclose:
The Dilemma Confronting Families Living with HIV/AIDS
By Raquel Silverio
Coordinator, The Child Life Program
Women & Family Services Department
Please consider the information presented in this article as informational
only. Before making any decision, it is recommended to access counseling
and legal services consultation.
There is no doubt that HIV/AIDS has created a crisis in the family.
The traditional life stages in individual and family development
are significantly challenged by a diagnosis of HIV. Disclosing an
HIV diagnosis poses a particular challenge and is not an easy task.
It requires parents to listen to their own fears and concerns, and
to be able to express their feelings. It is a task that requires
time and emotional support.
HIV disclosure isn't a topic that comes naturally for a family
discussion, especially when children are involved. As a parent,
you might be struggling with the following questions:
- What is the appropriate age to tell a child about my HIV status?
- How will the child receive this information?
- How will this information affect the relationship between us?
- Should all the children be told at the same time?
- Will the children be stigmatized or experience discrimination
if their friends find out that I am HIV-positive?
- What kind of support will my children need to deal with this
new information?
Disclosing is a significant family event in which timing is a critical
component. When deciding to tell your children or even a loved one
that you are infected with HIV, it is important to take your time
and not feel pressured to do so. All families are unique
and there are no set rules regarding when and how to disclose to
your children, other family members, or friends.
Barriers to Disclosing HIV Status
Parents need to consider their own readiness to share this information
with their children and whether or not the children are ready to
understand and live with the knowledge of their parent's disease.
The difficulties that parents experience in making the decision
to disclose is based on the real and imagined fears about how the
family and the community will react. Some of the barriers and challenges
are: fear of rejection, stigma and discrimination, fear of the disclosure
event and impact on the family.
Fear of Rejection
The stigma associated with the transmission of HIV makes parents
fear negative moral judgments from family and friends. As a result
parents experience a great deal of internalized guilt and shame.
They fear being rejected and abandoned by their support systems
(family, friends and the community) and often times feel like a
burden to the family. Besides rejection and isolation, some parents
also fear being the victim of discrimination and violence as a result
of HIV disclosure.
Fear of the Initial Disclosure Conversation
Disclosing an illness to a loved one is never easy. Because families
are unique, there is no "right" way to share this information. Parents
should try to think of this event as a process that may require
several conversations and continuous open communication. Initially,
parents fear that they will be unprepared to answer questions raised
by their children and family members related to the disease. However,
with support and coaching, parents can work through these feelings
of fear and inadequacy around initiating and engaging the family
in these difficult conversations.
Impact on Children and the Family
Many parents struggle with when to tell their children. HIV disclosure
is not an event or a one time conversation. It is a process that
takes time and constant communication with your children in an age
appropriate manner. Just as families are unique, so are children
and they react to information in individual ways. Children need
support and someone with whom they can feel safe sharing their feelings
and talking about HIV. When disclosing to your children, realize
that they may be faced with numerous feelings around what it means
for them as well as for you. Children might feel:
- Fear that mommy or daddy is going to die or fear that they will
also "catch" HIV. If the child is HIV positive, he or she might
feel responsible for mommy's or daddy's sickness.
- Fear that other children in school or the community will make
fun of them or their parents or that they might lose support from
friends or family.
- Depending on their age, children will express their feelings
in different ways, i.e., extreme anxiety about the present and
future, sadness, anger, denial, feeling that they are now the
caretakers of the parent.
- Children may have difficulty coping with disclosure information
and this may lead to changes in behavior. For some children it
may include "acting out" in school, i.e., fights, low grades,
missing school days, as well as anger, crying fits, or no expression
of emotion.
Benefits of HIV Disclosure
While there are many barriers to HIV disclosure, there are also
benefits that have both short and long-term impact on the family.
HIV disclosure can:
- Help create a sense of closeness in family relationships
- Help reduce feelings of anxiety and isolation
- Help build social support networks
- Relieve the burden of living with the secret of being HIV-positive
- Make permanency planning more meaningful and increase the chances
of success of the plan because the children can participate in
the process
- Increase access to HIV support services for affected children
- Reduce anxiety that children experience because they suspect
something is wrong. They will now have all the information they
need to make better sense of the situation.
Family Disclosure Planning
It is important to remember that there is help available and you
do not have to do this alone. Family composition, emotional needs
and availability of long-term support vary for each particular situation.
GMHC's Women and Family Services Department can help you sort out
many of the feelings, fears, doubts and questions that you have
around the disclosure process, by developing a Family Disclosure
Plan. This plan will allow you to answer the following questions:
- Why do you want to tell your family?
- Who needs to know?
- What do you think they will do with the information?
- What are the benefits of disclosing to them?
- What are your expectations? Are they realistic?
- Will you regret not telling them in the future?
Remember that there's no set manner or protocol to the disclosure
process. Each family has its own roadmap and journey. Discussing
these questions, with a counselor, will help you identify the challenges
as well as the strengths and communication patterns in your family.
For more information and support about the HIV disclosure process
please contact us at Women and Family Services Department, 212.367.1366.
Information for this article was obtained from the following sources:
Teddy Holtz, C.S.W "Issues of AIDS-Affected Children and Youth,
AIDS Family Support Services, L.E.G.A.C.Y. Program, Volunteers of
America. Michael Lipson, PhD, (1994) Disclosure of HIV Diagnosis
within Families: Guiding Principles, Harlem Hospital Center, New
York, City . Lawrence Kutner, (1993) Parent & Child: Sharing family
secrets calls for discretion, The New York Times. Case Management
Center of Expertise, SUNY Stony Brook Center for Public Health Education
(2002), HIV Disclosure: Deciding Who and When to Tell.
Web sites: "How to tell your child that you're HIV Positive"
- www.fxbcenter.org
Health on the Net Foundation at www.hon.ch/News/HSN/510179.html
© 2003 Gay Men's Health Crisis |
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