Telling the child
Disclosing to Our Children
What the HIV Experience Has Taught Us
By Christine Kukka
If hearing your child is infected with HIV or hepatitis B or C is the
worst
that can happen to a parent, telling your child about the infection
runs a
close second.
When should a parent disclose? How should they tell them? What will a
child
ask? Will they ever forgive the parents who infected them? Are silence
and
secrecy justified to protect a child from a painful diagnosis?
Two pioneers who have peered into the disclosure cauldron are Lori W.
Wiener, coordinator of the Pediatric HIV Psycho-Social Support and
Research
Program at the National Institutes of Health, and Heidi Haiken,
coordinator
of Social Work at the Francois Xavier Bagnoud Center in Newark, N.J.,
an
innovative program that works with parents and children with HIV.
For more than 10 years, Haiken and Wiener have worked with hundreds of
families infected and affected by HIV on the emotional and social
issues
related to the disease. Wiener, who has a PhD, has researched and
written
about the impact of disclosure on family members.
Their combined experiences have produced two cardinal rules for parents
of
children infected with chronic, viral infectious diseases:
· Never lie. You don't have to name the disease if children are very
young,
but never, never lie. The damage to the parent-child relationship will
surpass any short-lived benefits gained by deceit. Disclose as early as you can, especially once kids start asking
questions.
The longer you wait, the harder it gets and the greater your chance of
undermining your child's trust in you.
"We even tell parents who come to the center that if they don't tell
the
kids by the time they reach sexual maturity, we will," Haiken said.
"But of
course it's much, much healthier to have this information come from the
parents."
Both women acknowledge that disclosing is very traumatic for parents.
"For
some parents, it's just devastating," said Haiken. "They feel guilt
because
they infected the child because of their past sexual behavior or drug
use.
They feel guilt that the child has to suffer. Even for parents of
children
who contracted it from transfusions or are adopted, disclosure is
extremely
difficult."
Wiener, who has written several research papers on this topic, found
the
longer parents withheld the diagnosis, the more embedded the lies
became and
the harder it became to disclose the truth. "Parents often fear that
once
they disclose new and different information, that their child will no
longer
trust them," she said. "Following disclosure, many of these children
feel
embarrassed that other people in their family have been aware of the
diagnosis before they had been informed. Once disclosure takes place,
these
issues and feelings can be successfully dealt with in individual and
group
counseling sessions with parents and children."
Haiken and other social workers at the center work hard to help parents
work
through their guilt, or at least face it without flinching, before they
disclose.
"I tell them you didn't mean for this to happen, it's clear you never
wanted
to hurt your child, look at all the wonderful things you've done for
your
child," said Haiken. "After a while they get there, they see it, but
it's
still very difficult. No parent ever wants to infect her child. It's
something they felt they had no control over."
In terms of disclosure, parents who are themselves living with HIV have
additional challenges to face. They fear disclosing their own
life-threatening disease to their children. But generally, says Wiener,
by
the time children reach ages 6 to 10, they realize the consequence and
finality of death. It is useless to shield children this age from the
knowledge that their parents have a serious or terminal illness.
The disclosure process, timetable and style are often dictated by the
parents' health. Can they focus on their kids and execute disclosure,
or are
their own health problems overwhelming? Are they getting the support
and
time they need or are their own medications, insurance forms and other
factors too overwhelming?
"Foster or adoptive parents have the luxury of not having to worry
about
their own illnesses, so the emotional and financial stress on the
entire
family may not be as intense," noted Haiken.
The journey to disclosure begins early, says Wiener. "The child and
parent
should first have a sense of trust - that is the highest priority."
Disclosure occurs little by little in age-appropriate ways as soon as a
child can communicate. Just like talking about adoption, it's always on
the
table, though not all the details or medical terms may be exposed just
yet.
Ideally, when the parent discloses the conversation should go something
like
this, suggests Wiener.
"Do you remember when I told you that you had a germ in your blood?
That's
why we have blood work done every year. (And) Do you remember I told
you
that you got the germ from blood? Well, that germ is a virus that is
called
HIV or hepatitis.."
"You see, the disclosure dialogue is a constant building process," she
said.
"If the child asks why the parent didn't tell them earlier, the parent
needs
to be able to say, 'I never lied to you, I told you what was wrong, I
just
hadn't told you name of the virus."
It may take a child weeks, months or years to absorb the diagnosis.
"Try to
be where the child is at when they ask questions," wrote Wiener. "Let
the
child know that no matter how difficult the subject matter, he or she
can
always ask questions or share feelings. Be careful, however, not to
provide
more information than the child wants or is prepared for. They may not
be
ready for a virology discussion.
"You never want to be in the position of telling a 12 year-old about
his or
her disease that you have never even referred to before," she added.
"That
is my main concern in the disclosure process. We've interviewed a lot
of
children who have been disclosed to. Most felt they had been told at
the
right age and by the right person except those whose parents had a
doctor
tell them. Those were the only kids who remained upset about the
disclosure
process."
At NIH, counselors work intensely with parents of HIV-infected children
to
prepare them for the disclosure discussion. Social workers even have
parents
write out what they will tell their children and then play the part of
the
child in role-play situations. Generally, parents should be prepared to
answer the following questions, depending on the child's age and
development. (Some questions apply if the parent is infected also.)
· Why did this happen to you?
· Where did you get it from?
· Are you going to die?
· Am I the reason you got sick?
· Who else in the family has it?
· Why do I have it?
· Why don't (siblings) have it?
· Am I going to die?
· Will this hurt?
· Who else knows I have this?
· Who can I tell?
· What will happen to me and (siblings)?
· Can I get married? Can I have children?
Here are some general guidelines Wiener has identified for parents to
consider as they prepare for the disclosure discussion.
1. Where do you want to make the disclosure and who should be part of
the
discussion?
"You don't want to have a ton of people there, just those whom the
child
trusts and feels most comfortable with," cautioned Wiener. "Try to
anticipate the child's response based on his or her emotional age and
maturity. Be careful never to disclose when you're angry, or during an
argument. Have the discussion in a safe, comfortable environment."
2. What is the most important message you want your child to walk away
with
from this discussion?
Possibilities include: Nothing is going to change. I am just now giving
you
the name of the virus. We will always be there for you. I will never
lie to
you... Nothing you did caused this disease.
3. How exactly will you disclose the actual diagnosis?
"We have parents write out how they'd like it to happen, and they
always
start out with, 'Do you remember?' Weave in pertinent aspects of the
child's
life and pick up the threads of your past discussions about
infections,"
suggested Wiener. "Rehearse the questions and answers, including 'How
did I
get it? Can I get married? Can I have kids? Who else knows about it?'"
4. If the diagnosis is to be kept secret, who else can the child talk
to?
"If parents tell a child not to tell anyone, the first thing a child
will do
is go tell someone," said Wiener. "They'll feel resentful if they have
no
one to talk to. Parents need to find others in the community for the
child
to talk to. If there isn't anyone nearby and the child wants to tell
his or
her best friend, I would tell them to talk with me, the parent, first.
I
would explain that not everyone is as educated as we are, and it's
important
that we make a plan and educate the friend about this infection first.
After
all, we don't want anyone to treat us badly."
5. Give child a journal or diary or a way to express their feelings
about
the infection. Encourage the child to use art or writing to express
feelings. "If HIV had a face, what would it look like? Or start a
discussion
with, 'If I had a million dollars, I would get rid of this virus. What
would
you do with a million dollars?' Keep those discussions going," Wiener
suggested.
"It is usually not until days or weeks after disclosure that the child
has
the courage to ask more questions," she added. However, after finally
making
the disclosure, some parents feel so relieved and so exhausted from the
ordeal that they may not have the emotional energy to talk about it
again.
This blocks open communication at a time when sharing concerns about
the
disease and its impact on the family is most important.
6. Red flags to look for in a child following disclosure.
These include difficulty sleeping, changes in appetite, withdrawal,
ticks, new fears, mood changes, difficulty concentrating or hoarding
things.
If you see any such problems, talk to your child and if necessary, seek
help
from a social worker or psychotherapist. Remember, disclosure is not a
one-time event and a child needs constant reassurance that they did not
cause the disease.
7. Don't forget siblings in the disclosure process.
Whether or not a sibling is told depends on age, said Wiener. "If the
sibling is close in age, I don't make it a choice, the sibling must be
told.
But, I do give them a choice of whether the infected child tells the
sibling
or if the parents tell the sibling. You need to give the child a sense
of
control. Living with secrets in the home does not promote a healthy
emotional climate. I try to minimize the amount of secrets or lying
that's
going on. However, if there's a medical procedure or if they're on
interferon which makes them grouchy, it's important that siblings know
why."
Even after disclosure is made, the full reality of the diagnosis may
not
come about for years. "It may not be until someone dies, or they get
sick
for the first time or they can't go to a party and drink like everyone
else
that the reality really sinks in," said Wiener. "At that point, it
becomes
an emotional reality, not just an intellectual reality."
Wiener finds most parents do feel relief after making disclosure. The
burden
of secrecy is lifted, and children who already intuitively know
something is
wrong often feel better after they are told of their diagnosis.
Siblings,
especially if they are older, are also relieved when the veil of
secrecy is
lifted.
"The demands of keeping the family secret is a heavy burden for a young
sibling and may threaten healthy development," Wiener wrote in a study
of
siblings of HIV-infected children. "As inquisitive peers begin asking
siblings why their brother or sister is sick, it becomes increasingly
difficult not to tell the secret. One 9-year-old girl describes: 'I
want to
tell people. Right when I almost say it, I remember in my head I'm not
allowed to.'"
Resentment of the special treatment given to the sick sibling may cause
the
healthy sibling to feel less loved, Wiener explained, particularly if
no
explanation for the preferential treatment is provided.
Heidi Haiken, who has worked with more than 400 HIV-infected kids, has found
disclosure to be beneficial to parents and kids alike. "By and large,
the
kids do well and are glad they've been told," she said.
But disclosure is just a step in the journey. Parents must be prepared
to
ask, probe and continue the dialogue about health safety, standard
precautions, medical treatments, good nutrition and the fundamentals of
safer sex with their infected children.
"In our program, we start teaching safer sex at age 10 to 13," said
Haiken.
"We give out condoms, talk about masturbation and how to keep yourself
and
your partner safe. We don't deny they're sexual beings, we focus on how
to
be safe with it, how drugs and alcohol can make you do things that
aren't
safe."
That safer sex discussion is just one more elaboration on the
discussion
that began when parents tell their infected toddlers never to touch
anyone's
"boo-boos."
Most parents of infected children and teens don't have a Heidi Haiken
or
Lori Wiener in their hometowns. And, they can't count on local schools
to
teach standard precautions or to delve into the nitty gritty of safer
sex
procedures. Most parents must be open and honest as they continue these
discussions, no matter how painful or awkward, throughout their
children's
lives.
(Above from the Pkids
Mailing List Archive)
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