Do tell. Otherwise your child may develop strange fears and jump to wrong conclusions
Communication in the family and especially to children about HIV is fraught with complication. Just the very topic on its own is an almost taboo subject and families struggle to explain to their children the origin, nature and manifestation of it. Do you imagine therefore how compounding this complexity gets when the situation involves a family member?
Parents undergo a very troubled time weighing the pros and cons of disclosure or non-disclosure and where the former reigns, many questions perturb the concerned parent’s mind including:-
• Should I talk to my child about HIV at all?
• Why should I tell my child about HIV?
• How shall I talk to my child about HIV?
• Who exactly should tell my child about HIV?
• Where and when should I talk to my child?
• What do I tell my child and what not?
• What type of questions will they ask?
• How will my child react?
• How can I support my child?
• Where can I get help/ support for myself?
The communication around a family member’s HIV diagnosis and status be it the actual child or parent, their spouse, the child’s brothers or sisters needs to be handled with as much sensitivity as possible. As a parent, you will need to very open and honest. It is critical that your child hears about HIV from you. Many parents although hesitant to speak openly about this topic, don’t want their children to find out the truth from someone else, or get misleading information from the TV or other sources.
“I never wanted my child to feel they could not trust me by finding out I hadn’t told them the truth sooner……..”
“Keeping secrets is hard and keeping a diagnosis secret can be very stressful not telling made it so awkward at home………”
Overcoming one’s own trepidation about the anticipated reaction from their children is a big step towards dealing with the situation as best possible. It is comforting to remind ourselves that children have an amazing ability to deal with truth. Sometimes much better than adults themselves. Children often know that something is wrong and if you make the assumption that you are protecting your child by not telling them, they may end up having strange fears and jumping to conclusions that are worse than the real thing.
You cannot stop a child from feeling sad on discovery of the news, but you are definitely in a position to provide adequate information to help them make sense of HIV in general and what is happening to them or a member of the family in particular. And most importantly you can offer them support in their sadness. You are strongly advised to help your child feel more in control and be as knowledgeable about the situation. Where it is the specific child who is ill, they may be more compliant with their treatment if they understand why they need it.
”It was important for him to know about his HIV so that he could be more involved in decisions about his treatment……..”
HIV, whichever angle you look at it, presents an emotional situation. Parents whose children are affected go through various stages of worry and are plagued by a myriad of feelings when considering the need to disclose the situation to their child.
“I’m not sure I feel ready to tell. However old he is, always going to be my baby, so it’s always going to be hard to tell him……..”
The difficulties include the fact that parents go through many different feelings themselves at the time including: that they just can’t face talking about it yet; that they imagine it would be too much for their child to cope with; that they want to wait until they are older and more mature; or don’t know what to say.
“I want to say something and talk about it but I don’t know how to……..”
The stigma surrounding HIV has so often resulted in a negative psychological state and after disclosure discomfort. This increases parents worry million fold. They worry their child will tell others and worry more that their child may tell people they wouldn’t want to ever know. And they speculate about the impending uncomfortable consequences. And quite unfortunately, there is still a lot of misunderstanding about HIV and social reactions quite reflect the same.
“I don’t want to say too much, in case he tells other people. I don’t know how they will react to him.”
And of course the principal question on every parent’s lips is – What exactly do I tell my child? The most important outcome of this disclosure is to help your child make sense of what is happening to them. And contrary to popular belief, they do not need to know everything at one go. The telling process depending of course on the age and cognizance level of the child may occur over time, step by step. Let the child know illness is part of their life. Talking with your child about their illness and telling them about HIV isn’t going to happen on just one occasion. If they are really little, long before you think they’re ready to know the name of the condition, ensure you tell them in little bits as you deem relevant. Also, make a point to take advantage of the opportunity life throws your way. For example, when things crop up in books you’re reading together, on television or at hospital visits, use the opportunity to explain matters as simply as possible.
The disclosure process is not set in stone and every single situation is unique in its circumstance. However, the general non-negotiable guidelines include: being absolutely honest, do not lie to your children; do not use jargon, use simple words that they will understand and internalize; be prepared to answer their questions and to repeat information you have shared, over and over again; try not to dwell on the negative things; and look for positivity in the situation no matter how small it looks. But most important of all, let them know that no matter what they hear out there from whichever source, they should not worry and come to you to further discuss and share. Reiterate to your child often that you are a source of truthful information and comfort.
*An adaptation of Agnes Ngatia’s (Obstetric Unit –The Nairobi Hospital) presentation on Communicating to Children about HIV at The 14th Annual Midwives’ Scientific Conference Nakuru, Kenya
Nicola Willis, Marcus McGilvray, Lisa McNally, Robert Pawinski – Paediatric Palliative Care Manual For Home Based Carers – www.aidsmaps.com
Magda Conway- Developing support services for children, young people and families living with HIV – www.ncb.org.uk
St George’s Paediatric HIV Team- Paediatric Infectious Diseases, Talking To Children With HIV About Their Illness – www.aidsmaps.com
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