Children with H.I.V. and A.l.D.S.

The Challenge of Secrecy

By Rita Travers, Medical Social Worker

There are many unique issues that differentiate children who are H.I.V. positive or meet the A.I.D.S. definition and their families from families fac­ing other childhood life-threatening illnesses.

In other childhood illnesses, usually only one child in the family is ill. In H.I.V. infection, other siblings may have the virus and one or both parents. A whole family may be facing death. It is truly a family disease. Parents suffer enormous guilt that their child is infected. The disease carries a huge social stigma which leads to the diagnosis being shrouded in secrecy and children being unaware of the nature of their illness. For those who work with the children and their families, it is secrecy which creates the biggest difference in how we intervene and how families cope.

This article will focus on secrecy, why it arises, how society contributes to it, how it impacts on children and challenges the family and professionals.

The author writes from the experience of working with children who are H.I.V. positive and their families. Our Lady’s Hospital for Sick Children, Crumlin, is the main centre for paediatric H.I.V. care in Ireland where the route of transmission is predominantly mother to child.

STATISTICS:

In Ireland, 127 children have been identified as being born to mothers known to be H.I.V. positive. Of these children, 35 have been diagnosed to have the virus themselves. Seven of these children have died, one has been lost to follow-up. The remaining 30 children attend Our Lady’s Hospital and 5 babies are being monitored whose status is as yet unconfirmed.

Our parents do not form a homogeneous group, in terms of class, culture, lifestyle, as might be the popular conception. While maternal drug use, at some stage in their lives, would be the route of transmission of the virus for about half of the families, heterosexual contact would also be the route for many others.

The mortality rate among parents is high. Six mothers have died and seven fathers. However, the vast majority of the children live in stable, family environments, mostly with parents, some with extended family, where the main issues are around the impact of the virus.

SECRECY: HOW DOES IT ARISE?

Secrecy begins with the decision to test for the virus. In most cases it is the parent who tests first, but for some families, the child is the first to be tested because of medical concerns regarding that child. Most parents keep as a complete secret the fact that the test is being done. The hope is for a negative result as the implications at a personal and societal level of a positive result are enormous.

At a personal level, one might see a positive result thus:

no hope situation
life-threatening
death sentence
socially unacceptable

Many parents, on being given the diagnosis, assume they have not long to live and are filled with terror about how this illness will impact on their lives and that of their children. As parents struggle to cope with the diagnosis, who can share their burden when the illness carries a stigma of being socially unacceptable?

At a societal level, one might attach the following meaning to a positive result:

homosexual/bisexual
drug addict
sexually promiscuous
contagious

The first three labels carry connotations of deviance from the norm.

An adult with the virus might, therefore, be regarded as having brought this illness on himself/ herself through their deviant behaviour. If your child is also positive, then your child might be regarded as a victim of your de­viant behaviour.

A positive result may, in some cases, reveal a past that is unknown to others and perhaps half-forgotten about by a parent. For example, a parent may have had a sexual experience while on holidays in Europe long before he/she met their spouse/partner, or may have dabbled in drugs in inner city Dublin as a young teenager along with his/her peer group in the early 80’s, but never touched drugs since then. If a parent reveals their viral status to others, it may change their perception of that parent from being “normal” to perhaps “deviant”, so who can you risk telling?

Apart from the ambivalence that society tends to have around sex and drug use, A.l.D.S. tends to have plague-like connotations. People speak of the A.l.D.S. epidemic, the virus is seen as contagious, as having no cure. Ignorance feeds fear and leads to a belief that it would be best to avoid people with the virus. Parents would admit to having this fear themselves before the diagnosis in their own family.

In summary, secrecy arises from the personal and cultural meanings attached to an H.I.V. diagnosis. It places an enormous burden on families, isolating them from much needed support as they travel on a roller-coaster journey with a life-threatening disease.

WHAT DO CHILDREN KNOW ABOUT THE ILLNESS?

In other illnesses, children are usually aware of their diagnosis. There can be occasional difficulties around cystic fibrosis or cancer, mostly because of their life-threatening potential and because of the genetic aspect of cystic fibrosis.

Among our H.I.V. children, only one family is fully aware of their diagnosis and speak about it openly. Most of the children understand that the “fighter army” in their blood needs help to fight infection, which is somewhat on the road to the truth. They understand that the infections they get relate to their “army” which can weaken at times. Most parents are agreeable to their children having this understanding, but it has taken some time to bring this about. Previously, children were unclear about why they attended the hospital, one child thought that blood tests were blood donations!

In general, it must be said that many of the families function well without the children being told the exact nature of their illness.

SECRECY: RIGHT OF PARENTS

In Ireland, the rights of parents are very much supported by our Constitu­tion which also forms the basis for our legal system. As a society, we tend to be protective of our children in many areas of life. We need parental per­mission to discuss a diagnosis with a child. We must be respectful of the rights and wishes of parents in terms of what they want their child to know.

SECRECY: RIGHTS OF CHILDREN

Children also have rights – professionals face a huge ethical dilemma, at times, in balancing the rights of parents and the rights of children. This is particularly an issue as children with the H.I.V. virus are living longer and coming into adolescence. One may believe that a child has a right to know the nature of their illness, be involved in discussions about treatment, be able to express fears and worries, yet this must be balanced against the right of parents who see secrecy as the best way to protect the child and family.

SECRECY: PROTECTIVE, HARMFUL

Secrecy can be both protective and harmful. It is one of the deepest instincts of parents to protect their child from harm. Most parents consider that outside knowledge of the illness in the family would not alone harm the child, but the entire family.

In the United States in the 80’s, in particular, there were well publicised incidents of children not being allowed into school or, one family having their house burned, once their H.I.V. status entered the public domain. Some parents in Ireland have been rejected, having disclosed their status to a friend whom they thought would be supportive. Children may also be re­jected if the rumour that they are H.I.V. positive gains ground. Parents conclude that they will not put their family at risk of being stigmatised and ostracised and see secrecy as the best way of protecting everyone.

Secrecy impacts on the lives of parents in terms of taking care of their own health, making plans for the future and building much needed support networks.

Many parents do not take care of their own health until the degree of illness is such that it cannot be ignored. Many are reluctant to attend adult specialist services for fear that they will meet someone who knows them who will not respect their privacy and may tell others. Also, many parents do not want to be associated/identified with what they would perceive to be a stigmatised sub-group.

Parents may postpone making plans for the future in terms of who will care for the children should they become ill or die because such plans would involve informing others.

In the face of a devastating disease, having good support networks is essential. When a crisis arises in life, most people seek support from family and friends, but with a diagnosis of H.I.V. the fear of negative reactions may seal the decision in favour of secrecy, leaving a parent in what must be unbearable isolation at times.

With other childhood diseases, there is usually a Parents’ Association to promote knowledge, research, fund-raise. Secrecy prevents parents of H.I.V. children from being advocates on their behalf, again feeding into a cycle of fear and ignorance which makes this group almost hidden from public consciousness.

WHY DO PARENTS NOT TELL?

The prospect of sharing the diagnosis with their child fills most parents with great fear, which makes it easy to postpone. Most parents want their child­ren to enjoy their childhood in as normal a way as possible and not to have it overshadowed by the worry of knowing about the illness in the family.

Giving a child knowledge of their own H.I.V. status, would imply that the child would also learn about the status of their parents and the route of transmission into the family. Many parents worry about their child blaming and hating them in this situation. One parent considered that it might be best if they all died before such an event might occur.

A major worry for parents is that if the child is made aware of the diag­nosis of H.I.V. the child may not keep the secret and the family will be harmed by this.

CONCERNS REGARDING CHILDREN

In general, children overhear a lot of adult conversation and know a lot more than adults realise. Many children may have overheard the word “virus” or “H.I.V.” even if in whispered tones.

Local rumours can also reach the ears of children through local children who can be quite cruel in their comments, taunting a child that his father died of A.I.D.S. and that his mother also has it and is going to die too.

When a child tries to talk about what he has heard and to communicate his fears and upset, he may be fobbed-off, his feelings cut off as adults try to preserve the “secret”. A child may learn that talking gets you nowhere and may even get you into trouble, so it is safer not to talk. In this situation, children may become symptomatic, acting out as they seek an outlet for their emotions.

In an environment of secrecy, it becomes difficult to process feelings of grief following the death of a parent or sibling. To maintain the secret, the remaining parent may think it safer not to speak about grief at all. Parents and children may not benefit fully from joining in Bereavement Groups, as the real cause of death will most likely not be shared which means that the parent will not be able to access support fully for themselves and the child will be unaware of the real cause of their sibling’s death.

Similarly, to-date, parents have not been agreeable to their child joining a group for children whose parent/s has died of A.I.D.S. The fear is that if one child in the group knows the real cause of death, then the other children may question what they have been told.

Professionals, working with children who are dying, would be aware that children tend to have knowledge of their medical situation, but may ask no questions to protect their parent from pain and themselves also perhaps.

Similarly in other illnesses children would be seen as having the right to know the truth about their medical situation, participate in decisions, ex­press fears and feelings about dying.

Secrecy fuels the mutual pretence between parent and child and may deny the dying child knowledge of and participation in the process. At the same time, one must be respectful of how difficult it is for parents when the diagnosis is one of A.I.D.S. It is important also to respect the fact that child­ren have a right not to have information forced on them against their will.

SECRECY HELPING THE FAMILY

Most parents need help in telling their children about their illness. It would not be in the child’s best interest that the issue of disclosure would be forced, parti­cularly where the parent would not be able to support the child emotionally in the aftermath. Empowering parents to handle disclosure in a planned way is in the best interests of parents and children, where a parent feels able, with support, to tell the child and to cope with the child’s reaction.

Where a parent is having difficulty, permission might be given to Profess­ionals to ascertain what the child already knows and work from there. Truth can often be a lot less frightening to children than fantasy, and children can learn not to reveal information outside the home.

Parents meeting together is very beneficial. It is a forum where there is no secrecy around diagnosis. It normalises the situation of parents, relieves isolation, builds confidence, ideas and experience can be shared. Linking parents is very empowering in a situation where parents can feel a loss of control over other aspects of their lives.

CONCLUSION:

There are hopeful signs that the fears that give rise to much of the secrecy around H.I.V./A.I.D.S. are less founded. In Dublin, schools informed of the H.I.V. diagnosis of a pupil have universally been most positive in their response. Inner city communities, where many families have been personally touched by H.I.V./A.I.D.S. are displaying an increasing acceptance and support of people with the virus in their midst.

For those of us who work with children and parents with the virus, we must always be respectful of the parents in how they cope with this devas­tating disease. We must be mindful that while we walk the road of illness with the parents, we never walk in their shoes.