Comments and feedback

Learning difficulties in children can result from many causes (genetic, birth trauma, prematurity, illnesses and accidents which effect the brain etc.) and sometimes there is no known cause. As more children with HIV have access to treatments and many more are getting older, there is evidence that as a group they have more developmental and learning problems than uninfected children. Those children who acquired HIV in pregnancy or around birth, when brain systems and processes are still developing appear to be particularly vulnerable. Those with early uncontrolled virus or who had poor nutrition or severe early illnesses or who were also premature appear to be at most risk of having later difficulties.

Developmental difficulties vary in severity, and some children have few or no problems. Common features in children who do have developmental difficulties include poor concentration and ability to keep going on a task and slow progress with school learning. Sometimes there are or have been speech or behaviour problems as well but this is not always the case. There are also a few children who have long-term movement difficulties or stiff legs but these are a small number and any such problems ill usually have been present from birth. Developmental problems have been noted in about a half of all the children who attend our clinic, with school learning the most common difficulty.

Sometimes children seem to cope quite well during the first years of school life but struggle more, as the learning gets more complicated or challenging. Other changes in their lives can add to or lessen an underlying weakness; these can be both changes in health or changes in experiences or support. This makes it difficult to always be sure how much of any difficulty is due to HIV and how much to other experiences. In your son’s case there appear to be several other factors in his early life experiences which are likely to have added to his learning difficulties e.g. early changes in his care (death of his mother?) little early schooling etc.

Keeping well during the growing years, including healthy eating, consistent care, normal experiences and opportunities helps to improve energy and wellbeing and enables a child to cope better with any problems or weaknesses. It is also known that continuing to ensure that the immune system stays healthy and that the level of virus remains low is the best way of making sure any developmental or learning difficulties do not get worse and prevent the likelihood of new problems arising because of the actions of HIV on the brain. Anti retroviral treatments are often key in helping the child not only stay healthy but also help prevent new problems arising. However they may not be able to take away completely any developmental difficulties which have arisen earlier in life.

In terms of providing the best support the actions are the same as for all developmental and learning problems, whatever their cause. Early recognition of problems is important so appropriate learning support can be provided at the earliest time. This enables the best chance for the child to be able to achieve their own potential and for self-esteem to be helped. It means that the child doesn’t feel they are to blame (e.g. not working hard enough) or frustrated (e.g. by not being able to keep up) and that more realistic goals suitable for future independence and employment can be made. Schools can vary in what they can provide and access for any child with a learning difficulty but discussing with them what is possible can be the first step. Often children who struggle with learning do best if provided with some small group learning or with access to someone in the classroom who can help keep them focussed on the task. And a good relationship between parents and school staff helps support the child. In the UK most children who have HIV and also some learning difficulties, are coping in mainstream with extra support rather than attending special schools or units. Other difficulties, such as behaviour problems or physical disabilities may need extra interventions or resources from other services but which may impact on school and learning.

It is not always clear that telling school staff about a child’s HIV diagnosis is helpful in getting more support and understanding of the child’s needs. Sometimes the consequences arising from misunderstanding and attitudes about an HIV diagnosis can be adverse and get in the way of them providing appropriate support for the child’s learning needs. However it is important that we don’t leave children with learning problems and HIV to struggle at school by themselves and without their needs being taken seriously. It is always helpful to talk to staff at your son’s medical centre about this and to make sure he is getting appropriate help at his school; they may have some useful suggestions from their experience with other families about how to negotiate a conversation with the school.

As the future for more children growing up with HIV is improving and changing there should be better information being produced about how to support and understand these children’s learning and emotional as well as physical needs. You are right there is a need for clearer and more up to date information about this for families and for schools.

Diane Melvin
Consultant Clinical Psychologist
Family HIV service
St Mary’s Hospital
Dec 10 2009

For information for schools, please see 'HIV in Schools' www.chiva.org.uk/health/publications/schools