Print
this page
Email
this page Newsletters - The Impact of HIV/AIDS on Children
Scotland
Waverley Care
Waverley Care has been working in the field of HIV/AIDS since 1989 and because of the nature of HIV infections in Scotland, especially in the early days when many intra-venous drug injectors were diagnosed, there has always been a strong emphasis on working with children and the “affected family”. (By “affected” we mean that there is a family member, usually a parent, who is HIV-positive.) We are fortunate that good ante-natal care and screening means that there are very few babies born in Scotland who are HIV-positive in their own right. This has continued as the profile of the epidemic in Scotland has shifted, with increasing numbers of people from sub-Saharan Africa being diagnosed, many of whom have children.
Waverley Care has also consistently used a holistic approach and there has always been a strong emphasis on the spiritual care of those with whom we work. Since its earliest days, the organisation has employed a chaplain who has always happened to come from an Episcopal background.
Speaking to children affected by HIV, shows that children and young people have very clear ideas about what would make lives better for themselves and, indirectly, their parents and families. They include:
- the opportunity to talk about parental HIV openly
- more information about HIV illness
- better support and understanding in school
- better relationships with social workers and health professionals
- more activities where they can meet with other children and young people in similar circumstances.[1]
HIV is still a relatively new phenomenon and we discover new information about it on a monthly basis. Whilst children do not need to be burdened by the detail of changes, they do want to know the basic facts in order to make sense of what is happening to their family member. Waverley Care is fortunate that our Children and Families Worker has been with the organisation since 1991 and is a trusted friend to the many children who over the last 16 years have come to her.
Waverley Care’s experience is that it is all too easy for the needs of HIV-affected children to be over-looked or to get lost within statutory services where they are not a priority for support. Too often the support comes when the child is beginning to miss school or misbehave at school. Working with affected children at an early stage can help them and their parents come to terms with HIV in the family and move on to deal with all the other issues that face families in everyday life.
Positive Help
Positive Help offers practical help to people in Edinburgh living with HIV. It was established in 1989, originally through the Scottish Episcopal Church, in direct response to HIV-positive people expressing a need for help with day-to-day living, and we continue to respond to that same need. By listening to what people tell us and responding to requests in an uncritical, non-judgmental way (with absolute clarity about the boundaries of our role), we are able to enhance the well-being of service users and their ability to manage better within their homes and communities; and to support a vulnerable, disenfranchised, often unpopular, population to gain control, dignity and independence within their lives. While public perception is that HIV is no longer a problem in the UK, especially with treatments being available, high numbers of new diagnoses
continue, and care and support becomes increasingly complex. Positive Help currently has almost 1000 service users.
Children affected by HIV are difficult to support, mainly because stigma and fear of discrimination prevents both the children and the parents from asking for help; while ill-health, lifestyle and social disadvantage often make it hard for parents to keep up with the needs of a young, well family. Despite treatment now being available, many parents are still not consistently well and, sadly, the external social circumstances of these families have not changed significantly. Many children live with one parent, often in complex family units. Many of the service users who contracted the virus through injecting drugs in the 1980s now have second families, bringing some young children to our service. However, loss and anticipated loss remain ever present in their lives. This is especially so now with increasing numbers of parents co- infected with Hepatitis C, also contracted when they were injecting drugs, becoming very ill with advanced liver disease. This means long periods of ill-health and hospitalisation for the parents and therefore separation from their children. There are also renewed problems with childcare and foster care, with a fear of separation for the young people and the parents, not just about the children being taken away, but also about siblings being separated and the fear that this may become permanent. Current and problematic drug use had decreased for most of these young people but some parents are using drugs again to deal with the fear and stress of becoming ill and the possibility of dying.
Poverty, deprivation, social exclusion, discrimination, harassment, bullying and threats of violence are commonplace. The majority of children carry the burden of secrecy about HIV in the family. Many develop inappropriate roles within the family to try to compensate for parental illness. The Positive Help volunteer befriender gives safe, supported time out for the child to talk, to be listened to and to feel valued. Uniformly, these children express a need to “belong” and to be “ordinary”. Activities such as teaching them to swim and taking them to the cinema, enable them to build the confidence and skills that can help them join in. This in turn supports social integration and acceptance by their peers. It is known that the social and behavioural difficulties which manifest themselves within this group of children are greatly reduced by their involvement with Positive Help. Many families use the project where they are not in touch with other services or where others have failed to sustain contact. The impact on the welfare of the entire family is immense, and can help to keep families together. Our main aim is to try to prevent a further generation of damaged adults displaced within society, with complex mental health needs and dependency problems, and we work to give the children a sense of purpose, possibility and fun.
Our longest standing “befriending” relationship – 13 years –- finally came to an end this year, with the now grown-up young woman leaving school and starting out on her adult life. The acknowledgement between the “befriender” and the young woman of the value of their time together was immensely moving but illustrated that if the work has boundaries and is supported, an ending can happen that is a positive and empowering moment for both young person and volunteer. When asked what it was that was most important in their time together, this young girl said that HIV dominated every aspect of her life, but in the “befriender” she had someone who knew about HIV in her family but allowed her the freedom simply to forget about it and go out and have fun and talk. “She made me laugh” was her final remark.
1. “Listening to children and young people whose parent or carer is HIV positive”, Children in Scotland 2002.
Top
