THE BLOG

When Treatment Is Not Enough: What Can HIV Teach Us About the Importance of Treating Mind and Body in the Quest of Support Children With Healthcare Needs?

04/03/2016 12:23 GMT | Updated 02/03/2017 10:12 GMT

Rather a lot, as it happens...

At One to One Children's Fund we have always recognised that for children to survive and thrive we must care for minds as well as bodies. Even going back to 2003 when we managed to prove to the South African Government that Anti-Retrovirals could save the lives of hundreds and thousands of babies, we knew that we would only be successful if we addressed the counselling needs of the children and their families. But it is only in recent years that the full impact of HIV on children's mental health has come to light. A need which we have been able to address with our innovative approaches to peer support.

The sad fact is that, whether they are reeling from a recent diagnosis or have grown up always knowing their status, children and adolescents with HIV are very vulnerable to depression. Of course they are! And the reasons for this depression are many and varied:

1. Physical health and emotional well-being are inextricably linked. When was the last time you had a flu bug that kept you in bed for a week? How did you feel at the end of that week? More often than not it's the medication rather than the HIV causing the symptoms but as any woman who has suffered morning sickness will tell you, persistent nausea can sap your mental and physical resources.

2. No-one likes to be reminded of their mortality. Despite the great advances in HIV treatment, which mean that most of those infected can lead perfectly normal lives, many fear that HIV is still a death sentence.

3. There is still a huge stigma around HIV. In many parts of Africa, HIV is shrouded in fear and ignorance. Those who are HIV-positive can suffer terrible discrimination and prejudice and many are scared to tell even their closest friends about their status.

4. Treatment regimens can be very complicated and time-consuming - and they are for life. The drugs can also have some uncomfortable side effects. There is a huge temptation for older children to simply stop taking their treatment once they become more independent from their parents, which can have catastrophic consequences.

5. Many children have lost parents to HIV and are still grieving. These children are often raised by grandparents who struggle to meet the needs of young and energetic minds.

6. When children become adults they want to do adult things. They want to enjoy a sexual relationship and eventually have children - and yet here is an illness that makes both of those things extremely complicated.

The end result is that many children fear they will die young, unloved and all alone. Some feel their lives are not worth living and give up treatment as a slow form of suicide.

Parents are obviously keen to find a way to support their children but many lack the understanding and tools needed to help their child understand what growing up with HIV will mean.

Similarly, under-resourced and over-burdened health teams are unable to offer psychosocial support or youth-friendly services to young people living with HIV. Without this support, the success of HIV treatment is far from assured. Whilst for most HIV-affected populations, mortality is decreasing, the number of adolescents dying of HIV-related illnesses has tripled since 2000 (UNICEF) and globally AIDS is the second biggest killer of young people.

The good news is that One to One Children's Fund have clearly demonstrated that with the right care and support we can help children and young people to overcome their challenges and benefit fully from the life-saving treatment which is now much more accessible.

At One to One Children's Fund our REACH project employs young adults with HIV to act as peer supporters to other teens navigating adolescence and HIV. It is fantastic hearing from children who were once living in despair, but who have now discovered that life is worth living. It is even better when these young people go on to help others like themselves. That support is multidimensional and includes:

1. Practical and moral support for complicated treatment regimes, particularly focusing on helping children and young (and their parents) to understand the importance of life-long compliance.

2. Providing role models in the community who are brave enough to share their status and break down the stigma associated with it.

3. Providing reassurances around the possibility of a full and rewarding life for children with HIV.

4. Being someone to talk to about how they feel about having HIV.

The impact of all this is lives saved and lives transformed. As we have shown, treatment alone is clearly not enough; emotional support is vital. And this central lesson, that children's mental health doesn't take care of itself, is bigger than just HIV. High quality emotional support for children needs to be available to all and as routine as vaccinations. We simply cannot expect children to cope alone.