SEEKING NEVERLAND (Does hope need always be true?)
- Part 2 -

Czadanda Saint *

29th International AIDS Candlelight Memorial day by MNP+ in May 2012 :: Pix - Banti Phurailatpam

COMING OUT OF THE SHADOWS

HIV (Human Immunodeficiency Virus) attacks the cells of the immune system. Eventually, the virus impairs or destroys cells' functions, and the immune system progressively deteriorates. As a result, the body can no longer fight off infections and diseases. AIDS (Acquired Immune Deficiency Syndrome) generally refers to someone in the most advanced stages of HIV infection who has been diagnosed with twenty opportunistic infections or related cancers.

HIV/ AIDS is a disease that impacts different regions of the world in different ways, with the poorest countries usually getting hit the hardest. According to UNAIDS report, AIDS is the biggest single cause of death among children under 5 in the worst affected regions.

In India, from among the estimated 2.5 million people living with HIV/ AIDS, 70, 000 are children under 15 years old (UNAIDS report). And every year, around 33, 000 new-borns in India get HIV from their infected mothers, according National AIDS Control Organisation. And 50% of these children die within two years of birth while 80% of the children die within 5 years. Further, it can be added that though the number of AIDS orphans has not been adequately measured, some calculate that more than a million children under the age of 15 years in India have lost one or both parents to AIDS. (Martin, Max: Children shunned, placed at high HIV risk').

Mother-to-child transmission accounts for the majority of the children who are infected with HIV. If the woman has already HIV, then her baby may become infected during pregnancy or delivery. HIV may also transmit through breast milk. (AIDS Combat International, Care and Support for infected Children).

Besides, mother-to-child transmission, some children are exposed to HIV in medical setting: for instance, through needles that has not been sterilised or blood transfusions where the infected blood is used. For older children, sexual activity and drug use present a risk. And in some cases, children are exposed to HIV through sexual abuse and rape.

Once a child is infected with HIV, they face a high chance of illness and death, unless they are given proper treatment. Anti-retroviral treatment slows down the progress of HIV infection and allows the infected child to live much longer and healthier lives. Opportunistic infections such as pneumonia and tuberculosis also poses a serious risk to the health of children living with HIV/ AIDS.

Recognising that children are becoming increasingly affected and vulnerable to AIDS, the NACO, under the third phase of NACP, 2006-11, launched two initiatives aimed at children. They are-

1. Special paediatric fixed-dose combinations of anti-retroviral drugs to the infected children were made available.

2. Access to corpus of $ 14 million form the Global Fund for AIDS, TB and Malaria (GFATM) Round IV in 2007-08 has enabled the provisions of a package of services including medical care for opportunistic infections, psycho-social support, and supplementary education over a period of five years.

Further, NACO, in consultation with the Indian Academy of Paediatrics, formulated the Paediatric ART Guidelines, Formulations and Dosing Guide, Protocol for Diagnosis and Operational Rollout. And with the availability of FDCs for children with AIDS in India, their caregivers found that paediatric fixed-dose combination tablets are easier to take, are better tolerated and easier to administer compared to syrup formulations, modified adult doses, and paediatric single dose formulations (AIDS Combat International, Care and Support for infected Children).

Moreover, recognising that the effect of HIV/ AIDS is not limited to the children who have lost both their parents to the epidemic, 'children affected by HIV/ AIDS are recognised as those having a parent or sibling living with the virus, those having lost a parent or guardian or sibling to AIDS and those living in households fostering children orphaned by AIDS or those infected by the virus. Further, the notion of 'AIDS orphans' have been expanded to include children below the age of 18 years who have lost one or both the parents to HIV/ AIDS (AIDS Combat International, Care and Support for infected Children). So, it can be said that 'children living with HIV/ AIDS' includes those children who are not infected, but have lost either or both the parents.

These efforts are commendable. However, it can be pointed out that most of these efforts are focussed primarily on the preventive and the curative aspects. The third aspect of health care, i.e., rehabilitative, is hardly taken into account (AIDS Combat International, Care and Support for infected Children). It should be understood that the children living with HIV have not only realistic and material needs, but they have also social, emotional and psychological needs.

It is therefore important that emotional care is provided to the children affected by HIV, including those who have lost their parents. There are particular stages when these children require support: the time when they are first told about HIV/ AIDS and they first start to receive treatment, when they have to deal with discrimination and when they start facing problems adhering to drugs, or when they might contemplate suicide in the face of stigma and incurable affliction.

In this context, the definition of 'health' given by the WHO can be mentioned. Health is a state of complete physical, mental and social well-being and merely the absence of disease or infirmity. It implies more than an absence of illness. So, any programme or scheme of health care should aim at all three aspects- physical, mental and social well-being. And any scheme of health care for children living with HIV/ AIDS should cover all these three dimensions.

However, it can be said that services which offer psycho-social support to such children hardly exists. Further, it can be said that the children, who are not infected but are living with the constant presence of HIV/ AIDS, are completely out of the picture. Even they have to face the stigma, discrimination and have to grow up without the love, care and support of the parents. They are also very vulnerable to abuse and exploitation, and thus steps needs to be taken to reduce this vulnerability.

In all, it can be said that the health care measures taken up for the children living with HIV/ AIDS, are basically aimed at survival only. But they must be given a chance to come out of the shadows, and bask in the sunshine for however short duration it may be. Because stigma and discrimination will be there, unless a cure for AIDS is found. And until then, it is difficult to say whether there will be any change in this regard. So, the point should not be why they are facing discrimination. The point should be to teach them how to cope with the discrimination. By doing this, we can at least give them a chance to live life, for a change.

DOES HOPE NEED ALWAYS BE TRUE??

Children affected with HIV face a number of psychological problems. Many issues, including those unique to HIV as well as those associated with poverty and drug abuse; contribute to stress and poor coping abilities among the families dealing with HIV. The psychological problems include low self-esteem, emotional and behavioural problems, educational difficulties, stigma, depression, anxiety and feelings of abandonment.

So, basic AIDS Educational Programmes for all children and adolescents should be factual and explicit. Peer group programmes will have a positive impact on the adolescents. Support groups for the families, particularly, informal groups with facilitators, can help to diminish the sense of isolation and ostracism and enhance self-esteem. Further, children infected with HIV should not be excluded from school, day care centres, sports, foster care and adoption, and other group activities as long as their medical condition permits their participation (Care and Support for children living with HIV/ AIDS, Chapter 9, pp-99-100).

The goals of the HIV/ AIDS care of children includes, inter alia, normal growth and the development of the child, to support the child to use his maximum potential and abilities and to prevent physical and psychological consequences. But the main goal should be to provide a good quality of life, even if it is for a short period. This objective is very reasonable for the simple truth that most of their lives are going to get snuff out either at the threshold of adolescence or adulthood. And this is one truth, though hard to swallow, for which we cannot do much in the contemporary scenario.

Now, let us see some initiatives taken up in some African countries for providing psycho-social support to children living HIV/ AIDS.

In October 2002, a Programme to provide psycho-social support to children living HIV/ AIDS was initiated at the University Teaching Hospital, Lusaka, Zambia. A formative assessment to find out the psycho-social concerns of HIV infected children and their coping mechanism was made. It revealed that 35% worried about death, 35% worried about physical discomfort and the rest worried about getting better. The Programme provided the arena for the interaction between the children living with HIV/ AIDS and the other children as well as the society members. The Programme finally recommended 'acceptance and participation' is the key in providing psychological support to the children living with HIV/ AIDS.

A four year project was also initiated in Kenya and Uganda in 2000 named CCATH- Child Centred Approaches to HIV/ AIDS. The Project places children at the centre of communication about HIV/ AIDS in order to help them cope with the extremely difficult circumstances they face due to the effects of HIV and AIDS on their families and communities. The Project came to end in 2004. Some of the positive results were-

1. School authorities have reported that the formation of peer counselling clubs have succeeded in breaking down the culture of silence surrounding HIV and AIDS.

2. Children affected with HIV and AIDS are accepted by their friends and they play and share their fears and problems together. In some schools, children have set up an emergency fund for orphans and poor children, providing an avenue for those from more secure backgrounds to contribute some money or clothing to their friends.

3. A warm relationship exists now between the children. They play, eat and share things together, which is a sign of acceptance. It gives them a sense of belonging and improves their resilience.

4. Children have developed self-esteem, decision making skills and empathy. They have helped them in their day-to-day challenges.

5. The orphans now have a positive attitude towards the future, even in the absence of parents.

6. Many children now have the ambition of becoming doctor or a social worker to help people living with HIV/ AIDS (CCATH Manual, 2006).

From these two projects/ programmes, two main points can be highlighted-

1. It aims at providing community based care and support system for the children.

2. It not only covers children directly infected with HIV, but also those whose lives are directly affected by the virus.

Though AIDS is a disease taking pandemic form, it is not feasible to provide institutional care as even the families are infected. Community based system is more apt in such situation. Furthermore, it can be said that for providing psychosocial support, it can be best done through interaction with the community itself; otherwise there will hardly be any acceptance and participation.

Children, who are not infected with HIV themselves, but have lost their parents to HIV/ AIDS or have other siblings with HIV/ AIDS, also faces almost the same problems as the children who are HIV positive. And more than often, they have to deal with various psycho-social problems as well. So, any proposal or scheme for providing care and support will never be complete without taking them into consideration.

It can also be said that for such children, UNAIDS recommends to secure training necessary to ensure future livelihoods and efforts should be made to keep them in schools and to provide marketable skills.

In conclusion, it can be said that the underlying aim of any health care and support system for the children living with HIV/ AIDS, should be to instil hope in them. Like the CCATH and the Zambian projects demonstrate, hope was the real reason behind the success of those two programmes. Because, it gave to these children something to look forward to in their lives and adopt a positive optimistic attitude. And considering that many of the infected children will not be living beyond their childhood years, it is a very big achievement. So the question of whether hope need to be true or not is of very less significance now.

The light we see at the end of the tunnel may be of an oncoming train o of a radiant sunshine. We will never know until the time comes, or unless we go there. But the important thing is to know that there is light at the end of the tunnel. So, hope may be true, or it may just be a lie. But the point is there should be hope. And as long as there is hope, there is enough reason to continue on the journey....

Concluded...