By Dr.B.V.Kinikar & Prof.Vilas Bet
Niramaya Arogya Dham (NAD) is an NGO dedicated to improving the well-being of children living with HIV/AIDS by providing support for access to Government Healthcare Institutions to ensure adherence to ART, by providing nutritional, psychosocial and travel support.
The factors in spreading HIV/AIDS amongst children are the lack of supportive and compassionate care and treatment, and lack of protection of the rights of the Child. Children are facing many pressures as they are growing up.
Many children living with and affected by HIV and AIDS are deprived of treatment because everyone do not disclose their HIV status for reasons of stigma and discrimination. Disclosure of HIV status is traumatic for children. The presentation of HIV in children is different from adults. Children of two to three years of age repeatedly fall sick and if not treated and taken care are unable to survive beyond early childhood. The progression of AIDS syndrome is faster in children. If treated with ART, these children can live longer.
Stigma and discrimination is a traumatic factor in the lives of vulnerable children from a very young age. As a result, they have low sense of self -worth, high levels of anger resentment and deep mistrust of society. They face continued decimation — Health care, education and property rights are commonly denied or grudgingly offered. While families are largely caring and supportive but orphaned children who also have HIV/AIDS are usually abandoned, or handed over to institutions by relatives. Recreational needs of children living with HIV/AIDS are important but often overlooked, due to which such children tend to fall ill more often and experience other stress factors. Simple outings to parks or beaches, excursions and picnics, or visits to a temple, movie theatre or art exhibition, can improve in their health and well being. Nutritional supplementation will meet the increased energy demands of a child.
Due to the detrimental effects and strains the HIV virus inflicts on the health and well being of CLHAs, they have many additional needs. To manage and counter these effects, Niramaya Arogya Dham feels that CLHAs regularly visit an ART Center to avail of the existing free diagnostic and treatment services. They need Psycho-social support and counseling in an open and child -friendly atomsphere which will empower the child to lead a healthy life. Nutrition is an integral part of this programme, because it is essential that HIV positive children’s nutritional intake be boosted not only to compensate their loss due to illness and the side effects of ART, but also counter OI’s and maintain a better baseline health. Due to distance to the closest Government ART Center NAD would like to provide travel support also. This is essential since transportation cost can be a significant barrier accessing ART and other health services.
Infected children differ from infected adults in several ways
1. Dieses progress more rapidly in children.
2. Recurrent invasive bacterial in infections.
3. Opportunistic infections are more.
4. Prevalence of malfunction makes them more vulnerable
5. Malnutrition reduces the window period between HIV infection and full blown AIDS by four to ten times.
6. Most of the children do not know about the disease hence suffer more.
7. Children are totally dependent on the adults
8. Children cannot voice their demands
9. Children are unable to express and share property
10. They are ostracized, devalued, rejected scorned
11. They experience insult, attacks, shunned, psychological distress
Stigma means different things to different people. However the simple dictionary meaning is “the shame or discharge attached to something regarded as socially unacceptable “
It leads CHIA not being treated with dignity and equality.
1. While STIGMA is sometimes hard to pin down but if may be found in people’s attitude or beliefs.
2. DISCRIMINATION is little easier to describe. If is about actual behavior.
3. SOCIAL STIGMA is the severe disapproved of, or discontent with a person on the grounds of the characteristics that distinguish them from other members of the society.
4. STIGMA leads to DISCRIMINATION AND ultimately to SOCIAL EXCLUSTION
5. Some commonplace prejudices, and opinions have identified stereotypes and stigmas about HIV/AIDS namely
6. HIV/AIDS is widely perceived as an unalterable, degenerative, infective and total condition associated with socially undesirable behaviors, that deserves punishment
7. People living with HIV are a public health risk.
8. HIV is a death sentence
9. HIV infection is the end of the world
10. HIV infection is due to sins / wrong deeds in the previous life
11. HIV testing only transmits the disease.
12. SOCIAL EXCLUSION is a multi- dimensional process of progressive social rupture, detaching groups and individuals from social relations and institutions, preventing them from full participation in the normal activities of the society in which they live.
Four Key areas of discrimination regarding CLHA
1.. Health Care and Protection
2. Education of CLHA
3. Family Environment
4. Violation of human rights
Overall concerns and natural corollaries observed among the CLHA and their care takers are
1. Fear of ostracism
2. Tension
3. Denial /refection
4. Depression / lack of appetite
5. Sense of isolation / often seeks to silence
6. Helplessness/ sleeplessness
7. Death anxiety
8. Hostility towards the world / anger
And Dilemmas of the caretaker are intense conflict between the wish to reveal and the need to conceal the information about HIV /AIDS. Hence they shy away from often their dilemma is of disclosure to somebody who can support them practically and emotionally.
Counseling skills are inadequate in meeting the requirements of CLHA / caretaker etc. Counseling is necessary at all stages of the disease and treatment to meet the myriad of emotional and social problems and informational needs of them. Apart from providing correct information about the disease, discussion about coping strategic, disclosure to selected persons, integrating treatment and care in daily schedules can prepare the patients caretaker to deal.
Strengthening Community based organization and promoting family life education.
Majority of the CLHA are with their families, either with both, single parents or their caretaking, relation. And these settings, which are otherwise known for the care and protection are not delivering those services
because of the Stigma, misconceptions etc. So Social workers can intervene through community based organization with well designed family life education suitable for such families where there are CHA.
Promoting Human Rights CLHA
Reforming criminal laws
Strengthening anti- discrimination and other protective laws
Ensuring support services to educate people.
Promoting a supportive and enabling environment for children by addressing
Developing training modules fir various stakeholder
Documenting best practices in communities
Exploring different methods of advocacy
Strengthen the NGO’s, FBO’s and CBO’s working with CLHA provided with limited range of services, for a limited period of time in a specified geographic location in terms of sustainability.
As a social responsibility the corporate sector can help to generating systems for CLHA, and Challenging myths serotypes and discrimination. This will make life of CLHA healthy & Happy.
“A proper legislation is needed to reduce the discrimination against the children living with HIV/AIDS in all the areas, but particularly in the field of healthcare & education it is the high time for intervention immediately. An effective complaint mechanism should be setup in the healthcare system and Educational institution to ensure the protection of the rights of these children. It is not enough to raise the awareness about HIV/AIDS, it’s transmission routes etc. What is needed is an antidiscrimination policy support by law which ensures the protection law which ensures the protection of the rights of children living with HIV/AIDS”. – REFFIE GOMES (Integral Liberation Vol.9 No1, March 2005)
Issues about children having with HIV /AIDS are Under researched, addressed and acknowledged Hence it require immediate serious attention of the Corporate Sector and NGO officials to develop the jointly interventional strategies which will ensure that HIV cannot separate them from love, mercy, compassion and forgiveness.
Dr.B.V.Kinikar & Prof.Vilas Bet are the President of Niramaya Arogya Dham. Authors can be reached at 15-C, GoldFinc Peth, Solapur-413007. Mobile Number 09822378144. Email : bvkinikar@hotmail.com. www.nab.org.in
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