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Twenty
years into the HIV pandemic, one witnesses a growing concern over the
experiences of children. Till almost recently, this attention centered
around two groups of children - the infected children (those who are
HIV positive) and the affected children (those who have a seropositive
family member). The experiences of these children, and interventions
required to support them have been the subject of much research,
documentation, discussion, program planning and policy making.
Contemporaneously, as the understanding of the dynamics and
complexities of HIV/AIDS deepens, a more comprehensive view of
children’s interface with the pandemic emerges. There is
global affirmation that the shadow of the virus extends beyond infected
and affected children. All children of the world face a lifetime risk
of HIV, because of circumstances such as sexual exploitation and abuse,
or simply due to violation of their rights to information, education
and services (UNAIDS, 1999).
Literature from around the
globe underscores that HIV/AIDS changes the world for children.
Children whose parent (s) is/are seropositive experience numerous
changes in their lives. The onset of the symptomatic phase implies a
change in family roles and relationships and family economy. Household
(HH) resources dwindle due to medical expenses and parents’
inability to work. Parents may even be dismissed from work due to their
HIV status. Children’s nutrition, education, health and other
needs are compromised to save money. Children may have to leave school
and either earn or perform HH and/or care giving roles, if there are no
other adults in the family to support them. While all these
developments cause them psychological distress, this is compounded by
having to watch their parent(s) suffer over an extended period of time.
Reluctance on the part of
parents to disclose their diagnosis and its fatal nature, add to their
child’s confusion. If the HIV diagnosis in the family becomes
known in the community, children face prejudice and social exclusion.
Friends may come to visit less often and children may be harassed at or
denied access to school. Discrimination in accessing health care is
also common. That children born to positive mothers do not contract HIV
infection is often ignored. Thus, children are at greater risk of dying
of preventable diseases and infections because of the mistaken belief
that when they become ill it is due to AIDS and there is no point in
seeking medical help. Finally, the death of the parent constitutes a
very painful event. These various experiences precipitate emotional
turmoil in the child, which could leave long-term scars (Hunter
& Williamson, undated; UNAIDS, 1999; UNICEF, 1999; UNICEF,
2000)
Children who lose a parent
to AIDS are also at risk of losing their property rights, and rights to
inheritance, either because of laws that disenfranchise widows and/or
because of the acquisitiveness and deceit of the extended family and
other vested interests. The resulting poverty and isolation can create
a vicious circle, placing these children, especially the girls, at
greater risk of contracting HIV themselves (UNAIDS, 1999).
Since HIV may have spread
sexually between the parents, children could also be losing a second
parent, which worsens their predicament many times over. Following the
passing away of both the parents, it is usually the extended family,
especially in developing countries, that serves as the social security
system. Aunts, uncles and grandparents, who may have little income and
who may have counted on the support of the HIV infected relative, may
be the ones providing care and support. Fostering of orphans by
unrelated families, often by neighbors, is also common. Yet, these
families may lack resources for proper care, and hence orphans may be
the first to be denied education, adequate nutrition, health care, etc.
At the same time, there are also child-headed and children-alone
families. This is often following the death of grandparents, where
there is nobody else in the extended family willing to care for the
children. Such children, especially the older ones who are in-charge of
the household, generally drop out of school and find unskilled
employment (UNAIDS, 1999).
If a child in the family is
infected, parents may shield the knowledge from the well sibling,
though the latter are witness to their sibling growing inexplicably
weaker. Children who are aware of the illness in a sibling, may realise
that they are also losing one or both parents. Behavioural and
emotional disturbances in the well sibling are possible (King, 1993).
Positive children undergo
considerable physical suffering as the infection plays out its course.
HIV infection runs a faster course to AIDS and death in children as
compared to adults. Moreover, in developing countries, infected
children are at a greater risk of death for a variety of reasons. Many
common, inexpensive antibiotics and other medications are not
available. Health services are difficult to access. Drugs for rarer HIV
associated illnesses have not been included as part of essential drug
programmes that supply the world’s poorest hospitals and
clinics, and clinical guidelines for pediatric AIDS are less clear than
those available for adults. Poverty, which brings with it poor
nutrition, unhygienic living conditions and widespread infectious
diseases, also forms part of the problem. Moreover, since the
infections that positive children die of are similar to those that
commonly kill other children, it is sometimes difficult for health
workers in these countries, without access to HIV testing equipment, to
distinguish positive children from others. As a result, children with
HIV fail to receive the special care that they need (UNAIDS, 1999).
Older children in this group are bewildered by their recurrent illness
and progressive debilitation, especially as they compare themselves to
their healthy peers. Their confusion is enhanced because parents do not
wish to disclose the diagnosis and its implications to them.
The response to
children’s experiences with HIV/AIDS has been fragmented and
piecemeal, lagging behind those for adults. Quite often, this lacuna is
not due to lack of concern, but because of limited understanding of the
various issues involved. Addressing the children-HIV/AIDS interface
calls for a multi-pronged, holistic approach that operates
simultaneously at micro and macro levels.
India has some of the
largest numbers of HIV infected people in the world, second only to
South Africa. The official Indian estimate puts the figure at 3.5
million (Jain, 2000), though this is believed to be a gross
underestimate (Aegis, 2000). Within the country, Maharashtra has among
the highest number of AIDS cases (NACO, 2000), with microlevel studies
highlighting the growing incidence of seropositivity among married,
monogamous women, housewives and women attending ante-natal clinics
(Gangakhedkar, Bentley, Divekar, Gadkari, Mehendale, Shepherd,
Bollinger & Quinn, 1997; Gogate, 1998; Solomon, Kumaraswamy,
Ganesh & Amalraj, 1998). There is thus a strong basis for
inferring the high and increasing rate of pediatric HIV/AIDS cases
(infected children) and the scale of impact on children even if they
are seronegative (affected children). Moreover, India’s
sociocultural environment makes all children vulnerable to HIV
infection. There are numerous risk factors intricately linked to social
and cultural aspects of life that directly and indirectly facilitate
HIV transmission among children. These include migration, increasing
urbanization, poverty, illiteracy, displacement of people, subordinate
status of women, changing family patterns, growing consumerism,
uncensored media exposure, substance abuse, unsafe sexual practices,
irregularities in blood supply services, child abuse and child sexual
abuse. Inadequate access to health information and services affects the
ability of the population, especially those at risk, to protect
themselves. Primary prevention activities, aimed at controlling the
spread of HIV/AIDS, are totally inadequate in content, volume, and
orientation, and leave much to be desired in terms of effectiveness
(Aggrawal, & Indrayan, 1997; Godwin, 1997 & 1998; Joshi
& Rao, 1999; Ramasubban, 1998; Virani, 2000).
While Maharashtra State AIDS
Control Society (2001) puts the number of HIV cases for the age group 0
to 14 years for 1999-2000 at 515, and the number of AIDS cases for the
same age group as 139 from 1986 to 2000, experts in the field opine
that these figures represent underestimations, and in reality, there
are many, many more infected/affected/at-risk children, facing a
plethora of complicated problems that require urgent attention.
Despite the urgency of the
situation, Maharashtra not only lacks a policy on children in the
context of HIV/AIDS, but even the state of services available for this
group is dismal. Discussions with professionals working in the field
point out that government services are essentially in the area of
primary prevention through schools and colleges. These programmes are
largely conducted by medical personnel who are unable to relate to the
target group, because of the clinical terminology and pedagogy
employed. Further, these programmes begin only from Std 8, whereas
children have queries and require guidance from an earlier age. Also,
by this stage, many children have already dropped out of school.
Government hospitals provide clinical care and medical services, with
handful of them in Mumbai having special services for pregnant HIV
positive women and infected children, sometimes with AZT treatment.
Attempts to regulate blood banks, blood supply and related issues have
also been made by the central government, and a national blood policy
is on the cards.
The response from the
voluntary sector is a little more encouraging, but here too, the focus
is more on education and awareness rather than on support and
rehabilitation. NGO primary prevention endeavors in HIV/AIDS target
various groups of children (e.g., street children), as well as other
parties that influence the lives of children (e.g., commercial sex
workers). Support and rehabilitation are being provided by very few
NGOs and this too is largely in the form of institutional care for
children, with admission criteria in terms of age, gender, etc. Not
only do siblings get split up in the process but also this form of
intervention does not equip children to face the real world. Moreover,
when there is an age limit then once children have crossed a particular
age, placing them in another institution is difficult either because of
biases against HIV/AIDS or shortage of space. Institutions thus do not
offer a feasible solution since the demand far outweighs the supply.
Yet, at the present moment, they are the only option. There are just a
couple of NGOs in the state working towards community based
rehabilitation of children, with psychotherapeutic inputs for children
through individual, group and family counseling to help them resolve
their deep-seated emotional conflicts and prepare them for the future.
Indeed, a large number of organisations in the voluntary sector have
washed their hands off support and rehabilitation work in the context
of HIV/AIDS. Thus, it is not surprising to find institutions inquiring
about the serostatus of prospective entrants and refusing to admit
those who are positive as well as to observe them referring all such
cases to the few NGOs that continue to provide services in this area. A
few NGOs are also involved in awareness and education programmes in
schools, services for street children and special testing services for
children.
A tremendous amount of work
therefore needs to be done to serve the interests of children. The
formulation of a policy on the lines elucidated below serves as an
appropriate means to initiate the process.
Forthright commitment at the
highest political level is a vital first step in dealing effectively
with the AIDS crisis. Through visible and influential leadership,
societies can overcome the fear and stigma associated with HIV
infection. The need for resources must be underscored as, it is only by
investing in poor communities that the challenge of AIDS can be met,
since the virus disproportionately affects the poorest and most
disadvantaged in developing countries. While governments need to spend
more on these communities, they can also assist the latter by
allocating higher percentages of existing resources to basic social
services such as education, primary health care, nutrition and low cost
water and sanitation (UNICEF, 1999).
Since AIDS has wide ranging
effects on various areas of a country, coping with its impact requires
the co-operation of many sectors. It is imperative that policies,
technical support, information campaigns, and health and social
services be co-coordinated through a central and high-level body to
ensure accountability and continuity (UNICEF, 1999).
Specific to children,
education and empowerment of children, along with promotion of their
rights, are believed to be the key solution. Adhering to “The
rights of the child in the context of HIV/AIDS” as listed by
WHO/GPA (1995) leads the way. Changes in the existing social order, in
areas such as sub-ordination of women, exploitation of the lower income
groups, are also imperative, if a long-term and sustainable solution to
the children-HIV/AIDS interface is to be achieved. Interventions
therefore cannot remain only at the level of children, but must touch
all spheres of society.
Education and awareness
programmes targeting children at all levels and in all contexts are
indispensable. Focusing on reproduction, sexuality, HIV/AIDS,
lifestyles, substance abuse, life skills, legal rights and etc.
interventions should begin in schools at early stages, as many children
who drop out at mid-school level do not get covered at all.
Nonetheless, to be true to the cause of children, these programmes must
be taken beyond the school set-up to street children, children in
detention, refugee children and other such groups.
Children with positive
parents need special attention. As the infection progresses into the
symptomatic phase and alters various aspects of family life, children
notice the changes in their immediate contexts. Parents tend to
downplay these developments and refuse to answer children’s
questions, adding to their turmoil. Children need reassurance and
guidance to cope with their confusion and pain. In order to provide
this, parents must be sensitized to the need for, and trained to, deal
with the situation, whether or not they wish to disclose the true
nature of the problem.
As things worsen in the
household, children assume family roles and responsibilities. Losing
out on education, and skill training and development, and therefore
long-term self-reliance, is the primary outcome. If
children’s long term interests are to be taken care of, the
household economy and family care giving must be made the focus of
intervention, and assistance programmes in these areas devised.
The absence and/or lack of
willingness of other adults in the household or family to take on the
caregiver role results in children taking on the responsibility.
Guidance to child caregivers about the nature and course of the
infection, precautions, dealing with emergencies, and so on, is
significant in helping them to provide appropriate care and to perceive
the care receiver realistically. Children should also be coached as to
whom to contact in case of emergencies, or situations they are unable
to handle.
The provision of emotional
support to help children deal with parents’ progressive
debilitation, impending death, and actual passing away, is of utmost
importance in ensuring adjustment and adaptation. This help should
continue till the child has been able to make the transition.
The surviving spouse and
other adults in the household and family tend to hide the fact of
death, or shy away, from discussing it with the child, in the belief
that such topics will precipitate anxiety, fear, pain and confusion in
the latter. However, it is this failure to communicate on the topic
that causes more problems. Children should be informed (the content and
manner of which depends on their cognitive level) and helped through
this difficult phase. Parents and guardians should be guided to inform
children and support them.
Where children have to be
tested, then depending on the developmental stage of children,
explanations about testing and results of testing should be made. Since
children look at their world with curiosity and seek to attribute
meaning to their experiences, they have many questions regarding such
procedures. Answers suited to their cognitive level should be provided.
Informing seropositive
children of their status as they grow up has multiple benefits.
Children can understand the need for, and value of, maintaining
positive health; adopt precautions in their daily lives; and comprehend
the changes in their health status as the disease progresses. The need
for special attention during menstruation in the case of adolescent
girls; and for use of safer sex practices in cases of sexual activity;
would become clearer.
Emotional support and
counseling services to help them to come to terms with their diagnosis
and to work through the crisis should be developed. Medical services
appropriate for children need to be created in the context of HIV/AIDS.
These should include testing centres which are child-friendly and
practice painless blood taking, AZT programmes for neonates and
infants, and pediatric AIDS facilities with trained specialists.
A special group among
children are those who have lost both parents to the virus. Long term
rehabilitation for such children should be planned on the lines of care
by the extended family; foster care; adoption; group homes of orphans
supervised by carefully selected, paid caregiver(s) or responsible
community person(s); supported child-headed households; and finally,
orphanages which are the least preferred option. A familial context
provides the best environment for bringing up children, and if
adequately supported, they will be best able to provide the care that
children orphaned by AIDS require. Support should include improved
access to basic services such as health care, safe water and
sanitation, and education, as well as assistance with child care.
Policies need to be designed to prevent these families from sinking
into deep poverty. These may entail support for income generating
activities, small business co-operatives, vocational training and
micro-credit schemes. Keeping orphans in school is especially crucial
in breaking the poverty cycle. These families need emotional support
and encouragement that will help them deal with current problems and
plan for the future. This psychosocial support should be an essential
part of the home based care programme and communities should be trained
to provide it.
Orphanages are not the
answer. Expensive to build and maintain, they remove children from
natural settings and can have catastrophic consequences on
children’s development. Institutions also have a limited
capacity and when demand outweighs supply, children end up on the
street. Further, most institutions have restrictive criteria for entry
in terms of age, gender, serostatus, and so on, which generally results
in the separation of siblings. Children thereby completely lose out on
whatever family they have left. It is essential to address the
emotional needs of children devastated by their parents’
deaths. AIDS orphans have not only seen their parents die, but often
look after them over a long period. Their grief and depression are
often hidden and go unrecognised.
A review and reform of laws
and policies, as well as procedures thereof, dealing with children and
women must be undertaken so that children and widows at risk of losing
their inheritance and property rights, are protected. Mechanisms may
exist to maintain their interests, but they may be unaware of these
laws or have no channel to take advantage of them, making strong
advocacy in this area essential. Stern measures should be put in place
against those vested interests that bring harm to, and violate, the
rights of women and children in any way.
The review of adoption
laws, policies and procedures is also required. Issues such as whether
seropositive children can be adopted, and whether seropositive adults
especially discordant couples, or couples who have material and
financial resources can adopt, need to be sorted out. It is believed
that while children are an increasing part of the AIDS problem, they
are also a critical part of the solution (UNAIDS, 1999). This is so
because they can be educated and their behaviour modulated to ensure no
risk. Moreover, they can also be molded to break away from deep-rooted
social evils and inequalities, and bring about change in the social
order. Given this, there can be no doubt that a systematic and holistic
intervention would reap manifold benefits. But equally important is
involving the children themselves at planning and policy making levels.
Since such a step would provide an insider’s view of the
problem and a participatory approach to the solution, interventions
would be more realistic and hence more effective.
Integral to the improvement
of the children-HIV/AIDS situation is a focus on women. Breaking the
subordinate status of women in society and the various factors that
promote this inequality is the first step. Educating women about sexual
and reproductive health, life skills, HIV/AIDS and legal issues and
rights must proceed simultaneous with interventions to make men more
conscientious. Programmes for pregnant women must be initiated
especially in developing countries. Components of the programme include
counseling HIV positive women about the pros and cons of continuing a
pregnancy, and supporting their subsequent decision; provision of AZT
treatment either free or at subsidized, and therefore affordable,
costs; and facilitating decisions regarding breast-feeding in the case
of HIV positive mothers.
The coping of seropositive
parents contributes significantly to the well-being of their offspring.
Assisting parents to come to terms with their HIV status is an
important first step to initiating the process of helping them plan
ahead for their children. Parents should be motivated to disclose their
serostatus and its implications to their children, contingent on the
latter’s cognitive stage. This would help the child to
understand the changes in the household, following the onset of the
symptomatic stage. The relevance of adopting precautions would be
brought home to the child, particularly in cases where children are the
caregivers for parents. Concomitant with this, support for the child to
deal with the news of the diagnosis is imperative. A part of this would
involve preparing children for the death of parents. Work with parents
in families where both spouses are seropositive to plan for the future
of the children should necessarily encompass emphasis on the education
and training of the children to promote self reliance in the future;
and dealing with the issues of guardianship, adoption, and property.
Putting processes and papers in order during the lifetime of the
parents works to the advantage of children later on.
The universal application
of blood safety guidelines for blood banks, testing during organ
transplantation, and disinfections and sterilization procedures for
surgical, injection and intra-venous equipment, contributes to the
safety of both parents and children, particularly those suffering from
disorders requiring frequent transfusions or operative procedures.
Since HIV/AIDS is a
relatively recent phenomenon, and issues related to it emerge
constantly, training of personnel working with children in child
welfare agencies, health services, schools, etc., to understand and
deal with, and also anticipate, the various challenges, is required not
just to build up knowledge, but also skills and sensitivity. Programmes
for staff support become relevant because of the intense emotional
strain engendered by HIV related work.
In conclusion, it is
important to stress the need for research. Empirical evidence forms the
backbone of effective programme planning and policy formulation. There
is a need to monitor the impact of HIV/AIDS on children and families,
to estimate the number of orphans and examine their living conditions,
to explore the experiences of positive children and of siblings of
positive children, and finally, to evaluate interventions. While these
data would form the basis for further planning and intervention, they
could also be used for advocacy and for building awareness about the
social impact of AIDS and the rights of children.
• Aegis (2000).
NATAP at Durban - India satellite symposium. downloaded from aegis.com
on 9th July 2000
• Aggarwal, O.P., Sharma, A.K., & Indrayan, A. (1997).
HIV/AIDS research in India. New Delhi: NACO.
• Gangakhedkar, R.R., Bentley, M.E., Divekar, A.D., Gadkari,
D., Mehendale, S.M., Shepherd, M.E., Bollinger, R.C., & Quinn,
T.C. (1997). Spread of HIV infection in married monogamous women in
India. Journal of the American Medical Association, 278(23): 2090-2092.
• Godwin, P. (1997). Socio-economic implications of the
epidemic. New Delhi: UNDP.
• Godwin, P. (1998). The looming epidemic. New Delhi: Mosaic.
• Gogate, A. (1998). Emerging trends of HIV infection in
Mumbai megapolis: A cause for alarm. Paper presented at the 12th World
AIDS Conference, Geneva, 28 June - 3 July.
• Hunter, S., & Williamson, J. (undated). Children on
the brink. USAID.
• Jain, K. (2000). India draws flak for underplaying AIDS.
Times of India, Mumbai edition. 10th July, 2000.
• Joshi, P.L., & Rao, J.V.R.P. (1999). Changing
epidemiology of HIV/AIDS in India. AIDS Research and Review, 2 (1): 7-9.
• King, M. B. (1993). AIDS, HIV and mental health. Cambridge:
Cambridge University Press.
• Maharashtra State AIDS Control Society (2001). HIV/AIDS
Scenario. Mumbai: MSACS
• NACO (2000). HIV/AIDS: The Indian scenario. downloaded from
naco.nic.in on 16/12/2000
• Ramasubban, R. (1998). HIV/AIDS in India:Gulf between
rhetoric and reality. Economic and Political Weekly, 33(45):2865-2872.
• Solomon, S., Kumaraswamy, N., Ganesh, A.K., &
Amalraj, R.E. (1998). Prevalence and risk factors of HIV-1 and HIV-2
infection in urban and rural areas in Tamil Nadu, India. International
Journal of STD and AIDS, 9: 98-103.
• UNAIDS. (1999). Children and HIV/AIDS. Geneva: UNAIDS
• UNICEF. (1999). Children orphaned by AIDS. New York: UNICEF
• UNICEF. (2000). Securing a future: Mekong children and
HIV/AIDS. Bangkok: UNICEF East Asia and Pacific Regional Office
• Virani, P. (2000). Bitter chocolate: Child sexual abuse in
India. New Delhi: Penguin
• WHO/GPA (1995). The role of the committee on the rights of
the child and its impact on HIV/AIDS: Problems and prospects. Paper
presented at the conference on AIDS and child rights: The impact on the
Asia-Pacific region. Bangkok, 21-26 November, 1995
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