Caring for People Living With HIV/AIDS in India

[Guest guest]

A diagnosis of HIV infection is always profoundly shocking. Feeling of

fear, anger and despair and thoughts of suicide, are common in the hours

and weeks that follow.

*Where do people turn for comfort and guidance at such times?

*And who is most likely to care for them when they become too sick to

look after themselves?

It is important for everyone in the community to share the challenge for

caring for the people who are infected with HIV/AIDS. While we may hope

that doctors, nurses and hospitals will take care of PLWHA, it is actually

far better to look after and comfort them in their own homes and

communities. Everyone in their community needs to do their role in this

effort. Some may care and provide for PLWHA, other may provide kindness

and compassion for the families and friends of PLWHA. All these functions

are part of what we call " CARE " .

Stigma is one of the major challenges that PLWHA face. Stigma, silence,

discrimination and denial undermine prevention and care strategies and

increase the impact of the epidemic on an individual. Stigma is most

deeply felt when one has just received an HIV positive diagnosis. This

could be due to the emotional struggle within oneself i.e. fear,

shock, anger, depression, frustration, denial bargaining and asking oneself

" How will society look at me? "

There are many reasons - internal, external and spiritual

- why people feel stigmatised.

SELF-STIGMA is internal. It begins with an individual not seeing the

benefit of living and looking at themselves as unfortunate and

contemplating what other people are going to think about them.

" You are always conscious about your physical appearance and mental status

and always checking for signs that will alert others that you have HIV. "

Self-stigma is partly caused by fear of how other people will relate to

you - fearing denial, exclusion, loss of property, employment,

educational opportunities, eviction, and abandonment by friends.

The environment at a given time determines the level of stigma: where

there is a high level of awareness there is less stigma. An HIV-positive,

if determined, can be supported to overcome self-stigma. Disclosure is the

best tool to deal with stigma:

" Start by understanding how to control your emotions, understanding

people's feelings, then break the silence. When you do it yourself

people will not talk about you behind your back. "

*Who is the infected person?

*Why do we have to waste time waiting for people to go through the

process opening up when we are all affected based on the fact that

we have lost so many of own close family members?

SOCIAL STIGMA refers to social attitudes and norms that stigmatise

PLWHA. The individual often feels forced to do a

'self withdrawal' for fear of being judged, ostracized or shunned.

An example is the social attitude that 'AIDS is for prostitutes,

for people who have nothing to offer.'

In order to support PLWHA to cope and live positively, it is

important to understand and address these issues both at personal and

social level. Stigma in some countries where insurance policies exist.

People fear to open up as they risk losing the insurance benefits.

" The moment you mention you have HIV - you miss the benefits. "

Experience has shown in cases where political/ democratic environment is

not conducive stigma is escalated among even those who would have accepted

to come out in the open. On the other hand when the HOLISTIC environment

is conducive the level of stigma gradually reduces. Hence enabling not only

PLWHA to cope but the entire society and come to terms with the infection.

ROLE PLAYED BY PLWHA IN STIGMA REDUCTION should be underscored.

However we must be reminded that we really need to show HIV/AIDS

wearing a " professional and skilled face " .

This effort is being hindered by the fact that there are no policies to

safeguard discrimination of PLWHA in employment. However, a successful

example was cited of " Giving HIV a professional face, "

Of the alliance of HIV-positive professionals in Nigeria.

FAMILY STIGMA: Family members making them understand and appreciate the

dilemma you are in, as many of them may relate your situation to your past

behaviour. Some of them may relate past deviation from expected behaviour in

society to your current predicament. The situation is worse when it comes

to your immediate and close family members like your children whose

understanding, depending on age, is limited to the obvious facts of life.

These difficulties heighten the fear of opening up to one's family and

impede the individual's ability to cope with HIV.

AIDS and other issues in the family, enabled parents to cope with

difficulties of disclosure at family level and to reveal HIV status

to children, and to increase support and co-operation from children.

Following are some Issues which are very important for caring of PLWHA:

- What is the role of disclosure in fighting stigma?

- What are the effects of HIV-related stigma on individual, family,

community, and children?

- What are the predisposing factors to self-stigma and are they uniform or

do they vary from community to community?

The following chart represents various caring agencies for the PLWHA

in the community.

CARING AGENCIES

A) Informal Agencies

a) Home Based Care

Self Help Groups

c) Religious Groups

Formal Agencies

a) Health Sector

Hospice Care

c) Government and NGOs Support

A) Informal Agencies

a) Home Based Care: - PLWHA requires long and continues treatment.

Hospital care in such condition is not feasible. So home-based care is

absolutely necessary for care of such cases. The home-based care has

some specific objectives.

1) Formation of indispensable terms that will train the family

members who will provide social support and teach prevention.

They will develop referral networking linking health services with NGOs.

2) Clinical Management: A proper diagnosis and treatment.

· Follow Up

· Nursing Care

· Medical Care

· Infection Control Practices

· Counselling has to be done on HIV testing to reduce stress and anxiety

and plan for the future. The home care will include training of the

family members; provide moral support and also linkage to social welfare.

Self-help groups: - Another key element of the community

mobilization strategy is the formation of self-help groups of PLWHA.

The self-help group can provide a context for PLWHA, to share local

knowledge and support each other, to solve problems and look after

themselves in a better way. It will help to respond to a shortage of

adequate health services in the community.

It will help encourage people to use their own resources to meet the

needs that may not be met by existing health and social services

provided by the Govt. or the NGO's. Self-help groups can be formed as

clubs also and can serve many purposes for e.g.: -

1. Health services access: - The club may be a good way for local public

health centre to provide services to PLWHA. These services could be

offered at convenient frequency (as twice a month) and could consist of

physical check up in addition to counselling on care and health diet.

2. Social and economic support: - The main reason that why a HIV

infected/AIDS patient shall join this kind of club is to seek out

economic support when they are unable to work due to their illness.

Through the self-help group, they may be able to get vocational training

appropriate to their health status for e.g. knitting, handicrafts,

stitching etc. The clubs can raise fund to provide personal health

insurance for patients in the community, and can obtain any available

free treatment from public health offices and hospitals and also seek

financial assistance from both public and private sectors.

3. Recreational activities: - The club can go a long way in providing

release to the stressed PLWHA by organizing various activities like music

and dance concerts, games, picnics, yoga and meditation classes etc.

c) Religious groups: - To cope with crisis PLWHA can seek support and

coordinate the effort of various religious organizations. It may be very

helpful if religious persons, such as priests, can conduct activities in

the club related to spiritual care. They can also provide counselling and

visits those patients who are having family problems. Such individual or

groups can provide moral support; encourage the family members and

community to feel more at ease and help with the care and support of

PLWHA. Such groups need not include the word " AIDS " , they can be called

" HELPING HANDS " project - not only to avoid reference to the disease

itself, but also more importantly to emphasis the healthy, positive

vision of this compassionate and helping initiative. This will allow PLWHA

to meet others who are suffering from similar kinds of difficulties,

discuss and share experiences and talk about their problems and failures.

Formal Agencies: -

a) Health Sector: - Providing anonymous testing and counselling is an

important way for the health sector to reach out to those people in

the community who may be infected with HIV. Drop-in clinics can offer

clients, counselling and general information on AIDS/STIs and general

health. The clients can be helped to understand more about HIV/AIDS and

learn how to modify their risk behaviour so that they avoid contracting

disease and prevent the spread of HIV/AIDS. The clinic staffs needs to

provide counselling, comfort and guidance to HIV/AIDS patients and their

families during the crisis. In addition the health centre or the clinic

may be restricted to providing same medicine to treat symptoms, diarrhoea,

headache, fever etc. If need be the clinics can refer PLWHA to Govt.

Hospitals for specialized services. Barriers such as lack of

food, clean water, adequately trained health workers and infrastructure,

and the stigma and discrimination which surrounds HIV/AIDS, all hinder

poor people's access to care and treatment. While working towards

solving these problems, the priority must be to prolong life and improve

its quality by whatever means are immediately available, accessible,

affordable and safe. Health care systems and home care need to be

strengthened as a basis for improving access. Existing tuberculosis(TB)

services using Directly Observed Treatments, Short course (DOTS) can be

an entry point for the provision of care to PLWHA.

Hospice Care: - In this system patients are provided care and support

giving an ideal situation for the patients for living a life free from

discrimination and hatred. For providing care and support to the AIDS

patients. The Missionary of Charity has already opened a centre.

Hospice care can serve as a place to counter the negative responses.

It can serve as an intermediary between hospital, home and community

based care system. It can be managed as part of an integrated cost

effective care system. As more HIV infected persons develop into

full-blown AIDS, there will be a need to develop more hospices and

community based care centres.

c) Govt. and NGOs Support: - AIDS is a chronic disease lasting months or

years to provide social, economic and emotional support to PLWHA. It is

high time that Govt. and other Organizations come forward and provide

healthy environment. Govt. policies and laws can create a supportive

environment for the care of PLWHA.

· State should ensure monitoring and enforcement mechanism to guarantee

HIV/AIDS related human rights including those of PLWHA, their families

and communities.

· State should promote creative education, training and media programmed

explicitly designed to change attitudes of discrimination and

stigmatisation associated with HIV/AIDS to understanding and acceptance.

· State should implement and support legal support services that will

educate PLWHA about their rights, provide free legal service to enforce

those rights, develop expertise on HIV/AIDS related legal issues

and utilize means of protection in addition to the court such as Human

Rights Commission etc.

· State should, in collaboration with NGOs, promote a supportive and

enabling environment for women, children and other vulnerable groups by

addressing underline prejudices and inequalities through community

dialogue especially designed social and health services and

support to community groups.

· The lives of PLWHA can be greatly improved if they can achieve open

access to health care services with low cost. In Thailand for example,

the government has developed and provided a health insurance card which

can be purchased for an affordable sum, and which covers care

from government's health care establishments, for up to five family

members - for one year. The health insurance card holder than receives

health treatment free of charge. Possessing the card means a PLWHA does

not have to hold a referral document in order to receive treatment from

community or government hospital.

· State and NGOs should encourage educational institutions like primary

and secondary schools, colleges, universities, adult and continuing

education as well as trade unions and work places to compassion and

indiscrimination to PLWHA.

· State and NGOs should ensure that PLWHA should be brought under the

disability Act of India. They should ensure that PLWHA should be the

beneficiaries for the concession given to the people in the

category of disable.

· The government should ensure that suffering from HIV/AIDS should not

became a tool for an employer to throw PLWHA out of the job as HIV/AIDS

is not a contagious disease. At times it has been threw out of the job on

the ground of their health status. Government should ensure employment

security for workers living with HIV/AIDS until they are no longer able to

work, including reasonable alternative working arrangement.

· Government in collaboration with NGOs should promote vocational courses

and training programme, easy loans for self-employment for PLWHA and their

family members. They should provide financial assistance to PLWHA on

priority bases.

· Orphanages for children of PLWHA should be opened so that they are

relieved that their children will be look after once they are no more, these

orphanages should no be labelled to save the children from discrimination or

the state should increase the capacity of the existing orphanages as this

will provide the children's confidentiality. Support is most urgent for

children in very poor situations who have lost one or both parents to HIV.

Orphaned children, especially if they are unsupported, are likely to be

in vulnerable situations and therefore also at increased risk of becoming

infected with HIV. Children who are not orphans are affected by the

increasing burden on adoptive families. All children are affected by the

impact of the epidemic on the teaching and caring professions,

the loss of those close to them and the grief this entails, and the loss

of transfer of knowledge and community values from one generation to the

next.

Unsupported girl children are particularly vulnerable to exploitation and

sexual abuse. All children should be securely cared for within families and

communities. Institutional care is a last resort. Community resources

are overburdened, and support is essential if the psycho-social needs of

affected children are to be addressed. For the most vulnerable children,

those whose parents are infected with HIV, care and support needs to start

before children are orphaned. They need help if they are caring for their

parents and uninterrupted support when a parent dies. Support for children

must be an integral part of programmes reaching parents with HIV/AIDS.

Care for orphaned children, whatever the cause of their parents' death,

should be streamlined to avoid creating additional stigma and

discrimination.

Children infected by HIV are a minority of affected children but have

special needs that are not currently being met. Care and support for

such children should urgently be integrated into existing support

systems for PLWHA.

· Policies and processes to make effective drugs available to people in

society at an affordable price must be developed urgently. This effort

needs unique commitment from governments, multilateral agencies and the

pharmaceutical industry, and the participation of communities and NGOs.

· Reduced prices are an essential element of increasing access to drugs,

but this alone will not ensure access to the best treatments for the

poorest people. Improved and properly financed delivery systems

are essential and can only be achieved through partnerships between

communities, NGOs, the private sector, and governmental organizations.

·Antiretroviral drugs (ARVs) are currently the most effective long-term

treatment for HIV infection. But other drugs including antibiotics,

antifungals and treatment for TB improve both quality and length

of life PLWHA. Work to increase the accessibility and affordability of

drugs such as these should not be compromised by efforts to provide ARVs.

In India government is providing support for opportunistic

Infections but how many people are aware about this support.

· Ensure that every country has at least one care and support unit as a

reference centre and for nationwide training in diagnostics, treatment

(including ARVs), standards of care and monitoring of HIV and HIV-related

diseases for doctors and Para medical professionals in government and

private health systems.

· Establish an international HIV/AIDS drug and commodity procurement fund

at global level that could leverage the buying power of developing countries

and donors. Resources demarcated for the procurement of HIV/AIDS drugs,

related commodities and the development of new products such as vaccines

must include a strategy to strengthen related health systems infrastructure

including necessary personnel training.

· Continue to work with both the research-based and generic pharmaceutical

industries to dramatically lower the prices of all relevant drugs and

diagnostics, while maintaining incentives for investment in

research and development.

·Urgent support is needed for families and communities that include

children affected by HIV/AIDS. Call for urgent attention to the needs

of all children in affected countries and particularly for those

made most vulnerable by the epidemic. Actively support community

mobilisation efforts to address the needs of affected children and

actively develop polices to ensure resources to enable all affected

children to have full access to education, health and other essential

services.

·Strengthen existing health, education and welfare services to cope with

the additional problems experienced by unsupported PLWHA and design new

services in such a way that they decrease stigma and discrimination.

·Openly and vehemently challenge discriminatory attitudes and enact laws

and policies that reduce the vulnerability of PLWHA and enforce their

rights/duties as human beings.

· Encourage the participation of PLWHA in the development of services and

programmes for them.

· Prevention, care, rehabilitation and impact mitigation initiatives must

all be scaled up and better integrated. While prevention must be the

mainstay of our global response, care and impact alleviation are both

essential in and of themselves and are crucial for effective prevention.

· Providing care and support to PLWHA in the society can increase condom

use, decrease risk behaviour and increase disclosure of HIV status to

partners, even if prevention promotion is not included in the care

programmed. All these positive results can be further increased by

explicitly addressing prevention alongside care.

· Providing care and support to PLWHA also increases planning and

provision for children affected by HIV/AIDS, increases children's

understanding of HIV/AIDS, and increases the number of orphans who

are immediately placed in a loving and supportive environment after

their parents die.

· Action to alleviate the impact of HIV/AIDS, such as caring for orphans

and vulnerable children, in turn contributes to both prevention and care.

One of the most effective methods to mobilize community action on all

aspects of HIV/AIDS is to focus on the needs of affected children.

·Involving PLWHA in prevention campaigns both increases safe behaviour by

the PLWHA themselves and more effectively catalyses safe behaviour among

people who are not infected.

Ultimately, the focus of prevention, care, rehabilitation and impact

mitigation work is mostly with individuals, families

and their communities. Community mobilization and support is thus central

to effective responses to HIV/AIDS and to effective linkages among these

issues. Increasingly support the development and implementation of

integrated prevention, care and impact alleviation efforts delivered

at the community level. Call for special programmed and policy efforts

focused on and involving children orphaned by AIDS, who need ongoing

love and support until their adult years, may themselves need HIV/AIDS

care, or otherwise may be particularly vulnerable to HIV infection.

With great hopes from the GLOBAL COMMUNITY,

We remain your comrade in arms against this menace of AIDS

Ms. Rekha Gupta, Ms. Renu Sharma & Dr. Avnish Jolly.