National NGOs Network Group Against AIDS – Nepal

NANGAN

“The oldest NGOs networking group against AIDS in Nepal”

E-bulletin: Issue No. 1, March 2006

Editorial

Dear Members,

We are happy to introduce NANGAN’s third e-bulletin which focuses on the issue of care and support.

A number of local and international organizations, the Government of Nepal and donors have developed well targeted, prevention programs reaching difficult to access populations with harm reduction services. However, less momentum has existed in the area of HIV treatment, care and support, despite the fact that 60,000+ people are estimated to be living with HIV/AIDS in Nepal.

Only a handful of Nepalis with HIV have access to antiretroviral therapy through the public or private health care system, and simple medicines to prevent infections among people living with HIV/AIDS is infrequently used by health care workers despite its affordability.

NANGAN is working for its member organisations involved in the area of prevention, care, rehabilitation, support and promotion of rights through networking and advocacy.

We encourage you to send your comments regarding this bulletin to mailto:e-bulletin@jagaranmedia.org.np.

Thank you
Hari Prasad Awasthi, President NANGAN

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What is care and support?

Care and support means offering medical help, psychosocial support, practical advice and general kindness to people in need. It means listening to their feelings and responding to their needs as much as possible. With HIV/AIDS, this includes family members, particularly children, as well as caretakers such as elderly parents.

The most appropriate place for care and support is in the home, but other places such as the temple, health centre, school and other community organizations are also important.

The aim of care and support is to improve the quality of life of PLWHA, their families and the communities. It cannot be separated from prevention.

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We care, do you?

Try to imagine how you would feel if you suddenly found out you have HIV. Treat others with HIV just as you would like to be treated. Anyone with HIV or AIDS needs love, compassion, help, care, support, treatment and preventive services just like any other person who is sick or likely to become sick. No one deserves to get HIV and no one deserves to be treated poorly just because he or she has it.

Anonymous

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Nepal Statistics April 2006

(NCASC, April 2006)

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HIV-AIDS Care and Support

Until recently, most HIV/AIDS programs in non-industrialized countries neglected care and support for people living with HIV, their families, and communities.  Many governments and donor agencies supporting HIV/AIDS programs chose to focus solely on prevention because they believed that preventing HIV infection would obviate the need for care and support and because of the high costs.

But innovative community-based projects early in the AIDS pandemic responded to care and support needs by linking with medical and social support services to provide medical treatment for opportunistic infections, counselling support, palliative care, and support for dependents and orphans.

These experiences showed that improving access to HIV/AIDS care and support services helps destigmatize HIV, improves demand for voluntary counselling and HIV testing services, and allows for early management and prevention of infectious diseases (such as TB) and sexually transmitted infections (STIs), among both HIV-positive and -negative people. Providing these services likewise creates opportunities for HIV prevention.  For these reasons, national and local strategic plans in many countries increasingly include synergistic programming that links prevention with care and support.

Each community, region, and country needs to strengthen some level of HIV care and support.  But difficult choices have to be made in each setting about the level of care and support that is feasible and affordable in the short term and what can be attained in the future.  Strategies and national standards are needed to guide both the allocation of resources and the implementation of HIV care and support activities at various levels.  Strengthening community, regional, and national capacity to implement comprehensive care and support programs will make it possible to demonstrate how cost-effective approaches can be replicated, scaled up, and sustained.

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Comprehensive HIV/AIDS care and support includes:

For more information see: http://www.FHI.org/en/Topics/HIV-AIDS+Care+and+Support.htm

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Stigma preventing care and support

Stigma and discrimination are barriers to providing care and support. Conversely, care and support can reduce stigma and discrimination.

Stigma is based on a person’s perception and attitude. With HIV/AIDS this is often based on fear and inaccurate information.

Discrimination is what happens when someone acts unfairly towards another, based upon stigma.

Self-stigma is common among people living with HIV/AIDS, preventing PLWHA from seeking care and support.

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Who cares?

Who cares? This is not a rhetorical question for the majority of poor people affected by HIV and AIDS. When there is a sick or dying person in the house, someone quite literally has to care, whether out of love, duty, or simply a lack of options. Indeed, research has indicated that up to 90 percent of illness care is provided in the home. Although the role that men and boys are playing as providers of care in the context of the HIV/AIDS epidemic has been poorly documented and inadequately understood, it is generally recognized that women and girls are the principal caregivers in the vast majority of homes and bear the greatest degree of responsibility for the psychosocial and physical care of family and community members a responsibility with substantially greater weight in homes affected by HIV and AIDS.  These largely unpaid activities sustain families, allow children to go to school, and free the time of other household members to generate income.

Activities undertaken by women often include:

Definition of continuum of care

The continuum of care and support for PLHA begins with their first inquiry and carries on to meet as many of their needs as possible, finishing up with care and support to their family after death. The continuum is defined not only by the range of services it encompasses – counselling and information, clinical care and treatment, home care and family counselling – but also by the common quality that links together and strengthens service delivery. This quality comes from the attitudes and values of the carers and from the dignity and trust of the patients. The individual needs of patients and their families shape service delivery. As a result, the energy of caring is equally shared among care-givers, people with HIV, and their families and communities. Patients, family members, doctors, counsellors, nurses, nutritionists, educators, laboratory technicians, administrators and support staff can all contribute to care and support. Through contributing they are changed and the care and support they give to others is made more effective. The effects of HIV infection are different for each patient and each family, the continuum provides a supportive framework, in which these different needs can be recognised and addressed as they arise.

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Community Based Care and support

HIV/AIDS is increasingly being viewed not as a fatal and acute disease, but as a chronic disease that, while it cannot be cured, can be managed. The progression from HIV infection to AIDS varies considerably among individuals. On average, the time between HIV infection and AIDS (referred to as the incubation period) is about 10 years; the time between AIDS and death is about two years. There is evidence in developed countries that the incubation period of AIDS is lengthening. People with HIV/AIDS are living longer and are suffering fewer opportunistic infections, probably as a result of better patient care and medical advances in new antibiotic treatment and antiretroviral therapies. Unfortunately, despite recently formed plans in several developing countries to offer widespread access to antiretroviral therapy, these drugs remain expensive and require complex administration procedures. The survival time for people with HIV/AIDS in developing countries is generally much shorter than in developed countries.

Experience with alternative treatment and care options worldwide has shown that community-initiated care programs are more effective and much less expensive than hospital-initiated care programs. For resource-poor countries, community-initiated care has traditionally been the only feasible option for providing care and support for the continually increasing number of people with HIV/AIDS, although the recent plunge in the cost of antiretroviral drugs and initiatives to provide expanded HIV treatment offer hope to greater numbers of people living with the virus. Components of community-based care and support for people with HIV/AIDS vary among programs. In general, the types of services include counselling and testing, clinical care, home-based care, and social support services

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NUTRITION FOR PEOPLE LIVING WITH HIV/AIDS: A VITAL AND OFTEN NEGLECTED COMPONENT OF HOME-BASED CARE

Malnutrition1 is a serious danger for people living with HIV/AIDS. Even at the early stages of HIV infection when no symptoms are apparent, HIV makes demands on the body’s nutritional status. The risk of malnutrition increases significantly during the course of the infection.  Good nutrition cannot cure AIDS or prevent HIV infection, but it can help to maintain and improve the nutritional status of a person with HIV/AIDS and delay the progression from HIV to AIDS-related diseases. It can therefore improve the quality of life of people living with HIV/AIDS. Nutritional care and support are important from the early stages of the infection to prevent the development of nutritional deficiencies. A healthy and balanced diet will help to maintain body weight and fitness. Eating well helps to maintain and improve the performance of the immune system – the body’s protection against infection – and therefore helps a person to stay healthy.  Many of the conditions associated with HIV/AIDS affect food intake, digestion and absorption, while others influence the functions of the body. Many of the symptoms of these conditions (e.g. diarrhea, weight loss, sore mouth and throat, nausea or vomiting) are manageable with appropriate nutrition.

Healthyand balanced nutrition should be one of the goals of counseling and carefor people at all stages of HIV infection. An effective programme ofnutritional care and support will improve the quality of life of peopleliving with HIV/AIDS, by:

Wheninfected with the HIV virus the body’s defence system – the immune system – works harder to fight infection. Thisincreases energy and nutrient requirements. Further infection and feveralso increase the body’s demand for food. Once people are infected withHIV they have to eat more to meet these extra energy and nutrient needs.Such needs will increase even further as the HIV/AIDS symptomsdevelop.

Peoplewith HIV/AIDS often do not eat enough because:

Whena person does not eat enough food, or the food eaten is poorly absorbed,the body draws on its reserve stores of energy from body fat and proteinfrom muscle. As a result, the person loses weight because body weight andmuscles are lost.  Eating abalanced diet is therefore very important to reduce the effects ofHIV/AIDS and to keep well.

Formore information about nutrition for persons infected with HIV/AIDS see 'LivingWell with HIV/AIDS; A manual on nutritional care and support for peopleliving with HIV/AIDS' published by the FAO.

http://www.fao.org/documents/show_cdr.asp?url_file=/DOCREP/005/Y4168E/Y4168E00.HTM

HIV/AIDS AND NUTRITION

The HIV virus attacks the immune system. In the early stages of infection a person shows no visible signs of illness but later many of the signs of AIDS will become apparent, including weight loss, fever, diarrhea and opportunistic infections (such as sore throat and tuberculosis). Good nutritional status is very important from the time a person is infected with HIV. Nutrition education at this early stage gives the person a chance to build up healthy eating habits and to take action to improve food security in the home, particularly as regards the cultivation, storage and cooking of food.

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