Thursday, June 6, 2013

A New Beginning: A Training Book on Home Based Care for Children With HIV/AIDS by Dr P Manorama MD


1. Introduction:

The stigma attached to the HIV epidemic is more dangerous than the epidemic itself. Especially, innocent women who inherit the pandemic from their husbands and the innocent children who inherit from parents are condemned by the society for no fault of theirs. They are not allowed to live a normal life like others. Children with HIV infection are not given admission in schools. In India there are about 84,000 children less than 15 years of age living with HIV. There are a few N.G.Os who have taken up their cause and help them in leading a normal life.

Dr P.Manorama is a well qualified and experienced social worker who is a pioneer in the field of HIV intervention. She established Community Health Education Society (C H E S) in Chennai and has adopted more than 500 children who have inherited HIV from their parents. (some of them are no more now). She is training several medicos and non-medicos on how to provide community and home based care to Children. For this purpose, she has written and released the book "A New Beginning" which is first of its kind in Tamilnadu. This book has helped many individuals and agencies alike in broadening their understanding to plan and also to execute with perfection comprehensive programmes for intervention with children affected and infected with HIV/AIDS.

The author of this article got a formal training with famous Christian Medical College, Vellore in this field and later was guided by Dr P.Manorama to get his PhD in alternative medicines (Psychological Counselling) and he is glad to submit the following article for information of readers. It is hoped that readers will get first hand information of this pandemic and ways and means to treat the children with HIV/AIDS.

2. Essentials of Home-based Care:

WHO defines home based care as a provision of health services by formal and informal caregivers in the home in order to promote, restore and maintain a person's maximum level of comfort, function and health including care towards a dignified death. It can be classified into preventive, promotive, therapeutic, rehabilitative, long term maintained and palliative care categories.

The goal of Community Home Based Care is to provide hope through comprehensive care, helping patients and families maintain their interdependence and have the best quality of life.

It should also reduce the stigma and discrimination associated with the disease by providing emotional, physical and nursing care. It will also be the most cost effective model.

3. What are the formalities to be observed by the health/social workers while visiting homes of HIV/AIDS affected/infected children?

'Infected' means the children who are infected with HIV whereas 'affected' means people around them say, parents are infected, by virtue of which, lives of children are affected. Likewise, HIV children means only infected with HIV whereas AIDS means somewhat advanced stage of infection wherein other opportunistic infections have spread over the child.

The things to be done by Health workers while visiting home:

1. General enquiry about the health of the family is to be made and relevant medical records are to be organised.
2. Specific enquiry about health of children to be made, look for any possible weight loss. The nutrition should be taken care of by giving needed tablets and simple food.
3. To verify whether any ART (Anti Retro Viral Treatment) treatment is given to the children with visit to ART centres.
4. Environmental issues are to be attended. Stigma issues are to be discussed freely.
5. CD4 counts are to be verified at regular intervals.
6. Education should be taken care of.
7. They should reach children by freely mixing and playing with them.

Thus the primary need of health workers attending to the children is empathy and understanding of issues related to children.

Medical Care Taken to Homes:

HIV/AIDS is a chronic disease and needs prolonged lifelong care. Many a time, children with HIV may fall sick and need hospitalization. Also it may need continued treatment at home.

Children with HIV live for long years, when they receive good nutrition, care and treatment. It is very unfortunate that some children develop AIDS and have premature death for want of proper care and treatment. Hence, social workers visiting children at home need to understand the growth and development and possible basic care is to be given at home setting. Hence the basic need for a social worker in this field is identification and management of opportunistic infections (OI) and ART and also the terminal care. The pathetic aspect in this field is that the worker should be aware of even cremation arrangements when an AIDS affected children dies because people may refuse to undertake that work also because of the stigma.

5. Certain Common Infections and methods to handle them:

Common fever: The child should inhale fresh air. The skin is to be wiped with wet cloths all over the body till the temperature reduces to normal. If the child has high fever above 38.5 C paracetomol tablet is to be given.

Diarrhoea: Lot of fluids like rice water with salt, tender coconut water, butter milk, dhal water, rice kanji, soup, tea and fresh fruit juice are to be given. Older children may be given easily digestible food like idly, banana etc.

Common respiratory disorders like sinusitis and pneumonia:

Caregiver should clear the congested nose using a cotton cloth moistened in clean salt water. They should be given warm water at regular intervals. The head position should be raised with more pillows to help avoiding breathing problems. For babies who need feeding, it is better to give frequent feeding in small quantities.

Oral Thrush:

This is a symptom of fungal infection and a hallmark of HIV/AIDS. Children cannot eat and drink properly. They will have difficulty in swallowing. Oral cavity will show the plaques if white semi solid materials.

Gargling with salt water will help easing the throat. Clean mouths four times a day with soft cotton swabs. Cold food and drinks may be given. Spicy foods and citrus fruits are to be avoided. Soups and yogurt are good. Gentian violet solution may be given 3 or 4 times a day. If there is no improvement, a qualified doctor is to be consulted immediately.

Skin problems:

Skin problems arise because of bacterial, viral and fungal infections and scabies. The symptoms are itching, pustules and rash. The following basic treatments are recommended:
Daily bathing, the skin is to be smoothened using calamine lotion, coconut oil, soaps and lotions will reduce itching. Baby's bottom is to be exposed to free air (as against using nappies). Potassium permanganate solution is a good antiseptic for soaking infected soars.

Bed Soars:

Bed sours are caused when children are bed ridden. Caregivers should encourage getting out of bed often. Their position is to be changed once in two hours. Bed also is to be changed at regular intervals. Medical guidance should be taken before giving local anaesthetics for pain relief.

6. A R T (Anti Retro Viral Treatment)

(History of ART and other details about the treatment are reserved for a future article. In this article, we shall deal with only the topic of ART to paediatric patients by the caretakers and its follow up)

1. Parents are to be counselled before starting ART to their child. Medicines, once started cannot be stopped unless the child develops enough resistance. Parents are to be counselled about the cost involved (in case of private hospitals) and the results of ART, that it is no permanent cure for AIDS but improves the immune system helping the children to lead a dignified life and improve the life expectancy.

2.Paediatric syrups and Fixed Dose Combination are available free of cost at ART centres of Government hospitals.

3. CD4 is the best measurement for assessing immune deficiency and should be used in conjunction with clinical assessment. It helps to decide when ART should be started. Children up to 6 years of age have high CD4 count because of high lymphocytes. CD4 automatically drops to normal values when the reach the age of 6.

4.The persons registered for care and treatment at ART centres should have their clinical stage of HIV. The initiation of ART is based on the clinical stage and the CD4 count. The lack of CD 4 count should not delay the initiation of ART if the patient is clinically eligible. But, however the result of CD4 should be obtained as early as possible. That is why CD4 count testing is also free all over the country.

5. Finally, drug adherence should be evaluated with utmost care.
Involvement of children in treatment preparation is to be ascertained.
Half-hearted attempts to initiate therapy should be avoided.

CONCLUSION:

We had been seeing certain important aspects of paediatric HIV/AIDS care by caretakers as instructed by Dr P.Manorama in her book on this subject. AIDS pandemic is no more a dreaded disease or the caretakers are to worry about possible infection. The stigma and discrimination is much reduced because of the tireless workers like Dr P.Manorama and her volunteers.

This article is a humble attempt as a tribute to the great work rendered by them.

If the readers get clarifications about paediatric AIDS and they offer to volunteer their services to the innocent children who suffer for no fault of theirs, the aim of this article is fulfilled.

Let me complete this article by paying respects to thousands of social workers and caretakers who work in this field as volunteers against odds.

No comments:

Post a Comment