Meeting the needs of caregivers of children affected by HIV/AIDS

August 18, 2005

A MEETING OF THE CAREGIVERS OF POSITIVE CHILDREN IN A HOSPITAL SET UP.

Thrissur medical college is a tertiary level referral centre in Central Kerala.

We have around 1000 HIV positive patients registered in our Infectious Diseases

Clinic. Around 100 children are under regular follow up, with around 20 on

ART. Our patients come from our own as well as 4 other neighboring districts.

Though a state level positive peoples' group is working in most districts, a big

chunk of our patients who come from rural background do not go out to discuss

their various issues. This made us think of conducting a meeting of these

patients within the hospital, to avoid their practical problems. Caregivers of

HIV positive children have various other issues also. So we decided to include

them only in the first meeting.

On August 2nd,2005, an informal meeting of the caregivers of HIV positive

children was conducted in the Dept of Paediatrics.16 caregivers attended along

with 2 from the positive peoples' network, 2 VCCTC counselors and 4 doctors.

Following a brief introduction by one of the positive network persons, each

attendant was given opportunity to vent out their problems. The main issues that

came out were:

1. Social Stigma

2. Financial Problems esp. for widows

3. Fear of infecting negative siblings.

4. Problems in school and workplaces.

5. Use of alternative medicines.

6. Nutrition of positive children.

7. Doubts regarding ART.

8. Fear of death of parents.

9. Revealing the status to negative children and family members.

At the end of this discussion, medical officers discussed the above issues,

clarified their doubts and gave a brief talk on hygiene, safe sex, disposal of

infected materials at home, preventive care and ART adherence. Meeting was

concluded with a decision to meet at least in 6 months. Though a small step, we

hope that this would help our patients to have a better knowledge of the disease

and to live with it positively.

Dr Lathika Joju MD (paed)

Dr Ajithkumar.K (Derm)

Senior lecturers

MCCH, MG Kav, Trichur

E-mail: <trc_ajisudha@...>

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