Challenges in home-based care and support for children ... Day 1/Theme4...

Irwanto,

Nita Anggriawan, Ropina Tarigan, Natasya Sitorus, Rudi Mulia Lentera Anak Pelangi, HIV and AIDS Research Center,

Atma Jaya Catholic University – Jakarta, Indonesia

Child Poverty and Social Protection Conference

Jakarta, 10-11 September 2013

Challenges in home-based care and support

for children living with HIV in Jakarta, Indonesia.

HIV IN INDONESIA 2012 Estimated Number of PLWHIV: 591.823

ESTIMATED COURSE OF THE HIV EPIDEMIC IN INDONESIA 2008-2015

EPIDEMI HIV DI INDONESIA CURRENT MODE OF HIV TRANSMISSION

CHALLENGES FACING WOMEN and CHILDREN

• HIV di Indonesia 2012 estimated number of PLWHIV: 591.823 • GENERAL:

Socialization of harm reduction has not been successful The role of men in PMTCT is too small Lack of integration of HIV-AIDS prevention with other programs such as family planning, ANC, STD

and violence against women Disclosure or partner notification procedures do not run well or less effective strategies Stigma and discrimination

• ECONOMY

Losing her job Impoverishment

• HEALTH

The lack of knowledge about HIV-AIDS and HIV treatment, pregnancy, OI management, care of children with HIV-AIDS

Lack of empowerment programs for women and children living with HIV

LENTERA ANAK PELANGI

• COMMUNITY SERVICE UNIT OF THE

CENTER OF HIV/AIDS RESEARCH, ATMA JAYA CATHOLIC UNIVERSITY – JAKARTA, INDONESIA

• PROVIDES HOME-BASED CARE, MEDICAL SERVICES, NUTRITION, PSYCHOSOCIAL and ADVOCACY PROGRAMS

• OUR TEAM

• BENEFICIARIES 54 CHIDREN (0-12 YEARS OLD) AND FAMILIES

• HEALTH Opportunistic infections Unbalanced nutrition - poor diet Adherent against drugs Caregivers lack knowledge about health, nutrition and sanitation The lack of specialist doctors and other paramedics for cases of

children with HIV-AIDS Limited access for pediatrics ARV and HIV pediatrics patients Incomplete immunization

• DEMOGRAPHIC CONDITIONS

Absence of caregiver ; 70% are orphans Must work well as parenting Low education and low economic background Impoverishment (impoverishment)

CHALLENGES IN CAREGIVING

• ADVOCACY

Disclosure and stigma concerns (public and school) The difficulty of infiltration into schools for education about HIV-AIDS Unavailability of HIV-AIDS integrated outreach program for youth HIV-AIDS prevention policies are not focused on children Documenting children with HIV-AIDS has not performed optimally

• PSYCHOSOCIAL

Absence of parents / caregivers Medication adherence Parental illness / death Self-discrimination

CHALLENGES IN CAREGIVING

SOLUTION

• Education programs for health & nutrition, parenting, HIV pediatrics homecare to reduce pain and prevent

death of the child with HIV-AIDS

• SKILL SHIFTING Medical doctors should be able to transfer their skills and knowledge in handling cases

of HIV pediatrics to other paramedics (such as midwifes and nurses)

• Develop the psychosocial support programs for parents/caregivers and children, especially in grieving

process.

• Develop the program and strategy for disclosure

• Expanding the access for HIV pediatrics and ARV provision, incl. ARV in the single dose

• Advocating the rights of children living with HIV to acquire education – This should be the responsibility of

Central Government to provide the National Regulation, and could not pass on autonomous region or

school.

• Pioneering integrated outreach programs for adolescents living with HIV

THANK YOU