challenges in home-based care and support for children ... day 1/theme4...
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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