India HIV/AIDS Alliance
This India HIV/AIDS Alliance policy brief discusses: the challenges faced in facilitating HIV testing of children and adolescents and in disclosure of their and their parents' HIV status; the field reality related to testing and disclosure in the CHAHA programme, a child-centric home- and community-based care and support programme; a description of the operations research conducted; and a summary of study findings. The policy brief is based on an operations research study on finding the barriers and challenges in facilitating testing and disclosure for children in 0-6, 7-14, and 15-18 age groups. The study was conducted in the Indian states of Andhra Pradesh and Manipur with the aim of understanding current barriers and to provide possible short- to medium-term solutions, thereby strengthening child-centric care and support to children living with and affected by HIV.
As described here, "The CHAHA programme works closely with different stakeholders and Government Ministries to find ways to help keep children with their parents or extended families. A network of significant number of Outreach Workers (ORWs) identifies affected children and their families and apart from providing direct services and linkages, motivates them to get their children tested." CHAHA provides counsellors at its test sites to address psychosocial issues of families. Nonetheless, the research, including key informant interviewing (KII), in-depth interviewing (IDI), focus group discussion (FGD), and case study analysis, showed barriers and challenges to testing and disclosure.
Challenges for testing include the following:
- Non-availability of the Polymerase Chain Reaction (PCR) test and other specialised techniques in testing children under 18 months of age
- Stigma surrounding HIV/AIDS as a deterrent to parents
- Parents’ fear of finding out their own status
- Inaccessibility of healthcare centres that provide testing
- Insensitivity to children’s needs or quality of service at integrated counselling and testing centres (ICTCs)
- High travel costs and insufficient available hours of ICTCs
- Lack of timely and reliable information about needful testing, disclosure, nutrition, and treatment, especially for adolescents
Challenges for disclosure to children include the following psychosocial barriers:
- Negative emotions that the child may undergo
- Child's age and consequent inability to comprehend the situation
- Parents' inability to answer the question about the child's survival duration
- Hurdles in future prospects like marriage and employment opportunities
- Fear of stigma and discrimination
- Social and economic insecurities
- Parental guilt
- Parents' denial of, or difficulty in confronting, their own illness.
With the aim of advocacy with the Indian Government, the policy brief puts forth key recommendations. Among them are the following:
- Expand number of locations and hours of operation of ICTCs.
- Fill in gaps in infrastructure, equipment, and human resources of ICTCs.
- Monitor the staff presence and punctuality at the centres.
- Generate informed demand from communities and health care providers about the DNA-PCR technique and adopt the Dried Blood Sample (DBS) method.
- Provide capacity building and training for parents, healthcare providers, counsellors, and outreach workers from non-governmental organisations (NGOs) - in particular, providing: child-centric counselling; knowledge on adolescent sexuality, especially on how to relate to young girls; and specific training on disclosure.
- Include play therapy, storytelling, drama, dance/movement, drawing, and art to enable emotional expression.
- Enlist professionally trained counsellors and provide consistent and ongoing training, including: assessing maturity level of children to understand the benefits and risks of testing and for providing consent; understanding how to inform a child of his/her HIV status; talking to children about death and bereavement; helping children cope with emotions and challenges when they know their parents' HIV status; and helping them make choices and decisions that will prolong and improve the quality of their life.
- Scale up youth-friendly testing and counselling.
- Develop systematic plan to aid parents in disclosure, including post-disclosure issues.
- Focus on positive living.
Information, education, and communication (IEC) coverage:
- Create awareness through IEC materials.
- Strengthen its coverage to intervention areas.
- Facilitate its "special observation time" periodically.
- Intensify its use by ORWs and counsellors and in support groups and training sessions.
Email from Pankaj Anand to The Communication Initiative on May 27 2010.