Facilitating HIV Testing and Disclosure with Children and Adolescents

This is a report about barriers and challenges in facilitating testing and disclosure for children in 0-6, 7-14 and 15-18 age groups, based on an operations research study conducted by India HIV/AIDS Alliance in Andhra Pradesh and Manipur, where it initiated the CHAHA project (meaning ‘a wish’ in Hindi) in 2007. The programme serves children living with and affected by HIV from the age of 0 to 18 years, and aims at reaching 64,000 children by 2011 with an expanded child-centred home- and community-based care and support (HCBCS) programme. Besides providing direct services and linkages, CHAHA works towards reducing stigma and discrimination through community mobilisation strategies, and improving the quality of life of the affected children and their families. This research is aimed at understanding current barriers and providing possible short- to medium-term solutions, thereby strengthening CHAHA, as well as others working to provide child-centric care and support.

The document points to the sensitive nature of testing and disclosure of HIV in children due to the probability of highly emotional responses, and possible unintentional outcomes such as: inferiority complex; diminished psychological strength; and negative attitude. Thus, to better understand the local context and serve the region's children, the three broad objectives of the study are:

• Identifying challenges and factors that prevent the community from seeking HIV testing of their children.
  
• Understanding issues related to disclosure of HIV status to children, and the social impact related to disclosure faced by parents and children.
  
• Using the study findings in formulating practical solutions to address these issues, and to come up with practical recommendations on building synergistic links between policy and practice.
  

The study was conducted in Hyderabad, Nalgonda, and Krishna districts of Andhra Pradesh, and Bishnupur, Chandel, and Imphal East districts of Manipur. The research is exploratory in nature, and has used a mix of qualitative and quantitative methods. Respondents were: (i) parents of children in 0-6 year-old and 7-14 age groups who have been referred for HIV testing; and (ii) adolescent boys and girls in the 15-18 age group. Also part of the respondents were community representatives like children living with HIV (CLHIV) network members, village school teachers, religious leaders, village leaders, and service providers such as integrated counselling and testing centre (ICTC) staff, field health functionaries, outreach workers (ORWs), and non-governmental organisation (NGO) representatives.

The study was based on the assumption that the issues and challenges of testing and disclosure would differ in the three age groups. However, key findings overlapped significantly and highlighted several factors that prevent parents from taking their children for HIV testing across all age groups. The stigma and discrimination associated with HIV and AIDS was reported to be the most common barrier. "It creates a psychological fear and prevents many children and adolescents from getting tested." Financial constraints resulting from time (lost wages) and travel costs closely follow as a barrier. Disclosure of their locality was a parent fear. Lack of parent awareness of HIV and AIDS was also reported, with the associated difficulty of explaining testing to their children. Low motivation resulted from parents' grief at finding themselves to be HIV positive, fear both of knowing their children's status and of possible stigma and discrimination, and disillusionment that antiretroviral therapy (ART) can extend life but not cure HIV and AIDS.

Disclosure of HIV testing results generally included: no disclosure for 0-6 year olds; parents and/or healthcare service providers disclosing status to most children in 7-14 age group; and mostly doctors to adolescents in aged 15-18. Parents generally preferred to be the channel for disclosure, though a nearly equally selected group was the NGO staff that shared a good rapport with the community. ICTC staff is also involved in disclosure of status. The study found that there were immediate negative psychosocial effects on children and adolescents that needed to be addressed through counselling and guidance. A key finding related to age was that 10 years old or older was considered the appropriate age for disclosure by most parents. Counselling for parents was recommended in the findings to help them with feelings of guilt and sorrow. A healthy disclosure situation for the older age groups was recommended, as well as possible involvement of trusted and understanding teachers. In the adolescent age group, peer support was recognised as valuable, but it should be monitored by a professional counsellor.

Further recommendations include:

• Increasing the testing centre locations and their hours and days per week of business.
  
• Earlier testing methods of infants.
  
• Capacity building and training for all - parents of children and adolescents, healthcare workers, counsellors, outreach workers from NGOs - in psychological aspects of disclosure, and improved counselling services.
  
• Awareness generation, training, and sensitisation of health care providers and clinic staff.
  
• Awareness and sensitisation at the community level brought about by involving children and families actively in care and support interventions and framing of policies.
  
• Support group formation.
  
• Creating awareness through information, education, and communication (IEC) materials, and strengthening their reach in all the intervention areas through ORWs.