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Breaking the silence: approaches and benefits of intensifying pediatric disclosure and psychosocial support in clinical settings in Kenya through the Mwangalizi pilot Project
N. Kist1, S.W. Macharia1, A. Ahmed2, E. Chester3, E. Chelimo3, P. Muigai4, A. Njoroge5, I. Tsikhutsu6, R. Omollo7, H. Dalton1
1Academy for Educational Development (AED), Capable Partners Program (CAP) Kenya, Nairobi, Kenya, 2Bomu Medical Centre, Mombasa, Kenya, 3Academic Model for Providing Access to Healthcare, Eldoret, Kenya, 4Coptic Hospital, Hope Center for Infectious Diseases, Nairobi, Kenya, 5Eastern Deanery AIDS relief Program, Nairobi, Kenya, 6Kericho District Hospital, Kericho, Kenya, 7Independent Consultant, Statistician, Nairobi, Kenya
Issues: HIV-positive children often have no knowledge of their HIV-status, the effects of which are underestimated. Lack of disclosure creates barriers to adherence, clinic attendance and normative psychological development. Psychosocial services are not prioritized due to the limited experience of health workers, limited engagement of children in care, the absence of non-clinical protocols and caregivers' refusal to consent. With a growing pediatric population whose lives are extended with ART there is increased need to respond to the psychosocial implications they face growing into adolescence and inevitably the knowledge of their HIV-status.
Description: This pilot tested a framework linking the facility and household through a continuum of care mitigating barriers that affect optimal pediatric management. A real-time evaluation methodology was applied to extract learning and determine impact. Data collected over 18 months include number of disclosures and thematic documentation of child-expressed concerns. Focus-group discussions document changes in children's psychological state, understanding of their HIV-status and willingness to take medications and attend clinic.
Lessons learned: 20% of 3,621 enrolled children underwent disclosure. Statistically significant improvements in adherence and clinical outcomes occurred. Qualitative data document increased knowledge of HIV-status, ART adherence and child-ownership of health services. Culturally specific disclosure protocols were developed identifying that children indicate the appropriate time for disclosure. Categorical child-expressed concerns included: treatment literacy, stigma, household poverty, disclosure, self-image, relationship formation and the future. Customized counseling intentionally addresses these needs.
Next steps: Intentional shifts in health service cultures must directly involve and empower children in their chronic health management and support positive behavior formation. National priorities must include specification of pediatric services with respective protocols, including defining psychological indicators, service standards and guidelines that are flexible for cultural adaptation and establishing age-specific support groups to facilitate social development and self-acceptance. Integrating age-appropriate positive prevention, reproductive and sexual health services are urgently needed at facilities.
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