Disclosure of hiv sero-status and associated child and caretaker factors in children aged 7 to 14 years receiving antiretroviral therapy, in care and treatment clinics in Dar es salaam, 2007

Abstract

Background: Paediatric HIV infection continues to increase in sub Saharan Africa as a result of mother to child transmission (MTCT). With the increased availability of anti-retroviral therapy (ART), there is an increasing number of children with perinatally acquired HIV infection who are surviving into mid-childhood and adolescence. It is therefore necessary to gain more of an understanding about some of the complex issues of children and adolescents living with HIV including issues relating to disclosure. It is crucial to involve the child fully in the process of management of HIV disease. An important step in such an undertaking is to have a better understanding of child disclosure practices, and to identify the barriers and enhancers of disclosure to children with HIV Objective: To assess HIV sero-status disclosure among children aged 7 to 14 years attending Care and Treatment clinics in Dar es Salaam. Study design and setting: A cross sectional quantitative and qualitative study using structured and in depth interview guides respectively, at four HIV Care and Treatment Clinics in Dar es Salaam, Tanzania. Study Subjects: A total of 280 HIV infected children aged 7-14 years and their parents/caretakers were identified to join the study as written consent was obtained. Ethical clearance was granted to carry out the study by the Research and Publication Committee of Muhimbili University of Health and Allied Sciences. Permission was also obtained from Municipal Medical Officers and site managers of the four CTCs where the study was to be conducted. Methods: From August to November 2007, a descriptive cross-sectional study collected HIV infected children. Proportionate samples of 272 consecutive children and their caretakers attending four HIV/AIDS care and treatment clinics (CTCs) and a convenient sample of 8 child/caretaker pair for in-depth interviews were recruited. Unstructured individual interviews informed descriptions of nuances related to treatment and disclosure experiences using descriptive summaries of narratives. Univariate and multivariate analyses determined prevalence of child diagnosis disclosure and associations with child and caretaker socio- demographic and treatment related factors. Results: Just over 12% (12.1 %) of children on treatment were formally informed of their HIV diagnosis. Factors independently associated with the diagnosis disclosure to children were older child's (p value <0.001) or caretaker's age (p value < 0.01); caretakers employment (p value 0.02). Similarities in caretaker's diagnosis disclosure concerns across qualitative and quantitative data included the child being too young; and the potential for psychological reactions and family vulnerability to stigma due to inadvertent diagnosis indiscretion in the child. Children knowing their diagnosis better understood their contribution to sustaining health despite challenges, while those not knowing, resented taking medication and depended on caretakers for drug administration (p value <0.001). Discrepancy was indicated in recognition of children's distress when children's accounts of their distress in response to diagnosis disclosure are compared to what was recognised by disclosing parent/caretakers. (sadness 10 (30.3 %), anger, one (3.0%) 22 and in-deference 22 (66.7%) Conclusion: The prevalence of disclosure of HIV diagnosis to children aged 7-14 years is low. Strengthening of guidelines on paediatric care and treatment should include healthcare providers' roles in facilitating child HIV diagnosis disclosure by caretakers. A "right to know" perspective is recommended to enhance full participation of affected children and youths in HIV &AIDS care and treatment. A better understanding of what children mean when they say they become distressed as well as how they respond to this distress could provide information to develop strategies that increase parent/caretakers recognition of distress and appropriate supportive responses. A "right to know" perspective is recommended to enhance full participation of -affected children and youths in HIV & AIDS care and treatment.