Exploring child HIV testing decisions in mothers with HIV

1. St George’s Healthcare NHS Trust Michael Evangeli1, Anastasia Stamatelatou1, Wendy Majewska2, Simone Ghosh2, Helen Webb2, Sheila Donaghy2, Katia Prime2 1 Department of Psychology, Royal Holloway University of London, Egham, Surrey, TW20 0EX, UK. 2 St. George’s Hospital, Courtyard Clinic, Blackshaw Road, Tooting, London, SW17 0QT,UK. Contact: michael.evangeli@rhul.ac.uk Background Current HIV testing guidelines emphasize the importance of HIV testing of at-risk children to reduce mortality and morbidity. However, significant numbers of children born to HIV-positive mothers in the UK remain untested. There has been little research on the experiencesof HIV-positive mothers’ child HIV testing decision-making.We explored child HIV testing decision-making in HIV-positive mothers for children born prior to the mothers’ own diagnosis. Exploring child HIV testing decisions in mothers with HIV Methods Seven in-depth, semi-structured interviews were conducted with HIV-positive mothers with untested children (<18 years) at the time of their own diagnosis. Interviews took place between 1st January and 31st March 2013. Participants were recruited from an inner city London HIV out-patient clinic with all eligible mothers approached. All children of participants <18 years untested at the time of the mother’s diagnosis (9 children) had been tested by the time of interview (2 HIV positive, 7 HIV negative). Participants differed in the duration between their own diagnosis and child testing (1 month to 2 years). Grounded Theory was used to analyse the data. Results Five theoretical codes were elicited: Fearing about own and child’s future; Facing barriers to child testing; Feeling more confident in child testing; Developing an understanding of child testing; and Protecting the child. A proposed chronological model of maternal decision-making process is presented (see diagram below) starting with maternal diagnosis and progressing through to child testing. At the same time as trying to adjust to their own diagnosis, mothers experience anxiety about their own and their child’s future. They assess the risks and benefits of testing, a process characterised by considerable ambivalence. Some doubt the likelihood of their children having HIV based on their existing HIV knowledge. Perceived social norms regarding child testing, particularly concerns about partner testing attitudes can reduce motivation to test. Eventually a perceived ‘need to know’ their child’s status, accompanied by feelings of responsibility towards the child and increased confidence about child testing (through professional advice and support), increases the likelihood of making a decision to test. Conclusion The findings provide evidence to inform current guidance and clinical practice, stressing the importance of the provision of accurate information about HIV and consideration of partner attitudes towards child testing. • References • Andrews, S., Handyside, R., Carpenter, L., Price, A. & Prime, K. (2010). Testing children of mothers with HIV: experience from three southwest London clinics. Poster Abstract presented at the British HIV Association, HIV Medicine, 11 (Suppl. 1), 67. • British HIV Association (BHIVA). (2009). ‘Don’t Forget the Children’: Guidance for the HIV Testing of Children with HIV-Positive Parents. A consensus document. London: Mediscript Ltd. • Ghosh, S., Majewska W., Donaghy S., Storey, S., Webb, H. & Prime, K. (2012). Testing children of HIV positive mothers: experience from a SW London clinic. HIV Medicine, 13 (Suppl. 1), p. 36.