Abstract #382  -  A Cross-Sector Needs Assessment of Children Infected and Affected by HIV in Scotland
Authors:   Presenting Author:   Dr Dina Sidhva - University of Edinburgh
Additional Authors:  Prof Viviene Cree,
Aim: The aim of this six-month cross-sector needs assessment (funded by the Elton John AIDS Foundation) was to compile up-to-date information on the numbers of children affected and infected by HIV in Scotland; and to develop an understanding of their needs and looking at available services. It was expected that the knowledge gained from the study would be utilised in a variety of ways, such as setting goals, developing action plans, allocating resources, developing effective programmes and policies, and determining direction for services for children infected and affected by HIV.
Method / Issue: The study was a purposive study, made up of three parts: • A scoping study of literature and reports, focusing on findings from studies conducted in recent years; • An epidemiological survey of infected and affected children which was based on published statistics on infected children and the methodology used in an earlier study of affected children by Inglis and Morton (1996). • A small number of interviews with practitioners, parents, infected and affected children and young people.
Results / Comments: HIV continues to carry considerable risks and challenges for both infected and affected children. Although infected children inevitably experience additional issues in terms of their own health and well-being, HIV brings stress and disruption to relationships and childhoods for infected and affected children alike, not least because of the very special nature of HIV stigma. This study found that there was a strong relationship between the ‘well being’ of parents/carers and young people with the services provided. The quality and nature of services provided by some specialist HIV agencies were described by service users as life giving. Conversely in areas where individuals have felt bereft of support because of a lack of services this had a direct negative impact on their ‘well being’.
Discussion: Looking ahead, it seems likely that as parents and children live longer with HIV, so HIV may increasingly become perceived by government agencies and service providers as a long-term, chronic illness like any other and financial support to organisations which work with families may be reduced. Moreover stigma continues to be pervasive and a definite part of people’s lived experiences. One might have believed that given the length of time that HIV/AIDS has been around and the advent of ART that HIV/AIDS would be viewed as another chronic illness—however it is not the case. There is a real need for a specialist, confidential, sensitive, tailor-made service for children and young people.
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