Conference Update -- The Symposium Family Support First: Working Together to Achieve Universal Support and Access to Treatment

Before the start of the International AIDS Conference a group of over 450 academics, policy makers, researchers, implementing agencies, activists, and community representatives met in Vienna to discuss the importance of families in the HIV response.

The Symposium  Family Support First: Working Together to Achieve Universal Support and Access to Treatment was organised by the Theresa Group and Coalition for Children Affected by HIV and AIDS. This event has taken place every 2 years since the Toronto 2006 International AIDS conference in response to the lack of sessions at the IAC focussed on children and their families. A group of concerned individuals who had attended the Bangkok  conference in 2004 and witnessed the decorative use of young children at the opening ceremony, but a total absence of children’s issues in the main conference , decided something needed to change.

The symposium event has grown over the last 6 years to bring together more and more of the key people in the sector, discussing the care, support and protection of children affected by HIV and AIDS. This year the event welcomed the likes of Michel Sidibe UNAIDS, Jimmy Kolker UNICEF, messages from Gracha Machel and a closing speech from Elizabeth Mataka, Special Envoy for AIDS in Africa. Despite this growing international profile for the event you might be surprised to hear that over the 6 years there has still been no significant increase in the inclusion of the issues of children and families into the main conference.

 Analysis done by CCABA over the last 6 years calculated that you were 6x more likely to have an abstract accepted for the conference if you did not use the word’ children’ and 11x more likely to be accepted  if you used the word ‘Bill’ as in Clinton or Gates. Children and their families are critical to the HIV and AIDS response. We cannot eliminate pediatric AIDS without families, we cannot achieve universal access without a focus on families, when is the world going to wake up to this reality and give children and families their rightful place on the agenda?

Pre-International AIDS Conference Symposium on Children Affected by HIV and AIDS

As the pre-conference symposium on Children affected by HIV and AIDS closes and the 2010 International AIDS Conference in Vienna opens, the call for the end to paediatric AIDS strengthens.

Michel Sidibe from UNAIDS opened both events with a commitment  to this goal for 2015 and expressed his belief that it could be a reality. However, much as I want to share this optimism I find it hard in the light of the continuing violations of the rights of the most vulnerable families in society.

For the prevention of mother to child transmission we need pregnant mothers to be in antenatal services, be offered services that can protect them and their child and support them to live into the future. With the right service, at the right time less than 2 per cent of children born to HIV positive women would be born HIV positive. 

We have the knowledge, we have the science, we have the money - it is a very affordable intervention but there are still so many who are not getting this service.
 
For many this is due to poor health services, limited trained staff, lack of availability of the drugs, poor follow up with families, limited community involvement but for some it is something more shocking that prevents them from receiving the vital support to ensure their children are born HIV free.  That is stigma, discrimination and prejudice.

Sex workers, people who use drugs, men who have sex with men, all have children. They all want their children to be healthy, happy and safe. Yet these families are the most marginalised, highly stigmatised and under serviced.

These families are afraid to come forward for services for themselves and their children for fear of having their children taken away. These families are not able to be honest about the challenges they face, the difficulties they are dealing with, for fear of prosecution, violence and abuse. Their children are missing out due to moral values and judgement of others.

These are families that are too easily forgotten, unrecognised and excluded from services yet as with all children they have the right to health.

The consequence of this exclusion is children die. One third of children born to HIV positive mothers will die within their first year of life and two thirds by their second birthday.

So how do we reach these families and build their trust in systems and services that currently do not recognise their rights or cater for their specific needs and circumstances? Without their greater inclusion we can never reach this important, but currently idealistic target of an end to paediatric AIDS. The Theme of the conference is Rights Here Right Now and never has this been more important!
 

Entry #3:  Understanding social networks in concentrated epidemics
In high prevalence, general epidemics social networks are significant in sustaining care and support for families affected by HIV.  However, in concentrated epidemics, programs are challenged to consider the reach of social networks and the changing dynamics of “family” for socially marginalized groups (MSM, FSW, IDUs). Research indicates that in such settings, the stigma associated with marginalized groups often means that their family changes from the nuclear conception of the term. These groups are socially networked and these networks provide some forms of support.
 

Entry #2:  Grandparents – correcting a common misconception
A serious misconception on grandparent headed households is that they are all elderly or consist of frail caregivers unable to provide adequate support for the children under their care.  Recent evidence indicated that some grandparents are young (60 or less) and quite able and even those who are not young are finding ways through social networks to provide for the children under their care. The existence of social networks and the ability to engage reciprocally in these networks are key to sustaining support for these households.
 

Entry #1: Children as carers

In the recent past, research conducted on children affected by HIV/AIDS indicated that the phenomenon of child headed households was not as prevalent as we thought. However, recent evidence indicates that we were looking at the issue in the wrong way. It is not who is heading the household. Rather, it is who is assuming caregiving responsibilities within that household.
 
More and more the burden of care is shifting to children even in instances where there is an older caregiver in the household. However, that caregiver may be ill or too frail to adequately handle all the caregiving tasks. As a result, children are taking more responsibility for providing for the families (engaging in economic activity) and providing care for other members of the households including young children and older grandparents.  Child carers include a wide range of children beyond those who are heading households. It also includes children who are living with parents who have a chronic and debilitating illness; those living with and caring for increasingly frail grandparents, who may have formerly been caring for their adult child; and those heading households and caring for younger siblings.  The changing caregiving dynamics requires a paradigm shift from thinking only of child headed households as the target group for intervention. Rather, we should be looking more at the age and capacity (including a look at disability) of caregivers in these households.

Within each of the five key strategies outlined below, summary results for the corresponding indicators are presented in table format at both the country level and regional level.

1. Strengthening the capacity of families to protect and care for children.
2. Mobilizing and strengthening community-based responses.
3.  Ensuring access to essential services.
4.  Ensuring that governments protect the most vulnerable children.
5.  Raising awareness to create a supportive environment.

The 2009 Progress Report shows that considerable progress has been made in many areas particularly the increasing percentage of double orphans attending school in sub-Saharan Africa. However there is still much more that needs to be done: OVC are still less likely to have their basic materials met; have higher prevalence of malnutrition; and more likely to initiate sex before age 15.

Although more data are available than ever before on OVC   there are still considerable gaps in the data, which points to the need for greater investments in national monitoring and evaluation systems for children affected by HIV and AIDS.

During 2010 UNICEF will also be working with other key stakeholders to review the existing global OVC indicators to ensure  a robust and valid set of core indicators that can be easily collected at a national level.

The report can be downloaded here

Recognizing the urgent need for concerted action and support, the Better Care Network (BCN), an interagency network facilitating global information exchange on the issue of children without adequate family care, was formed in 2005.  The BCN is guided by BCN Steering Committee and administered by two-person Secretariat, housed at UNICEF Headquarters. As part of its core mandate to facilitate global information exchange, in 2006 the BCN launched its website  The website library contains over 600 research, theoretical, and policy documents directly related to the care and protection of vulnerable children.    The website does not contain documents directly related to the implementation of good practices in care; such as, guidance on the policies, laws, and structures required to effectively care for children, as well as manuals and tools on setting up and delivering quality care placements.     Thus, there is still a significant need to provide childcare practitioners with practical tools to assist them in their day-to-day work.   In response to this need, in 2009-2010, the BCN developed the Better Care Network Toolkit.
 
The Better Care Network Toolkit has been developed to support practitioners around the world in planning for and delivering better care for children who require an out-of-home placement. It contains a selection of practical guides and manuals, chosen as examples of good practice and for their global relevance particularly for low resource settings. They cover the types of policies required to support a quality care system, and practice guidance and tools for the delivery of alternative care.    The BCN Toolkit can be used and adapted to serve as a professional development tool for practitioners worldwide.
 
The BCN Toolkit is now available as a ‘Practitioner’s Portal’ on the BCN website.
 
To support toolkit users the website includes: toolkit guide,glossary of terms and advanced search function.
 
For information regarding BCN and the BCN Toolkit or to receive BCN’s bi-monthly email newsletter, feel free to contact the BCN Secretariat, gkeshavarzian@unicef.org.