FAMILY TIES: Reconstructing the care of vulnerable children

THE 'orphan' LABEL DOESN'T HELP

It is our shared human and global duty is to protect the rights of vulnerable people affected by HIV and AIDS, yet when it comes to children we seem have taken protection too far - we seem to overlook the needs of their families and caregivers who are also in great need of assistance, said Linda Richter and Lorraine Sherr at the AIDS Impact Conference in Botswana in September.

"...no child should be deprived of his family by reason of poverty alone"

Theodore Roosevelt in his address to the White House Conference on Dependent Children in 1909.

From the moment children affected by HIV and AIDS came into the spotlight, they have been portrayed as abandoned and alone. There are pictures of emaciated infants dying on their own because they have no access to treatment, and images of orphaned children, unaided and unaccompanied.

Connective care

Yet, children everywhere are, and should be, connected to adults and other children, through family, kin and clan networks. The need for connectedness is heightened at times of stress, illness or challenge.

Family care is our species-specific cultural adaptation to ensure children's growth, learning and socialisation. As human beings, our neurophysiological functioning, emotional regulation and cooperative learning are tailored to function optimally in stable, secure and affectionate relationships with others. For children, especially young children, this is critical.

Children everywhere are, and should be, connected to adults and other children, through family, kin and clan networks.

In the absence of these social conditions, regardless of the material environment, children grow poorly, fail to thrive, show delayed language, cognitive and motor development and display inappropriate emotional and interpersonal behaviour. This pattern of poor development is seen most clearly in children placed in orphanages at a young age. The effects of distorted early development can be long lasting and manifest themselves in due course, also in disturbed parenting, resulting in a negative effect for the next generation.

For this reason, family reunification, family placement and family strengthening are critical in responses to children dislocated from family and kin during epidemics, national disasters, war and other reasons for the displacement of communities.

But why have we not seen a strong emphasis on family reunification, placement and strengthening in efforts to support children affected by HIV and AIDS, especially as a result of the death of parents, care- givers and other adults responsible for their care? Instead, there has been a proliferation of orphanages, many funded through the faith sector.

Rebranding the orphan

Furthermore, discourse about so-called AIDS orphans emphasises direct service provision to children, including psychosocial support and interventions, but seldom stresses the importance of promoting and supporting family care. The very definition of an orphan is over-inclusive, it brands bereaved children with a surviving parent as ‘orphans' despite the vital importance of support for those parents who remain after having also lost a loved one - and also a critical source of support.

Family reunification, family placement and family strengthening are critical in responses to children dislocated from family and kin during epidemics, national disasters, war and other reasons for the displacement of communities.

It is for this reason that the Joint Learning Initiative on Children and AIDS (JLICA) - a global network of policy-makers, practitioners, community leaders, researchers, and people living with HIV that reviews research and mobilises discussion on children affected by HIV/AIDS - calls for a complete turnaround in this approach. The final JLICA report, titled Home Truths: Facing the facts on children, AIDS and poverty, accentuates the need to reinforce families' long-term caring capabilities as the basis of a sustainable response to children affected by HIV and AIDS, and the need for family-centred services integrating health, education and economic and social support.

A key recommendation of the group is that support garnered for children should be directed to families. Attempts to prevent, treat and care for one vulnerable child at a time, as if they are unlinked to others in their social and familial networks, is not effective. Neither is it strategic or efficient in countries where there is a high prevalence of HIV and AIDS, and up to a third of all households are directly affected by the epidemic.

Income transfers, in a variety of forms, are desperately needed and positively indicated by available research. Basic economic security will relieve the worst distress experienced by families, enable them to continue to invest in the healthcare and education of their children, and to pay for their share of the costs involved in receiving treatment and care, such as transport to health facilities and additional food.

Discourse about so-called AIDS orphans emphasises direct service provision to children, including psychosocial support and interventions, but seldom stresses the importance of promoting and supporting family care.

Professor Linda Richter is the executive director of the programme on Child, Youth, Family and Social Development and Professor Lorraine Sherr is from the department of infection and population health, Royal Free and University College Medical School, University College, London. A special edition of AIDS Care (vol. 21, nr S1, August 2009) was dedicated to different aspects of the JLICA report