Ensuring quality care at home for children affected by HIV

May 2, 2016

A strong, supported workforce in healthcare facilities is essential for providing effective services to children living with HIV. However, the needs of family carers, home-based carers and community carers are often overlooked, while their role is vital in keeping children alive and happy, and preventing losses across the paediatric HIV care. How to best support caregivers?

Support needs to continue throughout childhood

Children (0-14) spend most of their time in the family environment, so this is the most influential place for children. Without a strong family and support system children will be left behind. Ensuring their development therefore requires building the family caring capacity.

To maintain the developmental gains of early interventions, programming needs to continue throughout the childhood, following children through critical transitions, such as entering school, establishing peer relationships and a sense of self-identity, and developing a set of value and norms for behaviour. Only with a life course development approach children will develop into resilient adolescents.

While support for caregivers is critical in the earlyyears, it must also be sustained as children grow. And, as they grow,programming for caregivers must build on a parallel track to meet thedevelopmental needs of older children and adolescents.

Who are the caregivers?

Knowing who the caregivers are, is a very essential first step in providing support. We need to be aware that these include both formal (external) and informal (caregivers within the home) workforces. Both playing their own essential role.

Who is in the family care force?
It is the adults person or people who could care for are willing to care for a child by providing being responsible for  being positively involved financial material emotional in any way meeting his or her basic needs.

We should avoid thinking that carers are always in a certain age category and live permanently together with the children they care for. Some caregivers play a large role in a child's live, but don't live with the children. In other situations children belong to more than one household. So focussing on the woman you find at home when visiting the child, may not be the right choice, just as focussing on one parent.

What is clear is that the in-home caregivers don't have one singular profile. They include:

  • families with a variety of co-habitation arrangements;
  • families where children move back and forth between parents living in different settings;
  • situations where the parent lives mostly elsewhere most of the week;
  • younger parents that are teenagers and who require care themselves;
  • older children and youth who are carers of younger siblings;
  • older adults. 

How can we support the caregivers?

Firstly we need to increase the linkages between the formal and informal workforces. The formal workforce transfer skills to family caregivers, and engage them in reflective practice, using simple, low intensity tools. This can ensure that family caregivers themselves have the capacity to support the children across the life course.

Secondly, practical skills needed by family caregivers can easily be supported with low-cost, low-intensity interventions, such as the World Health Organization's Care for Development package that can be integrated as part of existing health, education and social protection systems. Similar approaches need to be developed for middle and later childhood. In an HIV context, this is even more crucial, as being cared for by an HIV-positive caregiver remains a risk factor for children.

Next to the creating linkages and building practical skills of family caregivers, broad, progressive social policies, regulations and resources are essential and need to be advocated for. Such policies include those related to sick and family leave, free early childhood, primary and secondary education, minimum wages, and services for children and adults with disabilities, among others. These policies, if well implemented, allow the family caregivers time and economic stability to care for their children, and allow the children access to education and health services. Next to these broad social policies, some vulnerability-sensitive approaches might be necessary, depending on the context. 

By: Doortje 't Hart - Senior Advisor Children & AIDS at STOP AIDS NOW!

This article was published in the STOP AIDS NOW! Children and AIDS e-news May 2016