Supporting CHILDREN LIVING WITH HIV

To address the high numbers of HIV-infected children and low numbers receiving treatment, UNICEF, UNAIDS, USAID and other partners developed a global plan to increase life-saving strategies to eliminate new HIV infections in children, keep their mothers alive, and “achieve an AIDS-free generation by 2015.”  The global plan’s three goals are to:

1. Reduce new HIV infections among children by 90%, especially by eliminating mother- to-child transmission;
2. Reduce new infections among adolescents and young people by half;
3. Provide treatment and support for all children and adolescents affected by and living with HIV/AIDS. (3)

This page focuses on goal number 3 — support and treatment for all children and adolescents living with HIV and AIDS.

Background

While global strategies to eliminate mother to child transmission and treat HIV-positive mothers have made important progress in the last few years, many pregnant women in low and middle income countries are still unable to access treatment for their own health or to participate in PMTCT programs. The result is the continuation of far too many new infant infections and deaths.  In 2011, 230,000 children died from AIDS-related illness. (4)

It is critical to diagnose and treat newly infected infants in the first year of life, as close to 33 percent of HIV-infected infants will not survive without treatment. (5) Yet, mothers who are not enrolled in PMTCT programs are often unaware of their HIV status and their children may go undiagnosed until later in childhood.   As a result, there is an “urgent need for age-appropriate HIV testing and counseling for children and youth to identify those that remain undiagnosed.” (6)

Essential needs of children living with HIV

Children who were infected with HIV as infants often have different clinical needs from children or adolescents infected with HIV later in life. Children infected as infants are likely to be in a more advanced stage of HIV, to experience more opportunistic infections and may be more likely to have developmental or physical delays. Regardless of a child’s age when infected, both younger and older children and adolescents living with HIV need accessible, quality health services, psychosocial support and social protection.

Health support needs

Influences on child health outcomes actually begin well before birth, with a mother’s health (8) and prevention of mother-to-child transmission, and continue with safe breastfeeding practices, and fostering the developmental building blocks of healthy childhood.  Children born with HIV or infected during breastfeeding suffer from a range of health-related problems such as impaired immune systems and increased vulnerability to infections including diarrhea, pneumonia and tuberculosis (TB). (9)  Many HIV-infected children are particularly vulnerable to malnutrition, and require increased nutritional support in order to tolerate antiretroviral therapy and ensure that medication is effective. Frequent illness can result in the need to access palliative care for pain management, psychosocial support and improved quality of living.

Children who are born with HIV may also experience developmental or cognitive delays that affect their behavior, learning, and emotions.  Experiences during this early developmental stage affect children’s brain development and have life-long consequences on health, education and economic participation. Yet, in many countries, young children are mostly absent from the reach of clinical and community health and social service providers and they do not receive critical social and cognitive stimulation provided by early childhood development (ECD) programs.

The African Network for the Care of Children Affected by HIV/AIDS – (ANECCA)’s 2011 Handbook on Pediatric AIDS in Africa recommends a ten point package of comprehensive care for HIV-exposed and infected children.  Highlights from the ten point package support interventions that integrate both clinical services — determining a child’s HIV status at first contact, identifying and treating infections early, and providing appropriate treatment (e.g., cotrimoxazole, ARVs) based on national guidelines – and social services — providing families and children with ongoing community-based social and psychosocial support and ensuring that children, mothers and family members receive appropriate care, support and treatment.

The 2013 WHO consolidated guidelines on ART recommend starting ART for all children infected with HIV below age five.  Increasing treatment uptake to achieve an AIDS-free generation involves setting higher national targets for pediatric HIV testing and treatment and strengthening systems to expand early infant diagnosis, increase task shifting of pediatric ART and strengthen workforce capacity to provide optimal pediatric ART formulations. (11)  Recommendations and considerations for treating children under 10 can be found in the 2013 WHO guidelines.

Psychosocial support needs

Psychosocial support is critical for the health and development of children and adolescents living with HIV.  Children may face multiple stressors including illness or death of parents/caregivers, stigma and discrimination, issues related to HIV disclosure, isolation, and family instability. (12) Age-appropriate psychosocial support is critical for strengthening children’s coping abilities and emotional well-being.   Several studies suggest that the psychosocial well-being of children and their caregivers can also improve adherence to ART and clinical outcomes. (13)

Social protection support needs

Children living with HIV and their families need family-centered programs that link them to multiple, essential services including:  health, nutrition, education, economic strengthening, social- and child-protection, psychosocial support, palliative care, and shelter and care.   While family-centered, these services must also be tailored to children and adolescents’ specific developmental stage to provide age-appropriate interventions.

A family-centered treatment and support approach ideally offers children living with HIV access to integrated, comprehensive services in one place so all family members can be seen at the same time.  Not only does this approach help families save time and avoid multiple travel costs, it reduces the chances of mothers and children falling out of the system, after initial baby visits, and helps to keep clients coming back for long term support and treatment. Research indicates that ‘one stop,’ family-centered programs that include HIV and AIDS prevention, testing, care, and treatment for the whole family increase treatment uptake. (14)

Child Protection and economic strengthening to reduce poverty are also critical social protection measures for children living with HIV.  HIV-infected children are often at increased risk for violence, including gender-based violence neglect, abuse and loss of parental care.  Research from Uganda has shown that increasing family income to a certain level improved family relationships, reduced family violence, increased children’s school attendance, and empowered parents as providers. (15)  Social protection responses must account for different causes of vulnerability, contexts and poverty, and include a range of support policies and services (e.g., cash transfers, school block grants) that focus on family support, child protection and longer term livelihoods promotion.

Key messages and activities for supporting children living with HIV

1. Support children living with HIV to live with their families in a stable, nurturing environment.  Provide psychosocial support for parents and caregivers to improve their well-being and to adequately support the needs of children living with HIV.
2. Link families to food security and economic strengthening programs to assist with increased nutritional and financial needs.  Ensure AIDS-sensitive rather than AIDS-exclusive food support for all family members.
3. Promote family-centered care and treatment — integrated, comprehensive services for all family members in one place.
4. Follow WHO’s 2013 consolidated treatment guidelines and tailor HIV interventions, including care, treatment, and psychosocial support to children’s appropriate developmental stage.
5. Ensure prioritized, focused interventions address children’s most critical care needs, as outlined in the National Action Plan for Children in Adversity.
6. Link community-based orphans and vulnerable children’s programs with clinical PMTCT and ART programs to ensure that women, children and adolescents living with HIV and HIV-exposed infants can access essential health and social services. (16)
7. Strengthen systems and workforce capacity to scale up early diagnosis and pediatric care and treatment, particularly for infants and children at risk of dying without treatment.
8. Support Governments, Civil Society Organizations, and Communities to increase access and reduce barriers to all services along the continuum of care.
9. Link community-based groups (e.g., child protection committees, women’s groups, people living with HIV) and home-based care workers to programs that bring HIV-exposed and older children for HIV testing, immunizations and tuberculosis screening.
10. Integrate stigma-reduction activities into service provider training and strengthen counselors’ skills to provide psychosocial support that addresses stigma and barriers to service uptake among children living with HIV and their parents/caregivers.