Pediatric HIV Care
Over 2 million infants and children are living with HIV globally, the vast majority infected at birth. These infants have at best a life-expectancy of 4-5 years without intervention. However, providing cost-effective care for HIV infected infants in resource-strapped sub-Saharan Africa has remained a significant challenge.
We believe that we can end AIDS by 2030. Ending AIDS will generate profound health and economic benefits globally. The African countries will see a significant increase in GDP and ensuring healthy lives and promoting well-being at all ages will put the world on the path to sustainable development as envisioned by the UN Sustainable Development goals for 2030. Our vision is to build AIDS free and sustainable communities . Our mission is to build families that are stronger and more self-reliant in taking care of their own health. To help make our mission a reality, the goals for this program are: (i) prevent new HIV infections, (ii) to provide high quality continuous care to HIV+ children so that they never delop AIDS, and (iii) provide training in HIV prevention and care to family members.
Our model of care is a unique community-based approach developed to take advantage of Africa's most valuable resource, its family network, to provide comprehensive care for HIV infected infants and children. This model was developed in partnership with MIT's D-Lab, and the Harvard School of Public Health. Our unique approach has resulted in our working with community members for the last 17 years and are now embedded in the community.
Our partners include Churches, larger foundations and corporations such as World Centric, who are committed to making our world more just and sustainable.
About Our Pediatric HIV Care Program
This program provides food, medicines and a package of life saving health care servcies to 450 HIV positive children living in an impoverished community in Lusaka, Zambia. The package of health care services includes regular home visits from a health worker/Nurse, monitoring of adherance to HIV medication, adherence training for older children, psychosocial counseling, and education in HIV prevention. Read here for more information about the various elements and mechanics of this program. In addition, family members are trained in caring for an HIV positive child. This ensures that the child is under the care of a trained caregiver 24/7. At this time all 450 children, including the 50 new children enrolled are stable in health. For 2020, our plan is to enroll an additional 50 HIV+ children to bring the total number of children under our care to 500. Read more about program impact in 2019, 2018, 2017, 2016 .
Using a tiered structure comprising of Family Care Givers, Community Care Assistants and a Project Nurse, our pediatric HIV care program delivers a package of critical services to HIV+ children at a low cost per child per year. Survival rates for children in our progam are over 95%. In the last 15 years, we have lost 19 children out of approximately 800 enrolled since inception; statistically, we could have lost many more as life expectancy for an HIV positive child at birth is only 4-5 years
At the heart of our pediatric HIV care model is the philosophy that everyone is a caregiver. We believe that an HIV+ child can be cared for at home by a trained family member under the supervision of a health care professional. Accordingly, family members are provided with training in caring for an HIV+ child. This ensures that the children are under the care of a trained caregiver 24/7. Trained family members can escalate care to a higher level as needed.
Power of Love's pediatric HIV care program was launched in 2004 in the Matero community of Lusaka, Zambia. Matero is one of the largest and poorest compounds in Lusaka with a population of approximately 275,000. This community has a high incidence of HIV, malaria, and tuberculosis, and an unemployment rate upwards of 60%. Most residents are poor and live on less than $2 per day, defined as extreme poverty by the UN. It is estimated that in Matero alone there are 5,000 HIV+ children who could benefit from our services. Here are stories of two children who have benefitted from this program.
In October 2019, we added 50 HIV+ children, so we now have 450 children under our care. Our goal for these children is that they never develop AIDS. Direct beneficiaries are 400 HIV+ children, and additional 2200 residents benefit indirectly as trained family members share their experiences with others in the community. To date we have trained over 950 women caregivers who share their knowledge about HIV prevention and care throughout the community. Read more about program impact in 2019, 2018, 2017, 2016.
All children are regularly tested for CD4 counts. Children on anti-retrovital therapy (ART) assisted in acquiring ARV medication from government clinics and their family members are enocuraged to go in for testing for HIV.
The Results of Pediatric HIV Care are Undeniable
- With better health, children miss fewer days at school. In addtion, primary caregivers (most are grandmothers caring for multiple children) have more time available to work and provide better care for their families.
- With regulat health check-ups, their medical history is documented and available in case of a health emergency. Health care workers record the child's weight, height, BP, oxygenation. In addition, they disscuss infections/complaints, and provide advice on how best to take care of the child. An electronic record of the health visit is maintained.
- Older children are provided with education on HIV prevention.
- Of the total more than 950 children enrolled since inception, we have lost 19. With life expectancy at birth for HIV positive infants at only 4-5 years, a survival rate of over 95% demonstrates the efficacy of the program.
- As caregivers (grandmothers/great aunts/mothers) see for themselves the positive effects of medicines, they come forward for HIV testing, which is critical in prevention and spread of HIV. To date, more than 950 caregivers have come forward for voluntary testing.
- Children who are undernourished or malnourished receive a high protein soya supplement that goes a long way in improving their health.
- With mor eopen discussions about HIV, there is a reduction in the stigma asssociated with this disease.
- Caregivers of children are encouraged to apply for a microloan to start a small business. Earnings from these businesses go a long way in helping to pay for food, medicines, rent and school expenses.
Power of Love's pediatric HIV care model was developed, with the help of the Harvard School of Public Health in 2004. This model of care consists of a network of community health workers and medical professionals who provide HIV+ children with high quality healthcare services as close to home as possible.
This model of pediatric HIV care offers a solution to both the shortage of trained health care professionals, and the over-burdening of government clinics. Our program is unique because it puts the ownership of caring for HIV+ children back into the home. Not only does our model of care equip family members with the skills they need to provide care to HIV+ children, it also significantly reduces the cost of operations.
This model multi-tiered, starting in the home with the caregivers themselves and leading up to medical professionals. Health professionals at each level are trained to provide medical care and to quickly escalate care to the next higher level.
Level 1 - Family Caregivers (FCGs)
Family care givers are the primary caregivers (a majority are grandmothers caring for multiple children) of children. Before the child is enrolled, FCG's are trained in basic hygiene, HIV care and prevention. This training program was developed with the help of the Harvard School of Public Health and is especially designed for women caregivers in Zambia. The goal of this training is equip the women to take better care of their HIV+ children and other family members. Ongoing education is provided to FCG’s via bi-monthly refresher sessions. In addition to HIV, AIDS and malaria education, FCGs are taught simple yet effective responses to common opportunistic infections, such as chronic diarrhea, fever, and cough. They are trained in the maintenance of good hygiene and nutrition to prevent infections and strengthen the immune system. Monthly support meetings are also available to FCGs, giving them an opportunity to improve their knowledge about HIV, and to encourage them to get tested for HIV.
Level 2 - Community Care Assistants (CCAs)
At this level, trained health care workers provide medical care specific to HIV, particularly in the identification and treatment of opportunistic infections.
Community care workers (CCA’s) are trained in an intensive 8-week workshop, followed by monthly daylong refresher sessions. The refresher sessions allow the CCA’s to reinforce their existing skills, reflect on and address challenges encountered in the community, and acquire knowledge on new areas relevant to their practice. CCA’s supervise up to 100 patients each. They visit each child in his/her home regularly, during which they supervise the care provided by FCGs, oversee treatment adherence, and counsel the patient and the family member. During these home visits CCA’s check for early symptoms of illnesses that may require further medical attention, and refer the child to the Nurse as needed. Since our CCA’s live in same community and attend the same churches, they have a good understanding of the challenges faced by beneficiary families.
Level 3 - Project Nurses
Our fully trained and certified nurse meets regularly with the CCAs to review patient records and visits each child at least once a month. As per Zambian regulations for community-based healthcare, Project Nurses make final diagnoses and referrals and prescribe treatment courses. Each nurse can dispense medication for common opportunistic infections and provide professional care that cannot be provided by community health workers. If the child’s case is serious, the nurse takes the child to a doctor/hospital for further treatment.
For 2020, our plan is to:
- Provide clean cooking stoves to families. These stoves will improve health (by reduced smoke inhalation), reduce fuel costs, and can be used as an income generating asset.
- Add 50 children to bring the total number of children under our care to 500.
- Launch a community wide adherence program for adolescents and young adults (ages 14-24), as adherence rates are lowest for these age groups.
- Ensure all 450 HIV+ children are healthy and in school.
- Monitor the academic progress of 150 children provided with school support.
- Track graduates and encourage them to volunteer as mentors.
- Continue to target zero new HIV infections with PMTCT intervention.
- Expand the skill set of community members via education and training programs.
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