Community-based Developmental Assessment & Intervention for HIV-Affected Children in Lima, Peru

Community-based Developmental Assessment & Intervention for HIV-Affected Children in Lima, Peru

Peru
Organization type: 
nonprofit/ngo/citizen sector
Budget: 
$1,000 - $10,000
Project Summary
Elevator Pitch

Concise Summary: Help us pitch this solution! Provide an explanation within 3-4 short sentences.

UNICEF estimates that 17.9% of all children were affected by HIV in 2009 among 24 countries surveyed, including approximately 16,600,000 orphans and 2,100,000 children living with HIV. The long-term individual and societal impact of HIV on these children will be determined by our ability to protect the well-being, development and security of this vulnerable population. Global literature clearly describes higher rates of neurodevelopmental delays among HIV-infected children compared with uninfected children. We seek to create a low-technology, high-impact, sustainable strategy that harnesses the workforce of community health workers to improve the long-term developmental outcomes of children affected by HIV in Peru and elsewhere.

About Project

Solution: What is the proposed solution? Please be specific!

1. Trained CHW's take on the screening and support roles traditionally done by psychologists. This "task-shifting" allows for high-quality intimate interaction in a poor urban setting where children are not regularly screened or treated for mental health disorders. Such an approach overcomes many barriers, including the limited number of specialized providers, the cost of travel, health services and lost work incurred by the family, physical challenges of providers and children that make frequent travel (often requiring an entire day) to medical appointments difficult, and fear of discrimination at health care centers. We have found that community health workers make care more effective and efficient while making it patient-centered and humane. 2. In Lima structural factors play an important role in determining one’s ability to seek care. By targeting children affected by HIV (and not just infected), we are trying to address the larger environmental and family characteristics that play a role in child development. We deliver an intervention that seeks to address multi-level influences associated with disease risk and poor health outcomes. 3. We are not aware of any programs using CBEI for HIV-affected families (targeting both infected and uninfected children, and providing mental health support to both children and their care providers) in any setting. Given the fact that our collaborators currently work in other resource-poor settings (including Botswana and Uganda), we aim to develop a model that could be adaptable beyond Peru.
Impact: How does it Work

Example: Walk us through a specific example(s) of how this solution makes a difference; include its primary activities.

Children affected by HIV (defined as a child who lives with at least one HIV-positive parent) may lack critical psycho-motor skills and are more likely to suffer from neurodevelopmental disorders (NDD's). These delays can be corrected if they are caught and treated early. However, if left untreated, these children will often have difficulty with social functioning and work productivity during their adult years. Effective screening and intervention strategies to reduce NDD's in HIV-affected children must combine core components of evidence-based early interventions with an understanding of how to foster sustained, nurturing parental behavior within the complex and unstable psychosocial environment of families living with HIV. Our collaborators at Children's Hospital have addressed NDD'S among HIV-affected children in the U.S. through early interventions focused on family and environmental stimulation at specialized centers of excellence. However, given limited human resources in resource-poor settings, such an approach would not be feasible in places with high rates of HIV; on the other hand, our group at SES has extensive experience in training community health workers to deliver sophisticated interventions to individuals in their communities. Drawing from these complementary areas of expertise, we propose to develop a community-based early intervention (CBEI) for impoverished HIV-affected families in Lima. HIV affected children ages 1-3 with NDD's will be identified by trained community health workers using standardized screening tools. Through a community-based participatory model, CHW's will receive training on early intervention techniques and then we will work collectively to design a four-month intervention which will deliver tailored teaching and support to HIV-affected families through home visits. Once piloted, our team will develop a training curriculum and CBEI manual for CHWs. The CBEI will consist of bi-weekly home visits for four months, in which “providers” (i.e. the parent or primary caregiver of the child) and children with NDD's will receive support from CHW's in the following areas. Activities will be tailored to the age and developmental needs of each child and selected with parents to maximize enjoyment between parent and child and enhance subsequent uptake in the home. 1) Child observation and knowledge sharing about child development and its relation to the child: Providers and CHW's will observe the child together and reflect collaboratively on the nature of the child’s behavior as it relates to general developmental expectations and to the child’s own emerging developmental skills. CHW's will engage in formal conversation with providers about general child development knowledge and about the child’s individual behaviors related to specific developmental domains. 2) Demonstration and initiation of ‘joint attention and reciprocal interaction activities’ tailored to child’s individual developmental profile: CHW's will encourage providers to engage in at least two developmentally-stimulating ‘joint attention and reciprocal interaction activities’ with their child for at least 15 minutes per activity. 3) Parent encouragement/empowerment: CHW's will review diaries, offer encouragement and praise for developmental interactions and share explicit information about how parents can improve the course of their child’s developmental progress. 4) Parent social support: At each session, CHWs will inquire about the primary provider’s welfare and needs, listen intently and offer referral assistance and reassurance. This support is meant to assist with concrete needs to reduce feelings of isolation, hopelessness and helplessness that accompany financial and psychosocial stressors.
About You
Organization:
Socios En Salud (SES)/ Partners In Health
About You
First Name

Maribel

Last Name

Munoz

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About Your Organization
Organization Name

Socios En Salud (SES)/ Partners In Health

Organization Phone

51 1 612 5200 (Peru)

Organization Address

Carabayllo, Lima, Peru

Organization Country

, LI

Country where this project is creating social impact

, LI

How long has your organization been operating?

More than 5 years

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Innovation
What stage is your project in?

Operating for 1‐5 years

Tell us about the community that you engage? eg. economic conditions, political structures, norms and values, demographic trends, history, and experience with engagement efforts.

The urban slums of Lima, where SES began and has its headquarters, is home to more than 4,500,000 people, including some of the region's poorest and most uprooted urban populations. Immigrants arrive daily in search of jobs and education – anything to earn a living. They settle in the dry, dusty hills, building unheated shacks in a swelling community served by only dirt roads and almost completely lacking in basic public utilities, such as water, electricity and sewage.

Our project takes place in Lima Este and Lima Ciudad which together comprise a contiguous health region with the highest incidence rates of HIV in Lima. In these areas, HIV-affected families face many barriers to health services, as well as food insecurity, HIV-related stigma and gender inequality. The precarious situation of these households is further stressed as family resources – both emotional and material – are poured into caring for the sickest family members. In addition to medical problems due to HIV and malnutrition, the developmental needs of these children (including parental affection, stimulation, care-giving, and schooling) go largely neglected.

The Peruvian Ministry of Health (MOH) provides free Highly Active Anti-retroviral Therapy (HAART) to adults and children, based on World Health Organization (WHO) guidelines. Available services include psychiatrists, psychologists, peer educators, mutual support groups and community-based resources, although professional mental health services are costly and basically inaccessible for the poor. Neither HIV-affected nor HIV-unaffected children are routinely screened for NDD's; therefore, only children with the most significant developmental delays are treated by psychologists and physical therapists at tertiary or secondary centers.

Share the story of the founder and what inspired the founder to start this project

Socios En Salud was founded to fight Multi-drug resistant tuberculosis (MDR TB) in Carabayllo, Peru in 1996 as Partner In Health's sister organization by a group of doctors at Harvard Medical School who had been working in rural Haiti. Drawn by the struggles of Father Jack Roussin, a close friend from Boston who became sick with TB and could not access proper treatment services, Dr. Paul Farmer and his team began treating MDR patients out of a little shack-like clinic in Carabayllo. Since then, Socios En Salud, working closely with the Peruvian MOH has successfully treated over 7,000 TB patients.

In 2004, the MOH asked SES to apply their community-based model for care to Peru's growing HIV epidemic. Since 2005, our dedicated team of community health nurses, psychologists, and health promoters have been delivering care and social support for HIV + families in the slums of Lima with the mission of providing a preferential option for care to the poor.

Today, we focus our actions on healthcare access as a right for excluded families and communities through action-based solidarity. Using community-based models, we work in Lima's poor neighborhoods doing whatever it takes to fight disease, poverty and injustice.

Social Impact
Please describe how your project has been successful and how that success is measured

To assess the impact of CBEI on parenting behavior, NDD and child well-being among our population, colleagues at Brigham and Women's Hospital's Division of Global Health Equity will compare changes from baseline in parenting behavior using scores from culturally adapted assessment tools. Changes will be assessed at 6 and 12 months (12 months is intended to assess for sustained effect). Based on global literature, we expect the most important factors mediating the impact of poverty on child development to be cognitive stimulation and parenting style. Analyses will be based on the "intention-to-treat" principle.

We will also report the cross-sectional prevalence of NDD among children receiving support, defined as those with “at risk” or “delayed” results using TEPSI/EEDP tool for identification of neurodevelopmental delays among infants. Averages (with standard deviations) of continuous total scores and subtest scores in each functional domain assessed, stratified by age (< 24 months, > 24 months) will be reported and assessed for impact by our Boston-based team. Process evaluation and monitoring will be undergone by SES evaluation team per protocol.

How many people have been impacted by your project?

How many people could be impacted by your project in the next three years?

1,001-10,000

Winning entries present a strong plan for how they will achieve growth. Identify your six-month milestone for growing your impact

SES will develop a manual and training materials for CHW-delivered CBEI. In addition, at six months, we will have delivered CBEI to at least 10 families with HIV-affected children.

Task 1

SES will develop a manual and training materials for CHW-delivered CBEI. In addition, at six months, we will have delivered CBEI to at least 10 families with HIV-affected children.

Task 2

Identification of HIV affected children with NDD's: SES field workers will strengthen collaboration with hospital and clinical staff and review clinical histories for eligible children and adults.

Task 3

Fidelity to CBEI intervention: SES program supervisors will monitor CHW's delivery of intervention for fidelity. Training will be given as needed.

Identify your 12-month impact milestone

Create flawless referral system with MOH clinical staff and SES programs, deliver CBEI to 30 children affected by HIV with NDD's ages 1-3 and evaluate the improvement in development post-intervention.

Task 1

Work closely to build and maintain partnerships with key hospitals who treat HIV + children in Lima. Make sure doctors are "on-board" and see the benefit of intervention in their patients.

Task 2

Fidelity to CBEI intervention: SES program supervisors will monitor CHW's screening and delivery of intervention for fidelity. Training will be given as needed.

Task 3

Evaluation: At 12 months, data gathered by CHW's about child's progress will be analyzed by SES evaluation team for quality in process and delivery.

How will your project evolve over the next three years?

First, we will work with local clinics, hospitals and regional and national government to adopt CBEI's for HIV-affected children into standard practice (including CHW and referral mechanism). The public sector's involvement will make our intervention more sustainable.

Over the final year our goal is to develop a similar integral, family-based intervention for children ages 3-5 that can be delivered in conjunction with this project. We anticipate a great need from brothers and sisters of children in this project, and recognize as children grow, developmental gaps lead to further barriers to health, education and well-being. We will also work with collaborators to generalize the training and intervention for other sites beyond Peru.

Sustainability
What barriers might hinder the success of your project and how do you plan to overcome them?

Possible barrier: Funding. Over three years, growing as projected, this project will need at least $200,000 to include training, travel for CHW's and patients, psychologist and community-nurse salaries, and monitoring and evaluation. Project is currently funded by excess SES money and pocket money of collaborators.

Solution: Currently, a small seed grant ($10,000) would bring this tiny project (i.e. 10 HIV-affected families) to a level where fidelity monitoring and evaluation can inform further scale-up (50 families).

Possible barrier: Political changes at the national and regional level can effect local leadership (ie directors of hospitals) as well as policy (HIV program's priorities). Giving HIV + children and adults access to family-based health services depends on MOH staff for identification of patients and referral, program staff will have to be attentive to these partnerships.

Solution: In 2004, MOH officials asked SES to help contain a growing HIV epidemic. After collaborating with MOH staff at every level for 15 years, SES personnel have learned how to gain support for our projects while incorporating input and creating lasting partnerships. One key strength is the Director of HIV program at Hospital de Nino (Children's Hospital- main referral hospital for kids with HIV) helped design and manage this project.

Tell us about your partnerships

Our partnerships make this project possible. Psychological and pediatric expertise comes from partnerships with Children's Hospital in Boston, as well as Boston Medical Center and the SPARK Center, which services the mental health and development needs of the pediatric HIV/AIDS community in Boston. Local clinical knowledge/ direction comes from Hospital del Nino (Children's Hospital) in Lima. Programmatic implementation support comes from SES's team in Lima with over 5 years of experience working with families living with HIV. CHW's all have experience working in our projects and live in the same neighborhoods as our patients.

Explain your selections

In order to get this project off the ground, a small amount of funding, as well as other human and material resources, are being donated by SES and US collaborator's personal funds.

How do you plan to strengthen your project in the next three years?

Research and program projects at SES ensure MOH partnerships maintain their strength. SES has a strong reputation among patients and clinical staff and their projects are widely supported overall. Like other projects we have worked on, this will be scaled up as funding becomes available. Common objectives, such as integral HIV/AIDS treatment adherence support, psychosocial support, material support, and policy work will continue to be promoted by SES colleagues. SES staff are acutely aware of the need for an early child intervention for developmental delays among our population which helps create and maintain energy for the project.

Challenges
Which barriers to health and well-being does your innovation address?
Please select up to three in order of relevancy to your project.

PRIMARY

Limited diagnosis/detection of diseases

SECONDARY

Lack of affordable care

TERTIARY

Lack of physical access to care/lack of facilities

Please describe how your innovation specifically tackles the barriers listed above.

Limited diagnosis/ detection of diseases: While children exposed to HIV living in poor areas of Lima often fall through the cracks for HIV screening, almost none are screened for any kind of developmental disorder except in extremely severe cases. Even fewer children affected but not infected by HIV receive mental health screening or support. Our program identifies children early while they still have time to catch up.

Lack of affordable care: Community-based services by SES are free for patients. (Psychology services in Lima are forbiddingly expensive.) SES can provide this by delivering high-quality home-based service with CHW's.

Lack of physical access to care: Patient homes are high in Lima's surrounding slums. CHW's travel to each patient's home to deliver CBEI.

How are you growing the impact of your organization or initiative?
Please select up to three potential pathways in order of relevancy to you.

PRIMARY

SECONDARY

Enhanced existing impact through addition of complementary services

TERTIARY

Grown geographic reach: Global

Please describe which of your growth activities are current or planned for the immediate future.

Our first objective is to effect public health policy in Peru so family-based early interventions for NDD's are provided to young children affected by HIV through the public sector via the Ministry of Health.

Our second objective is to provide family-based services for older children. We initially chose 1-3 yr olds because intervention could be most effective given child's brain development and because role of family is most important before school begins. However, the need is great throughout infancy and youth.

In the long term (5 years or so) we will draw on country-to-country collaboration, where members of Peru-based team could train and share during trips to Botswana and vice versa.

Do you collaborate with any of the following: (Check all that apply)

Government, NGOs/Nonprofits, Academia/universities.

If yes, how have these collaborations helped your innovation to succeed?

SES is part of a three-tier close collaboration between Harvard Medical School's Department of Global Health and Social Medicine, not-for-profit Brigham and Women's Hospital and Boston-based NGO Partners In Health. Through research we identify needs which inform our service. Training brings volunteers to Lima with creative thinking and energy for change. Long-standing government support through the HIV Initiative and among pediatricians at Hospital del Nino (Children's Hospital) bring their clinical impressions and intimacy with local population to our work.