Innovation summary

As in many low-income countries, the treatment gap for developmental disorders in rural Pakistan is near 100%. Many barriers to care exist for children with developmental delays, and conventional health services research has been unable to overcome diverse bottlenecks (e.g. lack of mental health professionals, chronic shortage of funds, weak health and social care systems, stigma attached to mental disorders, and a lack of political will). The innovation aims to reduce the burden of intellectual and developmental delays in children while empowering, organizing and training their families.

We adapted the WHO mhGAP-IG1 developmental disorders module and Parent-Skills Training (PST) program to manage children with developmental delays in community settings through non-specialists.  The goal is to make this package available at-scale to populations that have neither the means nor the expertise to deliver it.

We have integrated a number of innovations to meet the goals:

1) Social innovation (Family Networks): to establish networks of families with children with developmental delays within the community.

2) Technological innovations (Interactive Voice Response (IVR) for screening, Avatar Assisted Cascade Training (ACT), Mobile Information Management System (MIMS)): to standardize the intervention material and to use for the training and supervision of non-specialists.

3) Business innovation (Social franchise model): to make the model scalable and sustainable for the larger population. 

Impact summary

FaNs for Kids will be scaled up to a population of 1 million (about 3000 families and 500 volunteers). The anticipated impact is three-pronged:

a) Improved functioning and socio-emotional well-being of children

b) Reduced family stress and stigma

c) Increased family empowerment resulting in increased awareness and reduced stigma about the condition. The Family Networks will be empowered to advocate for better rights for these children (lobbying with public health and social care agencies for more opportunities to participate in education for the children and to provide better care).

The program includes a detailed economic evaluation including cost effectiveness analysis to inform scale-up and policy.

Innovation details

The WHO Mental Health Gap Action Program Intervention Guide (mhGAP-IG)1 for developmental disorders and Parent-Skills Training (PST) program for children with developmental delays was adapted to a technology platform—to ensure fidelity of intervention programme—for delivery by non-specialists in community settings.

Existing child mental health approaches rely on weak health or social care systems that are incapable of sustaining interventions at scale. The integrated innovative approach2 provides its own motivated human resource (trainers and volunteer champions) and culturally adapted technology-assisted implementation tools, and is potentially sustainable. The integrated innovative model includes:

1) Social innovation: organise an active, empowered group of family volunteers (champions) within the community who could be trained to provide WHO mhGAP interventions to their own children, and to cascade them down to other families in their villages.

 2) Technological innovations include:

  • An Interactive Voice Response (IVR) system to identify families with a developmental delays and volunteers;
  • Tablet-based application that used ‘real-life’ scenarios with the aid of ‘avatars’ (graphic images) to assist with training and supervision (Avatar Assisted Cascade Training)
  • An integrated assessment tool based on standardized WHO measurements (WHODAS Child) to monitor outcomes of the children and families and to provide ongoing supervision.

 3) Business innovation: social franchise model for rapid replication and scale-up.

For additional details on the innovation, refer to the research paper attached under Resources - "Model for service delivery for developmental disorders in low-income countries."

Key drivers

  • Community-based Family Networks to deliver evidence-based program
  • Task shifting to its most proximate level—empowering family members
  • Technological innovations to address implementation bottle necks such as identification in the community, training, supervision and monitoring
  • Social franchise model to rapid replication and scale up

Challenges

  • Long term engagement and motivation of family volunteers
  • Lack of coordination mechanism amongst public sector special education, health and social welfare departments

Continuation

The innovative model of service delivery for developmental delays has been recognized for its potential to address implementation bottlenecks in low income settings and has been awarded a transition to scale grant by Grand Challenges Canada. The match fund has been provided by Autism Speaks, USA and Human Development Research Foundation, Pakistan, to serve a population of one million in a rural sub-district of Pakistan.

The tech-assisted screening, assessment, training and supervision tool developed through Family Networks program is being applied in scaling up management of perinatal depression through the Thinking Healthy Program in Pakistan.

The field of mental health in low-income countries suffers from implementation bottlenecks, and the political will to invest in this area remains low despite the exponential increase in need. Innovative solutions from the social, technological, and business domains as illustrated in this program will need to be incorporated into the framework of implementation research to make scale-up of such mental health interventions a real possibility.

Partners

Funders

Evaluation methods

Effectiveness of the Family Networks program will be evaluated through a cluster randomized control trial in a sub district (30 Union Councils – a Union Council is the smallest administrative unit in Pakistan) with a population of approximately 1 million. Outcomes will be assessed at 6 months after the implementation of the program. Outcomes include WHO Disability Assessment Schedule for children (WHODAS-Child); Secondary outcomes include socio-emotional well-being of children, stigma and parental distress, quality of life, empowerment and utilization of health care services by the families.

A qualitative process evaluation will be conducted to evaluate the program delivery.

Cost of implementation

Cost effectiveness evaluation will be carried out at the end of the program as a part of economic evaluation. The program includes a detailed economic evaluation including cost effectiveness analysis to inform scale-up and policy.

Impact details

Anticipated impact:

  • Population of 1 million will be screened for children with developmental delays using IVR and a house-to-house survey with the help of lady health workers.
  • 500 champion family volunteers will be trained to provide this evidence-based intervention to their own children and to cascade it down to other families in their community.
  • 3000 children and their families will receive the program.

References

  1. World Health Organization. Mental Health Gap Action Program (mhGAP) intervention guide for mental, neurological and substance use disorders in non-specialized health settings. 2010. Available at: http://whqlibdoc.who.int/publications/2010/9789241548069_eng.pdf. 
  2. Grand Challenges Canada. Integrated innovation. 2010. Available at: www.grandchallenges.ca/wp-content/uploads/integratedinnovation_EN.pdf.

Research

Associates

Usman Hamdani
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Country

Pakistan

Affiliated organizations

Human Development Research Foundation

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