Family Networks to improve outcomes in children with developmental disorders: The FaNs for Kids Project
University of Liverpool, UK; Institute of Psychiatry, Rawalpindi, Pakistan; National Program for Family Planning and Basic Health, Pakistan; Pindico LLC, Pakistan
Improving children’s access to evidence-based care in low- and middle-income countries. Developmental disorders in children, including intellectual disability and pervasive developmental disorders such as autism, are one of the priority conditions included in the WHO’s mental health Gap Action Programme. However, a lack of awareness amongst families, the stigma associated with the conditions and the lack of trained human resource, remain insurmountable barriers to care in most low income countries. The purpose of The FaNs for Kids project is to reduce the burden of developmental disorders and related stigma in children and their families in low-income countries through our innovative approach of developing, supporting and sustaining Family Networks.
The project aims to explore a model of care-delivery for developmental disorders in children, whereby family members of many affected individuals (called Family Networkers or FaNs) will be organized and trained to form an active, empowered group (Family Networks) within the community that- a) works to reduce the stigma associated with the condition; b) using a task-sharing approach, work with community health workers (CHWs) to provide mhGAP interventions (most of which are family-led); c) support each other, with the more experienced FaNs providing peer-supervision and training to newer FaNs; and d) using a ‘cascade’ model, be supported by, and in turn support, the governmental and charitable sectors, working for such children, in order to make FaNs project viable and sustainable. We intend to explore the use of Information Technology (IT) and mobile phone technology to sustain such a network, with the more specialized and trained workers providing support to other FaNs through mobile phone assisted technology. Our project extends the concept of peer-peer support, used successfully with chronic conditions such as diabetes care, to build and sustain networks that task-share, support each other, and link with other agencies to maximize their impact.
In this project, we will complete a Development Phase by adapting the mhGAP interventions for delivery by family members; and a Feasibility and Piloting phase in which we will explore the necessary conditions for establishing Family Networks in the rural setting; and then piloting our task-sharing model of intervention delivery. This will inform plans for scaling up the intervention and carrying out a definitive evaluation with longer follow-up.