Background There is a lack of integrated services for childhood neurodisability in Northern India.
Methods A Child Development Centre was set up by UK-trained Paediatricians to understand existing problems, plan new interventions and compare outcomes. Children with a diagnosis of neurodisability (developmental delay, behaviour issues and learning problems) were eligible. Children with blindness, deafness, severe quadriplegia and progressive neurological disorders were excluded.
This study was conducted in 2 phases (table 1). In phase 1 (November 2014-November 2016) children were treated using existing interventions led by therapists. Problems were identified and an intervention programme based on developmental decoding and home-based environmental modification was developed and piloted in Phase 2 (December 2016 onwards).
Problems: phase 1
Lack of integrated services.
Delayed diagnosis and lack of individualised support after diagnosis.
Independent therapists working in isolation.
Inadequate parental counselling and support. Parents expecting ‘magic cure’. High drop out rate.
Changes for phase 2
Interventions based on Griffith’s 3 developmental assessment and modified based on diagnosis and individual profile. An interventional algorithm (software) was developed which provided individualised intervention plans, monitored child’s progress and parental compliance.
All children work towards functional goals. Final (long-term) goals broken into levels(short-term goals).
Use of multimedia for parental counselling.
Parental training for home environment modification.
Marked improvement in target progress and decline in dropout rate was noted.
Parents felt motivated and empowered.
Developmental decoding and environmental modification have shown promising results in the management of childhood neuro-disability across a diaspora of diagnosis.
Information technology was useful in implementation.
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