Aim An estimated 8.4 million newborns annually experience perinatal complications, with possible life-long consequences for their health, development and life chances. This study aimed to develop and evaluate a facilitated, participatory early intervention (EI) programme for infants at high-risk of neurodisability and examine its feasibility, acceptability and impact on child and family quality of life (QoL).

Methods A 10-modular EI programme was developed, adapted from an established programme for older children and supported by an Expert Advisory Group including local parents, Disabled Persons Organisations and experts in early intervention and child development. Term-born survivors of neonatal encephalopathy were assessed 6 months after birth using the Griffiths Mental Developmental Scales and the Hammersmith Infant Neurological Examination (HINE). Infants with moderate or severe neurodevelopmental impairment (developmental quotient <70, and/or HINE score <60), were eligible to enter the EI programme. A pre and post intervention mixed-methods evaluation was conducted to ensure fast-cycle learning and inform continued programme development. Paediatric QoL inventory tools (PedsQL, Family Impact Module) quantitatively assessed changes in family QoL. Wilcoxon signed-rank tests allowing for paired data were used to compare pre and post intervention scores. Feasibility, acceptability and impact on family QoL were evaluated using small group and individual in-depth interviews among recruited care-givers, programme facilitators and study staff.

Results Of 112 encephalopathy survivors, 35 were eligible to enter the EI Programme (mean age 6.62 months (SD 0.645)). Of these, 28 completed the programme (mean attendance 8.7 modules (range, 7–10)) and subsequent evaluation. Total PedsQL score significantly increased between preand post-intervention (median change +15.6, p=0.001). Significant improvements in QoL were seen in emotional functioning (+30.0, p=0.0002), worry (+22.5, p=0.002), physical functioning (+14.6, p=0.034) and communication (+12.5, p=0.014). Qualitatively, the programme was found to be acceptable to care-givers and facilitators. Care-givers reported increased knowledge, improved family relationships, reduced self-stigma, raised hope and enhanced emotional wellbeing.

Conclusion Evaluation of a modular facilitated, participatory EI programme for infants at high-risk of neurodisability showed significant improvements in family QoL and was feasible and acceptable in this urban Ugandan facility-based setting. Follow-up is underway to assess longer-term impact of the EI programme on QoL.