P04 Developing an early intervention programme for children at high-risk of neurodevelopmental impairment in uganda

Abstract

AimAn 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).MethodsA 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.ResultsOf 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.ConclusionEvaluation 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.

Development and assessment of the feasibility of a Zika family support programme: a study protocol

“…The Family Support Programme is based on the existing structure of GTKCP 23 and the EIP 24 , as no other relevant interventions for this target group were identified. Findings from the needs assessment, described above, were used to adapt the programme to meet the specified and identified needs of caregivers of children with CZS in Brazil and gaps in services (May–July, 2017).…”

“…In Ghana, an evaluation showed that the programme was positively received by families and had a positive impact on both quality of life and knowledge and confidence of caregivers of children with CP, as well as the reported physical and emotional health of the child 23 . The programme was originally designed for children of age 2 and over, and a recent adaptation has been piloted in Uganda for children under 2, the Early Intervention Programme (EIP), and is currently being clinically trialled 24 .…”

Juntos: A Support Program for Families Impacted by Congenital Zika Syndrome in Brazil

“…15,16 GTKCP focuses on parents of children aged 2 years and older; a new version, the Early Intervention Program (EIP), was developed for parents of children aged younger than 2 years. 17 Program material is available from www.ubuntu-hub.org.…”

Congenital Zika Syndrome—Assessing the Need for a Family Support Programme in Brazil

“…By targeting the caregivers, the programme aims to have an impact on the long-term health, wellbeing, and participation of children with cerebral palsy. An Early Intervention Programme (EIP) has also been developed from GTKCP to address the needs of younger infants [17]. Considering the commonalities of CZS and CP, it may be plausible to use existing CP programmes as the basis for new interventions.…”