BackgroundNeonatal encephalopathy (NE) is a leading cause of global child mortality. Survivor outcomes in low-resource settings are poorly described. We present early childhood outcomes after NE in Uganda.MethodsWe conducted a prospective cohort study of term-born infants with NE (n = 210) and a comparison group of term non-encephalopathic (non-NE) infants (n = 409), assessing neurodevelopmental impairment (NDI) and growth at 27–30 months. Relationships between early clinical parameters and later outcomes were summarised using risk ratios (RR).FindingsMortality by 27–30 months was 40·3% after NE and 3·8% in non-NE infants. Impairment-free survival occurred in 41·6% after NE and 98·7% of non-NE infants. Amongst NE survivors, 29·3% had NDI including 19·0% with cerebral palsy (CP), commonly bilateral spastic CP (64%); 10·3% had global developmental delay (GDD) without CP. CP was frequently associated with childhood seizures, vision and hearing loss and mortality. NDI was commonly associated with undernutrition (44·1% Z-score < − 2) and microcephaly (32·4% Z-score < − 2). Motor function scores were reduced in NE survivors without CP/GDD compared to non-NE infants (median difference − 8·2 (95% confidence interval; − 13·0, − 3·7)). Neonatal clinical seizures (RR 4.1(2.0–8.7)), abnormalities on cranial ultrasound, (RR 7.0(3.8–16.3), nasogastric feeding at discharge (RR 3·6(2·1–6·1)), and small head circumference at one year (Z-score < − 2, RR 4·9(2·9–5·6)) increased the risk of NDI.InterpretationIn this sub-Saharan African population, death and neurodevelopmental disability after NE were common. CP was associated with sensorineural impairment, malnutrition, seizures and high mortality by 2 years. Early clinical parameters predicted impairment outcomes.

Purpose: The study investigated maternal experiences of caring for a child affected by neurological impairment after neonatal encephalopathy (NE) (“birth asphyxia”) in Uganda. Methods: Between September 2011 and October 2012 small group and one-on-one in-depths interviews were conducted with mothers recruited to the ABAaNA study examining outcomes from NE in Mulago hospital, Kampala. Data were analysed thematically with the aid of Nvivo 8 software. Findings: Mothers reported caring for an infant with impairment was often complicated by substantial social, emotional and financial difficulties and stigma. High levels of emotional distress, feelings of social isolation and fearfulness about the future were described. Maternal health-seeking ability was exacerbated by high transport costs, lack of paternal support and poor availability of rehabilitation and counselling services. Meeting and sharing experiences with similarly affected mothers was associated with more positive maternal caring experiences. Conclusion: Mothering a child with neurological impairment after NE is emotionally, physically and financially challenging but this may be partly mitigated by good social support and opportunities to share caring experiences with similarly affected mothers. A facilitated, participatory, community-based approach to rehabilitation training may have important impacts on maximising participation and improving the quality of life of affected mothers and infants.Implications for RehabilitationCaring for an infant with neurological impairment after NE in Uganda has substantial emotional, social and financial impacts on families and is associated with high levels of emotional stress, feelings of isolation and stigma amongst mothers.Improved social support and the opportunity to share experiences with other similarly affected mothers are associated with a more positive maternal caring experience. High transport costs, lack of paternal support and poor availability of counselling and support services were barriers to maternal healthcare seeking.Studies examining the feasibility, acceptability and impact of early intervention programmes are warranted to maximise participation and improve the quality of life for affected mothers and their infants.

Background Early support for children with developmental disabilities is crucial but frequently unavailable in low-resource settings. We conducted a mixed-methods evaluation to assess the feasibility, acceptability, and impact of a programme of early detection and intervention for young children with developmental disabilities in Western Uganda. Methods Early child development training for healthcare workers (HCWs) was implemented in three rural districts, and attendance was tracked. HCW knowledge and confidence were assessed pre-/post-intervention, and referral numbers tracked to evaluate impact. Facilitators were trained and mentored to deliver a participatory, group, early intervention programme (EIP) for young children with developmental disabilities and their families. Facilitators were tracked as they were identified, trained, and delivered the intervention, and attendance of families was tracked. Pre−/post-intervention assessments evaluated changes in family quality of life (PedsQL 2.0, Family Impact Module), and child nutritional outcomes. Focus group discussions with stakeholders also assessed feasibility, acceptability and impact. Results Overall, 93 HCWs from 45 healthcare facilities received training. In the pre−/post-evaluation, median knowledge and confidence scores increased significantly (from 4.0 to 7.0 and from 2.7 to 4.7, respectively (p < 0.001)). HCWs reported feeling empowered to refer and offer care for families with a young child with disability. Referral rates increased significantly from 148 to 251 per annum (70%; p = 0.03). Eleven EIP facilitators were trained, and all delivered the intervention; 84 families were enrolled, of which 78% attended at least 6 out of 10 modules. Amongst those with paired pre−/post-intervention data (n = 48), total family quality of life scores increased significantly (21%, p < 0.001). Improvements were seen across all domains of quality of life, with the largest impacts on emotional functioning and social functioning (p < 0.001). The programme was acceptable to caregivers and facilitators. Caregivers reported improved knowledge, family relationships, hope, emotional wellbeing, and reduced self-stigma. Conclusions A programme of early detection and intervention for children with early developmental disabilities and their families was feasible and acceptable in a rural community-based Ugandan setting. HCW training positively impacted knowledge, confidence, attitudes, and referral rates. Families enrolled to the EIP reported significant improvements in quality of life. Important programmatic barriers identified included geographical spread, poverty, gender inequality, and stigma.

Global attention on early child development, inclusive of those with disability, has the potential to translate into improved action for the millions of children with developmental disability living in low-and middle-income countries. Nurturing care is crucial for all children, arguably even more so for children with developmental disability. A high proportion of survivors of neonatal conditions such as prematurity and neonatal encephalopathy are affected by early child developmental disability. The first thousand days of life is a critical period for neuroplasticity and an important window of opportunity for interventions, which maximize developmental potential and other outcomes. Since 2010, our group has been examining predictors, outcomes, and experiences of neonatal encephalopathy in Uganda. The need for an early child intervention

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.

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Background: Early support for children with developmental disabilities is crucial but frequently unavailable in low-resource settings. We conducted a mixed-methods evaluation to assess the feasibility, acceptability, and impact of a programme of early detection and intervention for young children with developmental disabilities in Western Uganda. Methods: Early child development training for healthcare workers (HCWs) was implemented in three rural districts, and attendance was tracked. HCW knowledge and confidence were assessed pre-/post-training, and referral numbers tracked to evaluate impact. Facilitators were trained and mentored to deliver a participatory, group, early intervention programme (EIP) for young children with developmental disabilities and their families. Facilitators were tracked as they were identified, trained, and delivered the intervention, and attendance of families was tracked. Pre-/post-intervention assessments evaluated changes in family quality of life (PedsQL 2.0, Family Impact Module), and child nutritional outcomes. Focus group discussions with stakeholders also assessed feasibility, acceptability and impact.Results: Overall, 93 HCWs from 45 healthcare facilities received training. In the pre-/post-evaluation, median knowledge and confidence scores increased significantly (from 4.0 to 7.0 and from 2.7 to 4.7, respectively (p<0.001)). HCWs reported feeling empowered to refer and offer care for families with a young child with disability. Referral rates increased from 148 to 251 per annum (70%). Eleven EIP facilitators were trained, and all delivered the intervention; 84 families were enrolled, of which 78% attended at least 6 out of 10 modules. Amongst those with paired pre-/post-intervention data (n=48), total family quality of life scores increased significantly (21%, p<0.001). Improvements were seen across all domains of quality of life, with the largest impacts on emotional functioning and social functioning (p<0.001). The programme was acceptable to caregivers and facilitators. Caregivers reported improved knowledge, family relationships, hope, emotional wellbeing, and reduced self-stigma. Conclusions: A programme of early detection and intervention for children with early developmental disabilities and their families was feasible and acceptable in a rural community-based Ugandan setting. HCW training positively impacted knowledge, confidence, attitudes, and referral rates. Families enrolled to the EIP reported significant improvements in quality of life. Important programmatic barriers identified included geographical spread, poverty, gender inequality, and stigma.