Early Intervention for Children at High Risk of Developmental Disability in Low- and Middle-Income Countries:A Narrative Review

In low- and middle-income countries (LMICs), while neonatal mortality has fallen, the number of children under five with developmental disability remains unchanged. The first thousand days are a critical window for brain development, when interventions are particularly effective. Early Childhood Interventions (ECI) are supported by scientific, human rights, human capital and programmatic rationales. In high-income countries, it is recommended that ECI for high-risk infants start in the neonatal period, and specialised interventions for children with developmental disabilities as early as three months of age; more data is needed on the timing of ECI in LMICs. Emerging evidence supports community-based ECI which focus on peer support, responsive caregiving and preventing secondary morbidities. A combination of individual home visits and community-based groups are likely the best strategy for the delivery of ECI, but more evidence is needed to form strong recommendations, particularly on the dosage of interventions. More data on content, impact and implementation of ECI in LMICs for high-risk infants are urgently needed. The development of ECI for high-risk groups will build on universal early child development best practice but will likely require tailoring to local contexts

Maternal experiences of caring for an infant with neurological impairment after neonatal encephalopathy in Uganda: a qualitative study.

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 Rehabilitation Caring 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

Correction: Rating early child development outcome measurement tools for routine health programme use.

The authors would like to correct the funding statement. Currently it reads as 'Funding: This supplement has been made possible by funding support from the Bernard van Leer Foundation. Saving Brains impact and process evaluation funded by Grand Challenges Canada.' This funding statement is correct for all the other papers in the series but for this specific paper a key funder (Children's Investment Fund Foundation) was not listed, and Grand Challenges Canada should not be listed. The correct funding statement should be as follows: 'Funding: This supplement has been made possible by funding support from the Bernard van Leer Foundation (funding costs of publication and launch) and the Children's Investment Foundation Fund (partial funding of author time (DB) and (JC) and funding for EN-SMILING study)

Mid-upper arm circumference (MUAC) measurement usage among children with disabilities: A systematic review

Background: Anthropometric measurements, including mid-upper arm circumference (MUAC), are used for monitoring and evaluating children's nutritional status. Evidence is limited on optimal nutritional assessment for children with disabilities, who are at high risk for malnutrition. Aim: This study describes MUAC use among children with disabilities. Methods: Four databases (Embase, Global Health, Medline, and CINHAL) were searched from January 1990 through September 2021 using a predefined search strategy. Of the 305 publications screened, 32 papers were included. Data included children 6 months to 18 years old with disabilities. Data including general study characteristics, methods for MUAC measurement, terminology, and measurement references were extracted into Excel. Due to heterogeneity of the data, a narrative synthesis was used. Results: Studies from 24 countries indicate that MUAC is being used as part of nutritional assessment, but MUAC measurement methods, references, and cutoffs were inconsistent. Sixteen (50%) reported MUAC as a mean ± standard deviation (SD), 11 (34%) reported ranges or percentiles, 6 (19%) reported z-scores, and 4 (13%) used other methods. Fourteen (45%) studies included both MUAC and weight-for-height but nonstandard reporting limited comparability of the indicators for identifying those at risk of malnutrition. Conclusion: Although its speed, simplicity, and ease of use afford MUAC great potential for assessing children with disabilities, more research is needed to understand its appropriateness, and how it performs at identifying nutritionally high-risk children in comparison to other measures. Without validated inclusive measures to identify malnutrition and monitor growth and health, millions of children could have severe consequences for their development

Protocol for a randomised trial of early kangaroo mother care compared to standard care on survival of pre-stabilised preterm neonates in The Gambia (eKMC).

BACKGROUND: Complications of preterm birth cause more than 1 million deaths each year, mostly within the first day after birth (47%) and before full post-natal stabilisation. Kangaroo mother care (KMC), provided as continuous skin-to-skin contact for 18 h per day to fully stabilised neonates ≤ 2000 g, reduces mortality by 36-51% at discharge or term-corrected age compared with incubator care. The mortality effect of starting continuous KMC before stabilisation is a priority evidence gap, which we aim to investigate in the eKMC trial, with a secondary aim of understanding mechanisms, particularly for infection prevention. METHODS: We will conduct a single-site, non-blinded, individually randomised, controlled trial comparing two parallel groups to either early (within 24 h of admission) continuous KMC or standard care on incubator or radiant heater with KMC when clinically stable at > 24 h of admission. Eligible neonates (n = 392) are hospitalised singletons or twins < 2000 g and 1-24 h old at screening who are mild to moderately unstable as per a trial definition using cardio-respiratory parameters. Randomisation is stratified by weight category (< 1200 g; ≥ 1200 g) and in random permuted blocks of varying sizes with allocation of twins to the same arm. Participants are followed up to 28 ± 5 days of age with regular inpatient assessments plus criteria-led review in the event of clinical deterioration. The primary outcome is all-cause neonatal mortality by age 28 days. Secondary outcomes include the time to death, cardio-respiratory stability, hypothermia, exclusive breastfeeding at discharge, weight gain at age 28 days, clinically suspected infection (age 3 to 28 days), intestinal carriage of extended-spectrum beta-lactamase producing (ESBL) Klebsiella pneumoniae (age 28 days), and duration of the hospital stay. Intention-to-treat analysis will be applied for all outcomes, adjusting for twin gestation. DISCUSSION: This is one of the first clinical trials to examine the KMC mortality effect in a pre-stabilised preterm population. Our findings will contribute to the global evidence base in addition to providing insights into the infection prevention mechanisms and safety of using this established intervention for the most vulnerable neonatal population. TRIAL REGISTRATION: ClinicalTrials.gov NCT03555981. Submitted 8 May 2018 and registered 14 June 2018. Prospectively registered

Mid-upper arm circumference (MUAC) measurement usage among children with disabilities: A systematic review

Background: Anthropometric measurements, including mid-upper arm circumference (MUAC), are used for monitoring and evaluating children's nutritional status. Evidence is limited on optimal nutritional assessment for children with disabilities, who are at high risk for malnutrition. Aim: This study describes MUAC use among children with disabilities. Methods: Four databases (Embase, Global Health, Medline, and CINHAL) were searched from January 1990 through September 2021 using a predefined search strategy. Of the 305 publications screened, 32 papers were included. Data included children 6 months to 18 years old with disabilities. Data including general study characteristics, methods for MUAC measurement, terminology, and measurement references were extracted into Excel. Due to heterogeneity of the data, a narrative synthesis was used. Results: Studies from 24 countries indicate that MUAC is being used as part of nutritional assessment, but MUAC measurement methods, references, and cutoffs were inconsistent. Sixteen (50%) reported MUAC as a mean ± standard deviation (SD), 11 (34%) reported ranges or percentiles, 6 (19%) reported z-scores, and 4 (13%) used other methods. Fourteen (45%) studies included both MUAC and weight-for-height but nonstandard reporting limited comparability of the indicators for identifying those at risk of malnutrition. Conclusion: Although its speed, simplicity, and ease of use afford MUAC great potential for assessing children with disabilities, more research is needed to understand its appropriateness, and how it performs at identifying nutritionally high-risk children in comparison to other measures. Without validated inclusive measures to identify malnutrition and monitor growth and health, millions of children could have severe consequences for their development

Pattern of comorbidities in school-aged children with cerebral palsy in Cross River State, Nigeria.

BACKGROUND: To describe the pattern of comorbidities in school-aged children with cerebral palsy (CP) and to identify which, if any, were associated with poor school attendance. A cross-sectional study, using the key informant methodology, between December 2017 and July 2018 was conducted in Cross River State, Nigeria. Assessments, confirmation of CP and identification of systemic comorbidities using standard tools and questionnaires were performed. Children confirmed to have CP between the ages 4 to 15 years were included. RESULTS: Three hundred and eighty-eight children were confirmed to have CP, 59% males. The mean age was 9.2 years ± SD 4.0; 28% were non-ambulatory (gross motor function classification system (GMFCS) level IV-V) and spastic CP was seen in 70%. Comorbidities included Speech impairment 85%, feeding difficulties 86%, and swallowing difficulties 77%, learning difficulties 88%, abnormal behaviour 62%, visual acuity impairment 54%, objective perceptual visual disorders 46%, communication difficulties 45%, epilepsy 35%, hearing impairment 12% and malnutrition 51%. Learning difficulties (OR 10.1, p < 0.001; CI: 3.6-28.1), visual acuity impairment (OR 2.8, p = 0.002; CI: 1.5-5.3), epilepsy (OR 2.3, p = 0.009; CI:1.2-4.3) manual ability classification scale 4-5 (OR 4.7,p = 0.049; CI:1.0-22.2) and CP severity (GMFCS V-VI) OR 6.9 p = 0.002, CI: 2.0-24.0.) were seen as increasing the likelihood of poor school attendance. CONCLUSION: Comorbidities were common, and some were associated with limited school attendance. A multidisciplinary tailored approach to care, with application of available therapeutic interventions for comorbidities is suggested. This may be useful in reducing barriers to school attendance

Livelihood support for caregivers of children with developmental disabilities: findings from a scoping review and stakeholder survey

PURPOSE: Poverty amongst families with a child with disability adversely impacts child and family quality of life. We aimed to identify existing approaches to livelihood support for caregivers of children with developmental disabilities in low- and middle-income countries. METHODS: This mixed-method study incorporated a scoping literature review and online stakeholder survey. We utilised the World Health Organization community-based rehabilitation (CBR) matrix as a guiding framework for knowledge synthesis and descriptively analysed the included articles and survey responses. RESULTS: We included 11 peer-reviewed publications, 6 grey literature articles, and 49 survey responses from stakeholders working in 22 countries. Identified programmes reported direct and indirect strategies for livelihood support targeting multiple elements of the CBR matrix; particularly skills development, access to social protection measures, and self-employment; frequently in collaboration with specialist partners, and as one component of a wider intervention. Self-help groups were also common. No publications examined effectiveness of livelihood support approaches in mitigating poverty, with most describing observational studies at small scale. CONCLUSION: Whilst stakeholders describe a variety of direct and indirect approaches to livelihood support for caregivers of children with disabilities, there is a lack of published literature on content, process, and impact to inform future programme development and delivery

Core temperature after birth in babies with neonatal encephalopathy in a sub-Saharan African hospital setting.

KEY POINTS: Therapeutic hypothermia (HT) to 33.0-34.0°C for 72 h provides optimal therapy for infants with neonatal encephalopathy (NE) in high-resource settings. HT is not universally implemented in low- and middle-income countries as a result of both limited resources and evidence. Facilitated passive cooling, comprising infants being allowed to passively lower their body temperature in the days after birth, is an emerging practice in some West African neonatal units. In this observational study, we demonstrate that infants undergoing facilitated passive cooling in a neonatal unit in Accra, Ghana, achieve temperatures within the HT target range ∼20% of the 72 h. Depth of HT fluctuates and can be excessive, as well as not maintained, especially after 24 h. Sustained and deeper passive cooling was evident for severe NE and for those that died. It is important to prevent excessive cooling, to understand that severe NE babies cool more and to be aware of facilitated passive cooling with respect to the design of clinical trials in low- and mid-resource settings. ABSTRACT: Neonatal encephalopathy (NE) is a significant worldwide problem with the greatest burden in sub-Saharan Africa. Therapeutic hypothermia (HT), comprising the standard of care for infants with moderate-to-severe NE in settings with sophisticated intensive care, is not available to infants in many sub-Saharan African countries, including Ghana. We prospectively assessed the temperature response in relation to outcome in the 80 h after birth in a cohort of babies with NE undergoing 'facilitated passive cooling' at Korle Bu Teaching Hospital, Accra, Ghana. We hypothesized that NE infants demonstrate passive cooling. Thirteen infants (69% male) ≥36 weeks with moderate-to-severe NE were enrolled. Ambient mean ± SD temperature was 28.3 ± 0.7°C. Infant core temperature was 34.2 ± 1.2°C over the first 24 h and 35.0 ± 1.0°C over 80 h. Nadir mean temperature occurred at 15 h. Temperatures were within target range for HT with respect to 18 ± 14% of measurements within the first 72 h. Axillary temperature was 0.5 ± 0.2°C below core. Three infants died before discharge. Core temperature over 80 h for surviving infants was 35.3 ± 0.9°C and 33.96 ± 0.7°C for those that died (P = 0.043). Temperature profile negatively correlated with Thompson NE score on day 4 (r2  = 0.66): infants with a Thompson score of 0-6 had higher temperatures than those with a score of 7-15 (P = 0.021) and a score of 16+/deceased (P = 0.007). More severe NE was associated with lower core temperatures. Passive cooling is a physiological response after hypoxia-ischaemia; however, the potential neuroprotective effect of facilitated passive cooling is unknown. An awareness of facilitated passive cooling in babies with NE is important for the design of clinical trials of neuroprotection in low and mid resource settings