Cerebral palsy in African paediatric populations: A scoping review.

AIM: To review the epidemiology and outcomes of African children with cerebral palsy (CP) over a 21-year period. METHOD: The PubMed, Scopus, and Web of Science online databases were searched for original research on African children with CP aged 18 years and younger published from 2000 to 2021. RESULTS: A total of 1811 articles underwent review against explicit criteria; 93 articles were selected for inclusion in the scoping review. The reported prevalence of CP ranged from 0.8 to 10 per 1000 children. Almost half had perinatal risk factors, but up to 26% had no identifiable risk factor. At least one-third of children with CP had one or more comorbidities, most commonly epilepsy, intellectual disability, and malnutrition. African children with CP demonstrated excess premature mortality approximately 25 times that of the general population, predominantly from infections. Hospital-based and younger populations had larger proportions of children with severe impairments. African children with CP had inadequate access to care and education, yet showed functional improvements compared to controls for all evaluated interventions. INTERPRETATION: The prevalence of CP in Africa remains uncertain. African children with CP have different risk profiles, greater premature mortality, and more severe functional impairments and comorbidities compared to the Global North. Several barriers prevent access to optimal care. Larger African studies on validated and effective interventions are needed.

Managing mothers' and fathers' uncertainty during their journey through early neurodevelopmental follow-up for their high-risk infants-A qualitative account.

BACKGROUND: Early diagnosis of cerebral palsy is possible by 5 months corrected age for 'at-risk' infants, using diagnostic tools such as the Hammersmith Infant Neurological Examination (HINE), Prechtl's General Movements Assessment (GMA) and magnetic resonance imaging (MRI). This is an uncertain and stressful time for parents where provision of appropriate information and support is essential. AIM: To explore parents' views and experiences in relation to the new early neurodevelopmental follow-up of 'at-risk' infants. METHODS: Thirteen in-depth one-to-one qualitative interviews were conducted by the primary researcher, with eight parents (six mothers and two fathers) of 'at-risk' infants eligible for a follow-up clinic where the GMA and HINE were performed at 12-week corrected age. Interviews used a pre-piloted topic guide and took place before and after the clinic. Interviews were audio-recorded, transcribed verbatim and analysed using inductive coding and thematic analysis using the framework approach. FINDINGS: Seven themes were identified: (1) attempting to manage uncertainty, (2) taking priority, (3) trusting professionals, (4) independence in the parent role, (5) feeling understood, (6) patterns of care and (7) individuality. Parents reported experiencing uncertainty about their current situation and future. Adequate preparation for and timing of information are vital. When uncertainty is poorly managed, parents' wellbeing suffers. Individual parents' perspectives and infants' developmental trajectories differ, and information should be tailored specifically for this. CONCLUSION: A parent's understanding of the journey through neurodevelopmental care for their high risk infants is initially very limited. Implementing a counselling service for parents to access psychological support and digital reminder system for clinic appointments, as well as providing more tailored information through trusted professionals, could all improve future parents' experiences.

Understanding modifiable caregiver factors contributing to child development among young children in rural Malawi.

This study examined modifiable caregiver factors influencing child development in Malawi using baseline data from 1,021 mothers and their children <2 years of age participating in a cluster-randomized controlled trial implemented in rural Malawi (2022-2025). We fit an evidence-based theoretical model using structural equation modelling examining four caregiver factors: (1) diet diversity (sum of food groups consumed in the past 24 h), (2) empowerment (assessed using the project-level Women's Empowerment in Agriculture Index), (3) mental health (assessed using the Self-Reported Questionnaire, SRQ-20), and (4) stimulation (number of stimulation activities the mother engaged in the past 3 days). Child development was assessed using the Malawi Development Assessment Tool (norm-referenced aggregate Z-score). The model controlled for child, caregiver, and household socioeconomic characteristics. Results showed that caregiver dietary diversity was directly associated with higher child development scores (standardized coefficient 0.091 [95% CI 0.027, 0.153]) and lower SRQ-20 scores -0.058 (-0.111, -0.006). Empowerment was directly associated with higher child development scores (0.071 [0.007, 0.133]), higher stimulation score (0.074 [0.013, 0.140]), higher dietary diversity (0.085 [0.016, 0.145]), and lower SRQ-20 scores (-0.068 [-0.137, -0.002]). Further, higher empowerment was indirectly associated with improved child development through enhancement of caregiver dietary diversity, with an indirect effect of 0.008 (0.002, 0.018). These findings highlight the important role that caregiver diet and empowerment play in directly influencing child development and other aspects of caregiver well-being. Interventions aimed at enhancing child development should consider these factors as potential targets to improve outcomes for children and caregivers.

"I do lack peace, and I've run out of answers": primary caregivers' perspectives on social and behaviour problems in cerebral malaria survivors in Blantyre, Malawi.

BACKGROUND: Despite recent advances in treatment and prevention, the prevalence of cerebral malaria (CM) remains high globally, especially in children under 5 years old. As treatment improves, more children will survive episodes of CM with lasting neurodisabilities, such as social and behavioural issues. Behaviour problems in children who survive CM are poorly characterized, and the impact of caring for a child with post-CM behaviour issues has not been well-explored. Caregivers' perceptions of and experiences with their child's post-CM behaviour problems are reported here. METHODS: Semi-structured interviews were conducted with 29 primary caregivers of children who survived CM with reported behaviour issues in Blantyre, Malawi. Interviews were conducted in Chichewa, audio-recorded, transcribed, and translated into English. Data were coded manually, utilizing inductive and deductive approaches. Identified codes were thematically analysed. RESULTS: Post-CM behaviours reported include externalizing, aggressive behaviours and learning difficulties. Variable timescales for behaviour change onset were noted, and most caregivers reported some evolution of their child's behaviour over time. Caregivers experienced a variety of emotions connected to their child's behaviour and to reactions of family and community members. Caregivers who experienced discrimination were more likely to describe negative emotions tied to their child's behaviour changes, compared to caregivers who experienced support. CONCLUSIONS: Caregiver perceptions of behaviour changes in post-CM survivors are variable, and caregiver experience is strongly impacted by family and community member responses. Future educational, rehabilitation, and support-based programmes should focus on the specific types of behaviour problems identified and the difficulties faced by caregivers and their communities.

'They said, let's teach you how you are going to care for the child at home ': caregivers' and healthcare worker's perceptions and experiences of post-discharge preterm care in eastern Uganda.

BACKGROUND: Complications of prematurity are the leading cause of neonatal mortality, and the majority of these deaths occur in low and middle-income countries. Research in these settings has focused on improved outcomes for preterm infants in hospital settings, however, research into the continuation of preterm care in the home after discharge from a neonatal unit is limited. This study examines the experiences and perceptions of caregivers of preterm infants during the initial weeks following discharge from a neonatal unit in Uganda, and the views of healthcare workers (HCWs) on the ability of caregivers to cope. METHODS: This qualitative study used multiple data collection approaches, namely focus group discussions (FGDs), in-depth interviews (IDIs), field observations, and case studies to explore the perceptions and experiences of providing care to preterm infants post-discharge from a neonatal unit in eastern Uganda from the perspectives of caregivers and HCWs. RESULTS: We recruited 39 participants with a total of 35 separate sessions including 18 IDIs (12 caregivers and 6 HCWs), 3 FGDs (17 caregivers), and 4 case studies (14 separate IDIs over 5 weeks after discharge, three mothers, and one grandmother). IDIs and FGDs took place at the Mbale Regional Referral Hospital or in participants' homes. Key themes emerged; preparation for continuing care in the home, psychosocial challenges to providing preterm care in the home, barriers to continuing preterm care in the home, and suggestions for improvement of preterm care in the home. Caregivers had good knowledge and awareness about different aspects of preterm care. Following discharge, caregivers struggled to maintain quality care due to loss of continuous support from the neonatal team, feelings of anxiety and isolation, financial issues, and home responsibilities. CONCLUSION: This study highlights multiple challenges to continuing preterm care in this Ugandan setting. Improved training and education for caregivers, especially in neonatal resuscitation, enhanced and continued support of the caregiver and infant in the home, and increased community involvement following discharge may all be key solutions. These findings are fundamental to improving care in the home for preterm infants in eastern Uganda and similar settings.

Neurocognitive outcomes in Malawian children exposed to malaria during pregnancy: An observational birth cohort study.

BACKGROUND: Annually 125 million pregnancies are at risk of malaria infection. However, the impact of exposure to malaria in pregnancy on neurodevelopment in children is not well understood. We hypothesized that malaria in pregnancy and associated maternal immune activation result in neurodevelopmental delay in exposed offspring. METHODS AND FINDINGS: Between April 2014 and April 2015, we followed 421 Malawian mother-baby dyads (median [IQR] maternal age: 21 [19, 28] years) who were previously enrolled (median [IQR] gestational age at enrollment: 19.7 [17.9, 22.1] weeks) in a randomized controlled malaria prevention trial with 5 or 6 scheduled assessments of antenatal malaria infection by PCR. Children were evaluated at 12, 18, and/or 24 months of age with cognitive tests previously validated in Malawi: the Malawi Developmental Assessment Tool (MDAT) and the MacArthur-Bates Communicative Development Inventories (MCAB-CDI). We assessed the impact of antenatal malaria (n [%] positive: 240 [57.3]), placental malaria (n [%] positive: 112 [29.6]), and maternal immune activation on neurocognitive development in children. Linear mixed-effects analysis showed that children exposed to antenatal malaria between 33 and 37 weeks gestation had delayed language development across the 2-year follow-up, as measured by MCAB-CDI (adjusted beta estimate [95% CI], -7.53 [-13.04, -2.02], p = 0.008). Maternal immune activation, characterized by increased maternal sTNFRII concentration, between 33 and 37 weeks was associated with lower MCAB-CDI language score (adjusted beta estimate [95% CI], -8.57 [-13.09, -4.06], p < 0.001). Main limitations of this study include a relatively short length of follow-up and a potential for residual confounding that is characteristic of observational studies. CONCLUSIONS: This mother-baby cohort presents evidence of a relationship between malaria in pregnancy and neurodevelopmental delay in offspring. Malaria in pregnancy may be a modifiable risk factor for neurodevelopmental injury independent of birth weight or prematurity. Successful interventions to prevent malaria during pregnancy may reduce the risk of neurocognitive delay in children.

Impact of food supplements on early child development in children with moderate acute malnutrition: A randomised 2 x 2 x 3 factorial trial in Burkina Faso.

BACKGROUND: Lipid-based nutrient supplements (LNS) and corn-soy blends (CSBs) with varying soy and milk content are used in treatment of moderate acute malnutrition (MAM). We assessed the impact of these supplements on child development. METHODS AND FINDINGS: We conducted a randomised 2 × 2 × 3 factorial trial to assess the effectiveness of 12 weeks' supplementation with LNS or CSB, with either soy isolate or dehulled soy, and either 0%, 20%, or 50% of protein from milk, on child development among 6-23-month-old children with MAM. Recruitment took place at 5 health centres in Province du Passoré, Burkina Faso between September 2013 and August 2014. The study was fully blinded with respect to soy quality and milk content, while study participants were not blinded with respect to matrix. This analysis presents secondary trial outcomes: Gross motor, fine motor, and language development were assessed using the Malawi Development Assessment Tool (MDAT). Of 1,609 children enrolled, 54.7% were girls, and median age was 11.3 months (interquartile range [IQR] 8.2-16.0). Twelve weeks follow-up was completed by 1,548 (96.2%), and 24 weeks follow-up was completed by 1,503 (93.4%); follow-up was similar between randomised groups. During the study, 4 children died, and 102 children developed severe acute malnutrition (SAM). There was no difference in adverse events between randomised groups. At 12 weeks, the mean MDAT z-scores in the whole cohort had increased by 0.33 (95% CI: 0.28, 0.37), p < 0.001 for gross motor; 0.26 (0.20, 0.31), p < 0.001 for fine motor; and 0.14 (0.09, 0.20), p < 0.001 for language development. Children had larger improvement in language z-scores if receiving supplements with milk (20%: 0.09 [-0.01, 0.19], p = 0.08 and 50%: 0.11 [0.01, 0.21], p = 0.02), although the difference only reached statistical significance for 50% milk. Post hoc analyses suggested that this effect was specific to boys (interaction p = 0.02). The fine motor z-scores were also improved in children receiving milk, but only when 20% milk was added to CSB (0.18 [0.03, 0.33], p = 0.02). Soy isolate over dehulled soy increased language z-scores by 0.07 (-0.01, 0.15), p = 0.10, although not statistically significant. Post hoc analyses suggested that LNS benefited gross motor development among boys more than did CSB (interaction p = 0.04). Differences between supplement groups did not persist at 24 weeks, but MDAT z-scores continued to increase post-supplementation. The lack of an unsupplemented control group limits us from determining the overall effects of nutritional supplementation for children with MAM. CONCLUSIONS: In this study, we found that child development improved during and after supplementation for treatment of MAM. Milk protein was beneficial for language and fine motor development, while suggested benefits related to soy quality and supplement matrix merit further investigation. Supplement-specific effects were not found post-intervention, but z-scores continued to improve, suggesting a sustained overall effect of supplementation. TRIAL REGISTRATION: ISRCTN42569496.

"We can't handle things we don't know about": perceived neurorehabilitation challenges for Malawian paediatric cerebral malaria survivors.

BACKGROUND: We sought to identify perceptions of neurorehabilitation challenges for paediatric cerebral malaria (CM) survivors post-hospital discharge at Queen Elizabeth Central Hospital (QECH) in Blantyre, Malawi. METHODS: An exploratory approach was used to qualitatively investigate the perceived neurorehabilitation challenges for paediatric CM survivors. Data were collected through semi-structured in-depth interviews (IDIs) and focus group discussions (FGDs). Eighteen data-gathering sessions were conducted with 38 total participants, including 3 FGDs with 23 primary caregivers, 11 IDIs with healthcare workers at QECH, and 4 IDIs with community-based rehabilitation workers (CRWs). RESULTS: FGDs revealed that caregivers lack important knowledge about CM and fear recurrence of CM in their children. Post-CM children and families experience substantial stigma and sociocultural barriers to integrating into their community and accessing neurorehabilitative care. At a community-level, rehabilitation infrastructure, including trained staff, equipment, and programmes, is extremely limited. Rehabilitation services are inequitably accessible, and community-based rehabilitation remains largely unavailable. CONCLUSIONS: There is an urgent need to establish further training of rehabilitation personnel at all levels and to build accessible rehabilitation infrastructure in Malawi for post-CM patients. Additional work is required to expand this study across multiple regions for a holistic understanding of neurorehabilitation needs.

Estimated prevalence of disability and developmental delay among preschool children in rural Malawi: Findings from "Tikule Limodzi," a cross-sectional survey.

BACKGROUND: Early childhood development (ECD) is a critical stage in children's lives, influencing future development and social integration. ECD research among children with disability and developmental delay in low- and middle-income countries is limited but crucial to inform planning and delivery of inclusive services. This study is the first to measure and compare the prevalence of disability and developmental delay among children attending preschool centres in rural Malawi. METHODS: A cross-sectional survey was conducted in 48 preschool centres in Thyolo district, Malawi. Data were collected from parents or guardians of 20 children per centre. Disability was ascertained using the Washington Group/UNICEF Child Functioning Module. Child development was measured using the language and social domains of the Malawi Development Assessment Tool. RESULTS: A total of 960 children were enrolled; 935 (97.4%) children were assessed for disability and 933 (97.2%) for developmental delay; 100 (10.7%) children were identified as having a disability. The prevalence of disability was higher among children 5+ years (n = 60; 29.3%) than children 2-4 years (n = 40; 5.5%); 109 of 933 (11.7%) children were classified as having developmental delay, 41 (4.4%) in "language" and 77 (8·3%) in "social" domains. CONCLUSIONS: This study found that disability and developmental delays are common among preschool children in Malawi. It is one of the first to measure disability and delay among children in a preschool setting in Africa.

Early development in children with moderate acute malnutrition: A cross-sectional study in Burkina Faso.

Malnutrition impairs cognitive, communication, and motor development, but it is not known how nutrition and health are associated with development in children with moderate acute malnutrition (MAM). We aimed to describe motor and language development of children with MAM and explore its nutrition and health-related correlates. This cross-sectional study used baseline data from a nutritional trial in children with MAM aged 6-23 months in Burkina Faso. Motor and language skills were assessed using the Malawi Development Assessment Tool (MDAT). Linear mixed models were used to explore potential correlates of MDAT including socio-economic status, anthropometry, body composition, whole-blood polyunsaturated fatty acids (PUFA), haemoglobin (Hb), iron status, and morbidity. We also assessed child and caregiver participation during MDAT procedures and their associations with correlates and development. MDAT data were available for 1.608 children. Mean (95% CI) MDAT z-scores were -0.39 (-0.45, -0.34) for gross motor, 0.54 (0.48, 0.59) for fine motor, and -0.91 (-0.96, -0.86) for language skills. Children with higher mid-upper arm circumference, weight-for-height, height-for-age, fat-free mass, n-3 PUFAs, Hb, and iron status had better MDAT z-scores, whereas children with more fat mass index, anaemia, illness, and inflammation had poorer z-scores. In addition, children living in larger households or with an unmarried mother had poorer MDAT z-scores. Associations between morbidity and z-scores were largely explained by children's poorer participation during MDAT assessment. The identified factors associated with child development may inform interventions needed to stimulate development during or after management of MAM.