Surviving and Thriving

Tann, Cally J; Kohli-Lynch, Maya; Nalugya, Ruth; Sadoo, Samantha; Martin, Karen R.; Lassman, Rachel; Nanyunja, Carol; Musoke, Margaret; Sewagaba, Margaret; Nampijja, Margaret; Seeley, Janet; Webb, Emily L.

doi:10.1097/iyc.0000000000000182

Cited by 14 publications

(8 citation statements)

References 58 publications

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“…In cases of suspected neurodevelopmental disability (as opposed to just delay), healthcare workers need clear and effective referral pathways to connect children to specialists for comprehensive assessments and treatment. Fortunately, there are efficacious evidence‐based treatments for children with developmental disabilities in high HIV‐burden settings which could be adopted [ 121 , 134 , 135 ]. In settings where specialists are few and costly, simple, community‐based interventions can be designed to support families requiring additional support.…”

Section: Discussionmentioning

confidence: 99%

Neurodevelopment among children exposed to HIV and uninfected in sub‐Saharan Africa

Bulterys,

Njuguna,

Mahy

et al. 2023

J Int AIDS Soc.

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IntroductionThe population of 16 million children exposed to HIV and uninfected (CHEU) under 15 years of age continues to expand rapidly, and the estimated prevalence of CHEU exceeds 20% in several countries in sub‐Saharan Africa with high HIV prevalence. Some evidence suggests that CHEU experience suboptimal neurodevelopmental outcomes compared to children born to women without HIV. In this commentary, we discuss the latest research on biologic and socio‐behavioural factors associated with neurodevelopmental outcomes among CHEU.DiscussionSome but not all studies have noted that CHEU are at risk of poorer neurodevelopment across multiple cognitive domains, most notably in language and motor skills, in diverse settings, ages and using varied assessment tools. Foetal HIV exposure can adversely influence infant immune function, structural brain integrity and growth trajectories. Foetal exposure to antiretrovirals may also influence outcomes. Moreover, general, non‐CHEU‐specific risk factors for poor neurodevelopment, such as preterm birth, food insecurity, growth faltering and household violence, are amplified among CHEU; addressing these factors will require multi‐factorial solutions. There is a need for rigorous harmonised approaches to identify children at the highest risk of delay. In high‐burden HIV settings, existing maternal child health programmes serving the general population could adopt structured early child development programmes that educate healthcare workers on CHEU‐specific risk factors and train them to conduct rapid neurodevelopmental screening tests. Community‐based interventions targeting parent knowledge of optimal caregiving practices have shown to be successful in improving neurodevelopmental outcomes in children and should be adapted for CHEU.ConclusionsCHEU in sub‐Saharan Africa have biologic and socio‐behavioural factors that may influence their neurodevelopment, brain maturation, immune system and overall health and wellbeing. Multidisciplinary research is needed to disentangle complex interactions between contributing factors. Common environmental and social risk factors for suboptimal neurodevelopment in the general population are disproportionately magnified within the CHEU population, and it is, therefore, important to draw on existing knowledge when considering the socio‐behavioural pathways through which HIV exposure could impact CHEU neurodevelopment. Approaches to identify children at greatest risk for poor outcomes and multisectoral interventions are needed to ensure optimal outcomes for CHEU in sub‐Saharan Africa.

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Section: Discussionmentioning

confidence: 99%

Neurodevelopment among children exposed to HIV and uninfected in sub‐Saharan Africa

Bulterys,

Njuguna,

Mahy

et al. 2023

J Int AIDS Soc.

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“…Based on this challenge, in 2019, the PDC program integrated early intervention using the Baby Ubuntu model [48], a group participatory early intervention program starting from 6 months for young children with disability and their families. The 10-module, participatory, parents' peer support group program includes a module designed to provide caregivers with skills to appropriately feed a child with a disability and manage their feeding difficulties at home [49,50].…”

Section: Plos Onementioning

confidence: 99%

Factors associated with recovery from stunting at 24 months of age among infants and young children enrolled in the Pediatric Development Clinic (PDC): A retrospective cohort study in rural Rwanda

Nemerimana,

Havugarurema,

Nshimyiryo

et al. 2023

PLoS ONE

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Introduction Stunting (low height/length-for-age) in early life is associated with poor long-term health and developmental outcomes. Nutrition interventions provided during the first 1,000 days of life can result in improved catch-up growth and development outcomes. We assessed factors associated with stunting recovery at 24 months of age among infants and young Children enrolled in Pediatric Development Clinics (PDC) who were stunted at 11 months of age. Methods This retrospective cohort study included infants and young children who enrolled in PDCs in two rural districts in Rwanda between April 2014 and December 2018. Children were included in the study if their PDC enrollment happened within 2 months after birth, were stunted at 11 months of age (considered as baseline) and had a stunting status measured and analyzed at 24 months of age. We defined moderate stunting as length-for-age z-score (LAZ) < -2 and ≥-3 and severe stunting as LAZ <-3 based on the 2006 WHO child growth standards. Stunting recovery at 24 months of age was defined as the child’s LAZ changing from <-2 to > -2. We used logistic regression analysis to investigate factors associated with stunting recovery. The factors analyzed included child and mother’s socio-demographic and clinical characteristics. Results Of the 179 children who were eligible for this study, 100 (55.9%) were severely stunted at age 11 months. At 24 months of age, 37 (20.7%) children recovered from stunting, while 21 (21.0%) severely stunted children improved to moderate stunting and 20 (25.3%) moderately-stunted children worsened to severe stunting. Early stunting at 6 months of age was associated with lower odds of stunting recovery, with the odds of stunting recovery being reduced by 80% (aOR: 0.2; 95%CI: 0.07–0.81) for severely stunted children and by 60% (aOR: 0.4; 95% CI: 0.16–0.97) for moderately stunted children (p = 0.035). Lower odds of stunting recovery were also observed among children who were severely stunted at 11 months of age (aOR: 0.3; 95% CI: 0.1–0.6, p = 0.004). No other maternal or child factors were statistically significantly associated with recovery from stunting at 24 months in our final adjusted model. Conclusion A substantial proportion of children who were enrolled in PDC within 2 months after birth and were stunted at 11 months of age recovered from stunting at 24 months of age. Children who were severely stunted at 11 months of age (baseline) and those who were stunted at 6 months of age were less likely to recover from stunting at 24 months of age compared to those with moderate stunting at 11 months and no stunting at 6 months of age, respectively. More focus on prevention and early identification of stunting during pregnancy and early life is important to the healthy growth of a child.

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“…"Ubuntu" has been developed and successfully tested and implemented in resource-limited settings. The modular, facilitated intervention is comprehensive in that it aims to promote inclusion and participation for the child with complex neurodisability in the community, to maximise the child's health and development, to empower caregivers through information sharing and peer support, to address stigma, and to promote the human rights of children with disabilities (24). These holistic aims align with the WHO's social determinants of health framework and the RAND "Future of Health" report in that social outcomes are considered as measures of improved health (25) (26).…”

Section: Introductionmentioning

confidence: 99%

What are the priority needs for those caring for children and young people with complex neurodisability within an ethnically diverse UK context? - The feasibility phase of the ENCOMPASS study

Prest

Wilson

Vassiliadou³

et al. 2023

Preprint

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Background Children and young people (CYP) with complex neurodisability experience multiple physical, communication, educational and social challenges which require complex packages of multidisciplinary care. Cerebral palsy, an exemplar complex neurodisability condition, is the most common cause of serious physical disabilities among children globally. It is unclear the best way to meet the emotional, social, practical, and empowerment needs of CYP with complex neurodisability and their caregivers. The aim of this study was to determine the needs and priorities of those caring for CYP with complex neurodisability. This forms part of the feasibility phase of a wider study (ENCOMPASS) which aims to adapt the Baby Ubuntu intervention, a participatory caregiver programme for families of CYP with complex neurodisability, to an ethnically diverse urban UK context. Methods Two rounds of semi-structured interviews were conducted with 12 caregivers of CYP with complex neurodisability and six healthcare professionals from a variety of disciplines, recruited from a community child health service in London Borough of Newham, UK in 2020. The interviews included open-ended questions to explore caregiving trajectories, experiences of navigating health services and perceived service gaps. Transcripts were analysed using a data-driven inductive thematic analysis. Results Three themes were identified that related to the aim of understanding caregivers experiences and unmet needs relating to current service provision. These were (1) Caregiver Mental Health, (2) A Thirst for Knowledge and (3) The Need for Holistic Support. Mental health difficulties were reported, particularly around the period of diagnosis. Priority needs included the provision of clear information about the diagnosis and services offered, opportunities to forge peer support networks and for services across the community to collaborate. Conclusions The delivery of health services for CYP with neurodisability should encompass the broad needs of the family as well as meeting the clinical needs of the CYP.

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Surviving and Thriving

Cited by 14 publications

References 58 publications

Neurodevelopment among children exposed to HIV and uninfected in sub‐Saharan Africa

Neurodevelopment among children exposed to HIV and uninfected in sub‐Saharan Africa

Factors associated with recovery from stunting at 24 months of age among infants and young children enrolled in the Pediatric Development Clinic (PDC): A retrospective cohort study in rural Rwanda

What are the priority needs for those caring for children and young people with complex neurodisability within an ethnically diverse UK context? - The feasibility phase of the ENCOMPASS study

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