Randomised controlled pilot feasibility trial of an early intervention programme for young infants with neurodevelopmental impairment in Uganda: a study protocol

Nampijja, Margaret; Webb, Emily L.; Nanyunja, Carol; Sadoo, Samantha; Nalugya, Ruth; Nyonyintono, James; Muhumuza, Anita; Ssekidde, Moses; Katumba, Kenneth; Magnusson, Brooke; Kabugo, Daniel; Cowan, Frances; Martinez‐Biarge, Miriam; Zuurmond, Maria; Morgan, Catherine; Lester, Deborah; Seeley, Janet; Tann, Cally J

doi:10.1136/bmjopen-2019-032705

Cited by 17 publications

(5 citation statements)

References 21 publications

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“…The feasibility trial was a two-centre, single blind, randomized controlled trial with two parallel groups to evaluate this participatory, group, early care and support programme compared to standard care. The trial methodology has been previously described [ 30 ] and the findings reported [ 29 ]. Trial participants were young children (6–11 months of age) with neurodevelopmental impairment (NDI) consistent with a diagnosis of developmental disability and their caregivers, from two sites in Uganda: Mulago Hospital, the National Referral Hospital in Kampala; and Kiwoko Hospital in Nakaseke District, central Uganda [ 30 ].…”

Section: Methodsmentioning

confidence: 99%

“…The trial methodology has been previously described [ 30 ] and the findings reported [ 29 ]. Trial participants were young children (6–11 months of age) with neurodevelopmental impairment (NDI) consistent with a diagnosis of developmental disability and their caregivers, from two sites in Uganda: Mulago Hospital, the National Referral Hospital in Kampala; and Kiwoko Hospital in Nakaseke District, central Uganda [ 30 ]. Recruited children were 6–11 months of age and were followed to 18–23 months.…”

Section: Methodsmentioning

confidence: 99%

“…Recruited participants underwent standardized scored neurodevelopmental assessments using the Griffiths Mental Development Scales-II (GMDS) to assign a developmental quotient (DQ) and the Hammersmith Infant Neurological Examination (HINE). NDI at 6–11 months was defined as a DQ<70 and, or HINE <60 [ 30 ]. Severity of NDI was categorized as mild (DQ 70-<85), moderate (DQ 55-<70) or severe (DQ <55).…”

Section: Methodsmentioning

confidence: 99%

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The economic burden incurred by families caring for a young child with developmental disability in Uganda

Katumba

Tann

Webb

et al. 2023

PLOS Glob Public Health

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Each year, nearly 30 million children globally are at risk of developmental difficulties and disability as a result of newborn health conditions, with the majority living in resource-constrained countries. This study estimates the annual cost to families related to caring for a young child with developmental disability in Uganda. Nested within a feasibility trial of early care and support for young children with developmental disabilities, this sub-study estimated the cost of illness, the cost of paternal abandonment of the caregiver and the affordability of care by household. Seventy-three caregivers took part in this sub-study. The average annual cost of illness to families was USD 949. The main cost drivers were the cost of seeking care and income lost due to loss of employment. Households caring for a child with a disability spent more than the national average household expenditure, and the annual cost of illness for all households was more than 100% of the national GDP per capita. In addition, 84% of caregivers faced economic consequences and resorted to wealth-reducing coping strategies. Families caring for a child with severe impairment incurred USD 358 more on average than those with mild or moderate impairment. Paternal abandonment was common (31%) with affected mothers losing an average of USD 430 in financial support. Caring for a young child with developmental disability was unaffordable to all the study households. Programmes of early care and support have the potential to reduce these financial impacts. National efforts to curb this catastrophic health expenditure are necessary.

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Section: Methodsmentioning

confidence: 99%

Section: Methodsmentioning

confidence: 99%

Section: Methodsmentioning

confidence: 99%

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The economic burden incurred by families caring for a young child with developmental disability in Uganda

Katumba

Tann

Webb

et al. 2023

PLOS Glob Public Health

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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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“…They also show the feasibility of facilitation by a professional and a caregiver [38]. A randomized controlled trial evaluation of Baby Ubuntu is forthcoming [39].…”

mentioning

confidence: 92%

Nutritional care for children with feeding difficulties and disabilities: A scoping review

Klein

Uyehara

Cunningham

et al. 2023

PLOS Glob Public Health

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One billion people worldwide have a disability, and 80 percent of them live in low- and middle-income countries (LMICs). The prevalence of feeding difficulties globally ranges from 25–45 percent to 33–80 percent in children without and with disabilities, respectively. The U.S. Agency for International Development’s (USAID) flagship multi-sectoral nutrition project, USAID Advancing Nutrition, conducted a scoping review of programs supporting nutritional care of children with disability and non-disability related feeding difficulties. The non-systematic scoping review included a desk review of peer-reviewed and non-peer-reviewed literature and key informant interviews. In all, 127 documents with publication dates ranging from 2003 to 2022 were identified through keyword searches and snowballing and met the inclusion criteria, and 42 experts in nutrition and disability were interviewed. Findings were organized using structured matrices of challenges and opportunities across the universal progressive model of care framework in the identification and management of feeding difficulties and disabilities and support for children with feeding difficulties and disabilities and their families. The review found insufficient policies, programs, and evidence to support children with feeding difficulties and disabilities and their families. While some resources and promising approaches exist, they are not standardized or universally used, staff are not trained to use them, and there is insufficient funding to implement them. The combination of challenges in identifying feeding difficulties and disabilities, a lack of understanding of the link between disabilities and feeding, and weak or nonexistent referral or specialized services puts these children at risk of malnutrition. Additionally, their families face challenges providing the care they need, including coping with high care demands, accessing support, obtaining appropriate foods, and managing stigma. Four areas of recommendations emerged to support children with feeding difficulties and disabilities: (1) Strengthen systems to improve identification and service provision; (2) Provide direct support to families to address determinants that affect nutrition outcomes; (3) Conduct advocacy to raise awareness of the needs and opportunities; and (4) Build the evidence base on effective interventions to identify and support these children and their families.

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Randomised controlled pilot feasibility trial of an early intervention programme for young infants with neurodevelopmental impairment in Uganda: a study protocol

Cited by 17 publications

References 21 publications

The economic burden incurred by families caring for a young child with developmental disability in Uganda

The economic burden incurred by families caring for a young child with developmental disability in Uganda

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

Nutritional care for children with feeding difficulties and disabilities: A scoping review

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