{
  "abstract": "Objectives Early childhood interventions are crucial for children with developmental disabilities and caregivers. The PDC/Baby Ubuntu cluster randomised trial is evaluating the effectiveness and implementation of a programme of early identification, care and support for young children at risk of developmental disabilities, integrated into government health systems in Rwanda. We report findings of the trial baseline assessment.Methods At-risk children, aged 0-59 months, were recruited between March-July 2024. After written informed consent, data were collected on baseline sociodemographic and clinical characteristics. The Malawi Development Assessment Tool was administered to identify those with developmental disabilities. Child and caregiver outcomes were assessed at baseline using a structured standardised survey, administered by trained research staff. Primary outcomes were child participation and family quality of life.Results Overall, 1472 at-risk children were recruited; 843 with developmental disabilities. Developmental disabilities were associated with lower levels of participation in home and community activities, lower child functioning and lower nutritional z-scores, when compared to at-risk children without disabilities (all p<0.001). Caregivers of children with disabilities reported lower family quality of life including physical, emotional and social functioning, higher levels of psychological distress and affiliate stigma, and lower confidence in caring for their child (all p<0.001). However, access to services was low for caregivers: 67% had never received information on child disability and 90% had never received parental support training.Conclusions Childhood developmental disabilities have a substantial impact on the participation, well-being and quality of life of children and caregivers in Rwanda. However, service provision is limited.",
  "authors": [
    {
      "affiliations": [
        "Partners in Health/Inshuti Mu Buzima, Kigali, Rwanda"
      ],
      "name": "Mathieu Nemerimana"
    },
    {
      "affiliations": [
        "Faculty of Epidemiology and Population Health, London School of Hygiene & Tropical Medicine, London, United Kingdom"
      ],
      "name": "Nathaniel Scherer"
    },
    {
      "affiliations": [
        "Faculty of Epidemiology and Population Health, London School of Hygiene & Tropical Medicine, London, United Kingdom"
      ],
      "name": "Samantha Sadoo"
    },
    {
      "affiliations": [
        "School of Health Sciences, University of Rwanda, Kigali, Rwanda",
        "Lifetime Consulting and Partners, Kigali, Rwanda"
      ],
      "name": "Gatera Fiston Kitema"
    },
    {
      "affiliations": [
        "Faculty of Epidemiology and Population Health, London School of Hygiene & Tropical Medicine, London, United Kingdom",
        "MRC/UVRI and LSHTM Uganda Research Unit, Entebbe, Uganda"
      ],
      "name": "Carol Nanyunja"
    },
    {
      "affiliations": [
        "Faculty of Epidemiology and Population Health, London School of Hygiene & Tropical Medicine, London, United Kingdom"
      ],
      "name": "Katie Greenland"
    },
    {
      "affiliations": [
        "Faculty of Epidemiology and Population Health, London School of Hygiene & Tropical Medicine, London, United Kingdom"
      ],
      "name": "Sara Rotenberg"
    },
    {
      "affiliations": [
        "Lifetime Consulting and Partners, Kigali, Rwanda"
      ],
      "name": "Pierre Irunga"
    },
    {
      "affiliations": [
        "Faculty of Epidemiology and Population Health, London School of Hygiene & Tropical Medicine, London, United Kingdom"
      ],
      "name": "Rachel Lassman"
    },
    {
      "affiliations": [
        "Partners in Health/Inshuti Mu Buzima, Kigali, Rwanda"
      ],
      "name": "Francois Muhunde"
    },
    {
      "affiliations": [
        "Rwanda Biomedical Centre, Kigali, Rwanda"
      ],
      "name": "Fabrice Iradukunda"
    },
    {
      "affiliations": [
        "Faculty of Epidemiology and Population Health, London School of Hygiene & Tropical Medicine, London, United Kingdom"
      ],
      "name": "Shanquan Chen"
    },
    {
      "affiliations": [
        "Faculty of Epidemiology and Population Health, London School of Hygiene & Tropical Medicine, London, United Kingdom"
      ],
      "name": "David Musendo"
    },
    {
      "affiliations": [
        "Faculty of Epidemiology and Population Health, London School of Hygiene & Tropical Medicine, London, United Kingdom"
      ],
      "name": "Emily L Webb"
    },
    {
      "affiliations": [
        "Rwanda Biomedical Centre, Kigali, Rwanda"
      ],
      "name": "Francois Uwinkindi"
    },
    {
      "affiliations": [
        "Faculty of Epidemiology and Population Health, London School of Hygiene & Tropical Medicine, London, United Kingdom"
      ],
      "name": "Hannah Kuper"
    },
    {
      "affiliations": [
        "Partners in Health/Inshuti Mu Buzima, Kigali, Rwanda"
      ],
      "name": "Erick Baganizi"
    },
    {
      "affiliations": [
        "Faculty of Epidemiology and Population Health, London School of Hygiene & Tropical Medicine, London, United Kingdom"
      ],
      "name": "Cally J Tann"
    }
  ],
  "title": "100 Child and caregiver outcomes amongst children at risk of developmental disabilities in Rwanda: baseline assessment findings from the PDC/Baby Ubuntu trial",
  "uid": "26c9b92d-2a63-5701-ad00-881dde54bdfd"
}