{
  "abstract": "Objectives Early childhood disability may profoundly affect participation in daily activities, particularly without environmental accommodation. We performed a cross-cultural adaptation and validation of the Young Children’s Participation and Environment Measure (YC-PEM) to measure participation in Rwanda.Methods This adaptation and validation was conducted within a cluster-randomised trial examining the impact of the PDC/Baby Ubuntu programme on participation of children at risk of developmental disabilities in Rwanda. To inform adaptation, we conducted semi-structured interviews with healthcare providers and caregivers of children with disabilities. Thematic analysis guided adaptations (item, conceptual, semantic and operational dimensions) according to published adaptation guidelines. We implemented the adapted tool with 1472 caregivers of at-risk children aged 0-59 months, including 843 meeting criteria for developmental disabilities. Discriminant validity of YC-PEM scores was assessed between children with and without developmental disabilities. Inter-rater reliability was calculated from 21 dual assessments.Results 52/56 items (93%) of home and community YC-PEM items were adapted for semantic or conceptual equivalence. Children with disabilities were significantly less likely to participate in home and community activities (both p < 0.001), and when they did, they were significantly less involved than children without disabilities (both p < 0.001). Participation increased with age, although the gap between disability groups widened as children aged. Inter-rater reliability was excellent (κ=0.999)Conclusions The adapted YC-PEM demonstrated discriminant validity as a measure of child participation among young children with disabilities in Rwanda, with strong inter-rater reliability. The tool is now a primary outcome measure in the PDC/Baby Ubuntu trial in Rwanda.",
  "authors": [
    {
      "affiliations": [
        "London School of Hygiene and Tropical Medicine, London, United Kingdom",
        "MRC/UVRI & LSHTM Uganda Research Unit, Entebbe, Uganda"
      ],
      "name": "Carol Nanyunja"
    },
    {
      "affiliations": [
        "London School of Hygiene and Tropical Medicine, London, United Kingdom"
      ],
      "name": "Katie Greenland"
    },
    {
      "affiliations": [
        "London School of Hygiene and Tropical Medicine, London, United Kingdom"
      ],
      "name": "Samantha Sadoo"
    },
    {
      "affiliations": [
        "Partners in Health/Inshuti mu Buzima, Kigali, Rwanda"
      ],
      "name": "Mathieu Nemerimana"
    },
    {
      "affiliations": [
        "MRC/UVRI & LSHTM Uganda Research Unit, Entebbe, Uganda"
      ],
      "name": "Bridget Nassanga"
    },
    {
      "affiliations": [
        "MRC/UVRI & LSHTM Uganda Research Unit, Entebbe, Uganda"
      ],
      "name": "Lucy Mbabazi"
    },
    {
      "affiliations": [
        "Adara Development, Kampala, Uganda"
      ],
      "name": "Sam Semakula"
    },
    {
      "affiliations": [
        "Lifetime Consulting, Kigali, Rwanda"
      ],
      "name": "Betty Uwizeye"
    },
    {
      "affiliations": [
        "Lifetime Consulting, Kigali, Rwanda"
      ],
      "name": "David Musendo"
    },
    {
      "affiliations": [
        "Lifetime Consulting, Kigali, Rwanda"
      ],
      "name": "Gatera Fiston Kitema"
    },
    {
      "affiliations": [
        "London School of Hygiene and Tropical Medicine, London, United Kingdom"
      ],
      "name": "Sara Rotenberg"
    },
    {
      "affiliations": [
        "London School of Hygiene and Tropical Medicine, London, United Kingdom"
      ],
      "name": "Rachel Lassman"
    },
    {
      "affiliations": [
        "London School of Hygiene and Tropical Medicine, London, United Kingdom"
      ],
      "name": "Emily Webb"
    },
    {
      "affiliations": [
        "University of Illinois at Chicago, Chicago, USA"
      ],
      "name": "Mary Khetani"
    },
    {
      "affiliations": [
        "London School of Hygiene and Tropical Medicine, London, United Kingdom"
      ],
      "name": "Nathaniel Scherer"
    },
    {
      "affiliations": [
        "Partners in Health/Inshuti mu Buzima, Kigali, Rwanda"
      ],
      "name": "Erick Baganizi"
    },
    {
      "affiliations": [
        "London School of Hygiene and Tropical Medicine, London, United Kingdom"
      ],
      "name": "Cally Tann"
    }
  ],
  "title": "119 Adaptation and validation of the young children’s participation and environment measure (YC-PEM) in Rwanda",
  "uid": "9929a9b5-8908-5e58-964f-3e102602a276"
}