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Engaging in community research and impact measurement relevant to Ummeed’s work.

Cross-Cultural Adaptation and Evaluation of the Participation and Environment Measure for Children and Youth to the Indian Context—A Mixed-Methods Study

Participation in home, school, and community activities is an important outcome in the rehabilitation of children and youth with disabilities. Participation and Environment Measure Children and Youth (PEM-CY) is a tool developed by CanChild Center for childhood disability research, McMaster University in Canada) to measure participation in children between 5 to 17 years of age, and the effect of environmental factors on it.

Over the last 1.5-2 years, the Ummeed team has been working on adapting the PEM-CY culturally and evaluating it for use in the Indian context. The process and results of this work were recently published in The International Journal of Environmental Research and Public Health. The article also documents, for the first time in India, a clear difference between the levels of participation of children with and without disabilities in the home, school, and community.

Ummeed is now considering ways of using the Indian PEM-CY to measure outcomes of its interventions towards supporting children and families. This is also a tool that can be used by other organizations in the disability space to design interventions and measure their outcomes at an individual and a programmatic level. Since February 2021, Ummeed has also implemented a new training program - Pathways and Resources for Engagement and Participation (PREP) - with the objective of increasing awareness and understanding around the importance of participation-based outcomes and support adoption of the PEM-CY tool.

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Developing an International Guide for Monitoring Child Development (IGMCD)

Funded by: National Institute of Health, USA

In partnership with: Yale University and University of Ankara

Objective: Develop a tool that can be used by community health workers in low and middle income countries to monitor early childhood development.

Methodology: The study was conducted in 3 phases over 5 years, and data was collected from over 20,000 children from 4 low and middle income countries.

Why do we need a new tool for Low And Middle Income countries?

The following factors may preclude the use of standard assessment instruments like questionnaires and checklists.

  • Low literacy levels
  • Less than adequate awareness of typical patterns of child development
  • Limited access to trained medical professionals
  • Stigma associated with disabilities

What exactly is the IGMCD?

The IGMCD is a novel tool with the ultimate goal of facilitating developmental monitoring and the early detection of developmental difficulties in children between the ages of 0-42 months in Low and Middle Income (LAMI) countries. It consists of an open-ended, culturally neutral interview with a caregiver centered around the strengths of the child in his or her specific context.

Phase I (standardization): The IGMCD was administered to a diverse, prescriptive population of children to examine ages at which the developmental milestones of the IGMCD were attained and to construct one common instrument in all four countries.

Phase II (validation): The IGMCD was validated against an existing gold standard to determine the final milestones to be included. The scoring criteria and cut-off points were identified so that the GMCD was valid in detecting developmental delays.

Phase III (pilot study on clinical use in the community): The third phase looked at the benefit of using the GMCD in community health clinics in the four countries, in improving developmental monitoring and management of developmental delays. This pilot study also identified approaches needed to implement and sustain developmental monitoring using the GMCD during routine health care services.

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