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Objective <p>To develop a disability literacy scale for caregivers of children with chronic neurodevelopmental disabilities.</p> Methods <p>A multicentric cross-sectional, facility-based study was conducted across ten sites in India in three phases. In the first phase, item generation and identification of core items for the scale were carried out through free listing and Smith’s Salience Score. The second phase involved establishing content validity through Delphi rounds with experts, followed by identification of factors and reliability analysis in phase three by recruiting caregivers (<i>n</i> = 323) from each center through simple random sampling.</p> Results <p>Of 83 items generated through free listing, 24 items were included in the final scale with an excellent reliability of 0.79. Exploratory factor analysis identified five factors explaining 31% variance: knowledge regarding treatment and support services (7 items), knowledge regarding activity and participation decisions (4 items), collaborative goal setting ability (4 items), lifespan concerns (6 items), and skills for self-help (3 items).</p> Conclusions <p>A reliable, disability-specific literacy measurement tool has been developed for caregivers of children with chronic neurodevelopmental disabilities. The scale is available in five Indian languages and can be self-administered by caregivers.</p>

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Development of a Disability Literacy Scale for Caregivers of Children with Chronic Neurodevelopmental Disabilities (DLS-C)

  • 期刊论文

  • 发表日期：

    2025年6月10日

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  • Urmila Dahake,
  • Vedavati Bandyopadhyay,
  • Jaya Prasad Tripathy,
  • Meenakshi Girish,
  • Pradeep Deshmukh,
  • Sofia Azad,
  • Gayatri Devi Chinnappa,
  • Franzina Coutinho,
  • Chitra Shah,
  • Asis Kumar Ghosh,
  • M. C. Hamsalekha,
  • Devika Jain,
  • Varidmala Jain,
  • Dinesh Saroj,
  • Shambhavi Seth,
  • Navamani Venkatachalapathi

摘要

Objective

To develop a disability literacy scale for caregivers of children with chronic neurodevelopmental disabilities.

Methods

A multicentric cross-sectional, facility-based study was conducted across ten sites in India in three phases. In the first phase, item generation and identification of core items for the scale were carried out through free listing and Smith’s Salience Score. The second phase involved establishing content validity through Delphi rounds with experts, followed by identification of factors and reliability analysis in phase three by recruiting caregivers (n = 323) from each center through simple random sampling.

Results

Of 83 items generated through free listing, 24 items were included in the final scale with an excellent reliability of 0.79. Exploratory factor analysis identified five factors explaining 31% variance: knowledge regarding treatment and support services (7 items), knowledge regarding activity and participation decisions (4 items), collaborative goal setting ability (4 items), lifespan concerns (6 items), and skills for self-help (3 items).

Conclusions

A reliable, disability-specific literacy measurement tool has been developed for caregivers of children with chronic neurodevelopmental disabilities. The scale is available in five Indian languages and can be self-administered by caregivers.