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

IF 1.7 4区医学 Q2 PEDIATRICS

Indian pediatrics Pub Date : 2025-06-10 DOI:10.1007/s13312-025-00104-7

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

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引用次数: 0

Abstract

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.

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慢性神经发育障碍儿童护理人员残疾读写能力量表的编制。

目的：为慢性神经发育障碍儿童护理人员编制残疾读写能力量表。方法：在印度的十个地点分三个阶段进行了多中心横断面、基于设施的研究。第一阶段，通过自由清单和史密斯显著性评分进行量表核心题的生成和识别。第二阶段是通过专家德尔菲轮次建立内容效度，第三阶段是通过简单随机抽样从每个中心招募护理人员（n = 323）来确定因素并进行信度分析。结果：在通过自由罗列产生的83个题项中，最终量表纳入了24个题项，信度为0.79。探索性因素分析确定了五个因素，解释了31%的方差：关于治疗和支持服务的知识（7项），关于活动和参与决策的知识（4项），协作目标设定能力（4项），寿命关注（6项）和自助技能（3项）。结论：为慢性神经发育障碍儿童的护理人员开发了一种可靠的残疾特异性识字测量工具。该量表有五种印度语言版本，可由护理人员自行管理。

本文章由计算机程序翻译，如有差异，请以英文原文为准。

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来源期刊

Indian pediatrics 医学-小儿科

CiteScore

3.30

自引率

8.70%

发文量

344

审稿时长

3-8 weeks

期刊介绍： The general objective of Indian Pediatrics is "To promote the science and practice of Pediatrics." An important guiding principle has been the simultaneous need to inform, educate and entertain the target audience. The specific key objectives are: -To publish original, relevant, well researched peer reviewed articles on issues related to child health. -To provide continuing education to support informed clinical decisions and research. -To foster responsible and balanced debate on controversial issues that affect child health, including non-clinical areas such as medical education, ethics, law, environment and economics. -To achieve the highest level of ethical medical journalism and to produce a publication that is timely, credible and enjoyable to read.