Psychology Research Institute, Ulster University, Coleraine, UK.
J Intellect Disabil Res. 2022 Jul;66(7):628-641. doi: 10.1111/jir.12936. Epub 2022 May 6.
The measurement of subjective well-being is challenging with samples of adolescents with intellectual disability (ID) given the cognitive and linguistic difficulties they face in comprehending standardised measures, and as such is primarily based on proxy reports. The lack of appropriate tools needs to be addressed so that adolescents with ID can self-report on their own well-being. The current study reports on the use of participatory research methods to adapt and modify two standardised self-report measures of subjective well-being suitable for completion by adolescents with ID.
Two special schools were recruited for this study. At each school, staff (n = 15) and pupils aged 11-17 years (n = 35) participated. A series of co-design workshops were conducted to adapt two standardised subjective well-being measures: Kidscreen-10 and short-form Warwick-Edinburgh Mental Well-being Scale.
Specific aspects for measure adaption were identified: simplifying the item wording and phrasing; inclusion of pictorial communication symbols and visual prompts to represent the meaning of items; changing of tense of questions from past to present; asking questions rather than statements; reducing 5-point Likert scales to 3-point or dichotomous; presenting one item at a time during administration; and developing alternate formats of the survey to ensure inclusivity.
This paper illustrates the value of using participatory research methods when working alongside adolescents with ID and offers methodological, as well as practical, guidance in the context of adapting subjective self-report measures for this target group, serving as a guide to fellow researchers and clinicians interested in modifying or developing self-report measures for adolescents with ID.
由于智障青少年在理解标准化测量时面临认知和语言困难，因此对他们进行主观幸福感的测量具有挑战性，主要依赖于代理报告。需要解决缺乏适当工具的问题，以便智障青少年能够自我报告自己的幸福感。本研究报告了使用参与式研究方法来改编和修改适合智障青少年完成的两个标准化主观幸福感自评量表。
本研究招募了两所特殊学校。在每所学校，工作人员（n=15）和 11-17 岁的学生（n=35）参与了研究。进行了一系列共同设计研讨会，以改编两个标准化的主观幸福感量表：Kidscreen-10 和 Warwick-Edinburgh 心理健康量表短式。
确定了用于测量适应的具体方面：简化项目措辞和措辞；纳入图片交流符号和视觉提示来表示项目的含义；将问题的时态从过去改为现在；使用提问而不是陈述；将 5 点李克特量表减少到 3 点或二分制；在管理过程中一次呈现一个项目；并开发调查的替代格式以确保包容性。
本文说明了在与智障青少年合作时使用参与式研究方法的价值，并在为目标群体改编主观自评量表的背景下提供了方法和实践指导，为有兴趣修改或开发智障青少年自评量表的研究人员和临床医生提供了指导。
