Department of Rehabilitation Sciences, Ghent University, Ghent, Belgium.
Department of Experimental Clinical and Health Psychology, Ghent University, Ghent, Belgium.
PLoS One. 2020 Mar 18;15(3):e0229538. doi: 10.1371/journal.pone.0229538. eCollection 2020.
Participation, defined as 'involvement in life situations' according to the World Health Organisation, is a well-recognized concept and critical indicator of quality of life. In addition it has become an important outcome measure in child rehabilitation. However, little is known about the level of participation of young children with Developmental Disabilities. The aim of this study was to capture their subjective experiences of participation. An adapted informed consent based on a comic strip was used to get the children's assent. A Photo Elicitation study was used, in which photographs were taken by the children when they were involved in meaningful activities. The photographs were then used to facilitate communication with the children and to initiate in depth-interviews. Forty-seven interviews with 16 children between five and nine years were conducted based on their photographs. This method generated rich data, confirming that young children with Developmental Disabilities were able to inform us accurately on their experiences of participation. Data was analysed by means of an inductive thematic analysis. Results showed that children perceived their participation as satisfying when they can play, learn and join in family gatherings resulting in feelings of inclusion, recognition and belonging. When there are-on occasions-moments that their participation was obstructed, the children used two strategies to resolve it. Or they walked away from it and choose not to participate, or when autonomously motivated for the activity, they relied primarily on their context (i.e. mothers) as enabling their participation. Related to the data, children discussed themes related to their person, activities, connections and mediators between those themes. These themes fit well within earlier and current research on the subject of participation.
参与，根据世界卫生组织的定义，是“参与生活情境”，是生活质量的一个公认概念和关键指标。此外，它已成为儿童康复的一个重要结果衡量标准。然而，对于发育障碍的幼儿的参与程度知之甚少。本研究的目的是捕捉他们参与的主观体验。采用改编的基于漫画的知情同意书来获得儿童的同意。采用照片引发研究，让孩子们在参与有意义的活动时拍照。然后，这些照片被用来促进与孩子们的沟通，并进行深入的访谈。根据他们的照片，对 16 名 5 至 9 岁的儿童进行了 47 次访谈。这种方法生成了丰富的数据，证实了发育障碍的幼儿能够准确地告知我们他们的参与体验。数据通过归纳主题分析进行分析。结果表明，当孩子们能够玩耍、学习和参加家庭聚会时，他们会感到满足，从而产生包容、认可和归属感。当他们的参与偶尔受到阻碍时，孩子们会采用两种策略来解决问题。或者他们选择回避，不参与；或者当他们出于自主动机参与某项活动时，他们主要依赖于他们的环境（即母亲）来使他们能够参与。与数据相关的是，孩子们讨论了与他们的个人、活动、联系以及这些主题之间的中介有关的主题。这些主题与之前和当前关于参与主题的研究非常吻合。
