Centre for Augmentative and Alternative Communication, University of Pretoria, Pretoria 0028, South Africa.
CHILD Research Group, Swedish Institute for Disability Research, Jönköping University, 55111 Jönköping, Sweden.
Int J Environ Res Public Health. 2020 Sep 15;17(18):6702. doi: 10.3390/ijerph17186702.
In a low-and middle-income country (LMIC) such as South Africa, not much is known about how children with intellectual disabilities (ID) participate in everyday activities, as no studies to date have compared their participation to peers without ID from the same background. Using a newly developed, contextually valid measure of participation, Picture my Participation (PmP), 106 children with (73) and without ID (33), rated their frequency of participation in activities of daily living. Previous international research has established that children with ID tend to participate less frequently than children without ID in everyday activities outside of the school setting. However, much of this research is based on proxy ratings from caregivers rather than children with ID themselves. There is a growing body of evidence that suggests children with disabilities have uniquely different views of their own participation than their caregivers. The existing research evidence is also delimited to studies conducted predominantly in high income contexts (HICSs). Since it is universally acknowledged that participation patterns are affected by the environment, it is important to evaluate the generalizability of the current evidence to LMICs. The current study found that there were many similar patterns of participation between the two groups although significant differences were noted in social, community, leisure and self-care activities. We compare these results to findings from studies conducted in HICs and find that there are similarities but also differences across contexts. This study highlights the importance of gaining a child's perspective of participation and understanding how intellectual disability can affect participation relative to peers without ID in LMICS.
在南非这样的中低收入国家(LMIC),对于智障儿童(ID)如何参与日常活动,我们知之甚少,因为迄今为止尚无研究将他们的参与情况与来自同一背景的无 ID 同龄人进行比较。本研究使用一种新开发的、具有上下文相关性的参与评估工具——Picture my Participation(PmP),对 106 名 ID 儿童(73 名)和非 ID 儿童(33 名)的日常生活活动参与频率进行了评估。先前的国际研究已经证实,智障儿童在学校以外的日常活动中参与的频率往往低于非 ID 儿童。然而,这些研究大多基于照顾者的代理评分,而不是智障儿童自身的评分。越来越多的证据表明,残疾儿童对自己参与的看法与照顾者不同。现有研究证据也仅限于在高收入环境(HICs)中进行的研究。由于普遍认为参与模式受到环境的影响,因此评估当前证据在 LMIC 中的普遍性非常重要。本研究发现,这两个群体的参与模式有许多相似之处,尽管在社会、社区、休闲和自我护理活动方面存在显著差异。我们将这些结果与在 HIC 进行的研究结果进行比较,发现不同环境存在相似之处,但也存在差异。这项研究强调了从儿童的角度了解参与情况以及了解智力残疾如何相对于无 ID 同龄人影响参与情况的重要性,这在 LMIC 中尤为重要。