Participation of young people with disabilities and/or chronic conditions in low‐ and middle‐income countries: a scoping review

Abstract

ABBREVIATIONS fPRC Family of participation-related constructs LMICs Low-and middle-income countries AIM The purpose of this scoping review was to describe and map the literature available on the participation of young people (0-21y) with disabilities and/or chronic conditions living in low-and middle-income countries (LMICs). METHOD A systematic search and selection process identified 78 publications. Descriptive data were extracted using a data-charting form, and studies were mapped using the family of participation-related constructs framework. RESULTS The findings demonstrated that, although the published evidence is steadily increasing, the participation research on this vulnerable population is still either absent or very scarce in the majority of LMICs, and very little is known about the participation of children with chronic health conditions. Most studies included in this review focused on attendance or 'being there'. INTERPRETATION Although attendance is an important aspect, more needs to be done to understand children's experiences or involvement while attending, thus capturing both dimensions of participation.

Children in South Africa with and without Intellectual Disabilities’ Rating of Their Frequency of Participation in Everyday Activities

“…While children with ID participated similarly to peers without ID in the majority of activities in terms of frequency of attendance, it does not necessarily mean that they were involved in the activities to the same extent. This is an aspect which future research would need to address as well, since there are still very few studies—particularly in LMICs—which focus on the involvement dimension of participation [ 16 ]. Ultimately the knowledge of how children with ID participate in everyday activities will allow clinicians and researchers to gain better insight of how and where to target interventions to improve children with IDs’ participation in everyday activities and which will ultimately contribute to their health and development [ 5 ].…”

“…Secondly, the evidence base is currently delimited to studies conducted in high income contexts [ 16 ]. The ICF, based as it is on an ecological model of childhood development and a biopsychosocial perspective, acknowledges the situational nature of participation with the environment viewed as a key influencing factor [ 17 ].…”

“…A recent systematic review focused on examining the participation construct in LMICs [ 16 ] revealed no studies to date in LMIC’s where children with ID have evaluated their frequency of participation in various out of school environments. The current study thus sought to evaluate children with ID’s ratings of their frequency of participation in various every-day contexts compared to their peers without intellectual disability in South Africa.…”

The Role of Social Support in Participation Perspectives of Caregivers of Children with Intellectual Disabilities in India and South Africa

“…However, the review by Anaby et al [ 20 ], which identified 28 studies (and three reviews), all were conducted in high-income countries. A more recent scoping review by Schlebusch et al [ 22 ] identified 78 studies on participation from low- and middle-income countries (55% conducted after the Anaby et al [ 20 ] review). However, only 4% ( n = 6) of these studies were from low-income countries, with 68% ( n = 53) conducted in upper-middle-income countries.…”

“…However, only 4% ( n = 6) of these studies were from low-income countries, with 68% ( n = 53) conducted in upper-middle-income countries. Furthermore, again only 4% ( n = 6) of the studies in this review considered the effect of the environment on children’s participation, while the remaining studies investigated participation as a process ( n = 7), participation as an outcome ( n = 42), child-related outcomes ( n = 14), and the measurement of participation or related constructs ( n = 11) [ 22 ]. All in all, there remains a lack of research on participation of children with disabilities from low- and middle-income countries, particularly in relation to environmental factors [ 22 , 23 ].…”