Parents' perspectives on participation of young children with attention deficit hyperactivity disorder, developmental coordination disorder, and/ or autism spectrum disorder: A systematic scoping review

Abstract

Background: During the early years of a child's life, participation is essential for learning and development. Children with disabilities are at risk for decreased participation. The interplay between environment and participation is identified as one of the most important factors influencing successful participation. The objective of this scoping review was to synthesize peer-reviewed literature about barriers and facilitators of participation according to the perspective of parents of children younger than 6 years with Attention Deficit Hyperactivity Disorder (ADHD), Autism Spectrum Disorder (ASD), and/ or Developmental Coordination Disorder (DCD). Methods: The scoping review followed Arksey and O'Malley's framework. Relevant studies were identified by a comprehensive search of scientific databases (PubMed and Web of Science). Studies describing perspectives of parents regarding their child's participation, written in English, and published between 2001 and September 2017 were included. Results: A total of 854 articles were retrieved, with 13 meeting the criteria. Elements contributing to perceived barriers and facilitators were identified and organized according to the International Classification of Functioning, Child-Youth framework.Concepts contained in these studies were linked to "activities and participation" (general tasks and demands, such as bedtime and dinner routines, and social, civic life, such as play and leisure). Environment-focused factors identified were situated on "support and relationships, " "attitudes, " and "services, systems, and policies." Conclusion:The review revealed guidelines focusing on family-centred care, communication with, and providing information to parents with young children with developmental disabilities (ADHD, DCD, and/ or ASD).

Exploring the Participation Patterns and Impact of Environment in Preschool Children with ASD

“…Furthermore, their restrictive and repetitive behaviors may set them apart from other children and further limit their participation in everyday activities [ 19 ]. In addition, parents of children with ASD indicate that their child’s participation may also be impacted because parents may avoid participation outside their home due to fears of the negative perceptions of others [ 24 , 25 ].…”

“…To date, studies on participation of children with disabilities have focused on school-aged children and adolescents and those with physical disabilities, while there is a lack of research on participation for young children with ASD [ 24 ]. A systematic review by Adair et al [ 6 ] found that of the 394 articles on participation that they reviewed, 105 articles focused solely on cerebral palsy, while only 37 articles focused on ASD.…”

Continuity of neuro-psychomotor stimulation of children with congenital Zika syndrome

“…Regarding the socioenvironmental aspects that interfere with the follow-up of stimulation of children with CZS, it was found that the caregivers feel insecure to continue with the stimulation due to low education and little clarification about the CZS. Research corroborates this aspect by showing that the engagement of children with physical disabilities in stimulation services is more influenced by environmental factors (such as social support, financial resources and level of family knowledge) than by the type of disability (14) .…”

“…Despite these efforts, a study points out that it is common for caregivers of children with disabilities not to cooperate with the continuation of development stimulation, because they do not recognize themselves as competent subjects for this purpose (14) . There may also be a failure in communication or reception between rehabilitation services and the family: for example, if caregivers feel judged or if their children are ignored during the visits (15) .…”

Developmental Coordination Disorder and Most Prevalent Comorbidities: A Narrative Review

“…This is intended, on the one hand, to sensitize psycho-social professionals to DCD characteristics and on the other hand to make children and families feel understood and supported. Recently, some researchers conducted a systematic scoping review which gave birth to guidelines focusing on family-centered care, communication with, and providing information to parents with young children with developmental disabilities considering ADHD, DCD and ASD [ 90 ].…”