Participation of Children with Special Health Care Needs in School and the Community

Abstract

Objective Children with special health care needs (CSHCN) are at risk for decreased participation which can negatively impact their lives. The objectives of this study were to document the presence of participation restrictions for CSHCN compared to other children and to determine how personal and environmental factors are associated with participation restrictions for CSHCN. Methods The 2007 National Survey of Children’s Health (NSCH) was analyzed to evaluate two participation outcomes for children aged 6–17 years: school attendance and participation in organized activities, and two participation outcomes for children aged 12–17 years: working for pay and volunteering. Adjusted prevalences of participation restrictions were calculated for children with and without special health care needs. Logistic regression was used to identify factors independently associated with participation restrictions for CSHCN. Results After adjustment for sociodemographic characteristics, a larger proportion of CSHCN (27.9%) reported missing more than 5 days of school than other children (15.1%). In contrast, no differences were found for participation in organized activities, working for pay or volunteering. CSHCN with functional limitations were more likely to experience all four types of participation restrictions compared to other CSHCN and non-CSHCN. For CSHCN, the odds of certain participation restrictions were higher for those with functional limitations, in fair/poor health, with depressed mood, living at or near the federal poverty level and living in homes not headed by two parents. Conclusions CSHCN with functional limitations and those with worse health status are at elevated risk of experiencing participation restrictions than other children. Social disadvantage furthers the likelihood that CSHCN will experience participation restrictions.

Do Clinical And Psychosocial Factors Affect Health-Related Quality of Life in Adolescents with Chronic Diseases?

“…Self-perceived pain and the items PSCH/PLTF (proxy for disease's severity) were the significant clinical variables impacting HRQoL, whereas SCL, RES, SR and SSSS were the most significant psychosocial ones. These findings are in accordance with literature, which indicated that perceptions of HRQoL could be influenced by several factors (The KIDSCREEN Group Europe, 2006;Ravens-Sieberer et al, 2001;2005;Houtrow et al, 2012. Also reinforce the suggestions in the literature to assess both disease related and non-disease-related factors (Sawyer et al, 2001), including physical, psychological and social perspectives (WHO, 2012), as well as limitations in ordinary activities (Denny et al, 2014;van der Lee et al, 2007).…”

“…Such findings suggest a dynamic interdependence between these different variables, as stressed out in the literature (The KIDSCREEN Group Europe, 2006;Houtrow et al, 2012;Ravens-Sieberer et al, 2001;2005), although pointing out a higher relevance of non-disease-related factors. Thus, these results support the suggestions in the literature emphasizing more the importance to focus on the disease's impact on psychosocial dimensions, and less on the diagnostic categories/physical dimensions (Denny et al, 2014;Mackner et al, 2012;van der Lee et al, 2007).…”

“…In youths, perceptions of HRQoL can be influenced by a dynamic interdependence between several demographic, personal and social factors (The KIDSCREEN Group Europe, 2006;Ravens-Sieberer et al, 2001;2005;Houtrow, Jones, Ghandour, Strickland, & Newacheck, 2012). Nevertheless, as a child advances in age, psychosocial elements seem to be more important for self-perceived QoL, than biomedical/physical ones (Payot & Barrington, 2011).…”

“When everything changes:” Parent perspectives on the challenges of accessing care for a child with a disability

“…Isolation leads to many negative outcomes for families and youth with disabilities, including low levels of socialemotional support. 17 In many cases, there simply are not mechanisms for supporting their inclusion and engagement. Transportation only makes this lack of availability worse for individuals residing in rural communities.…”

Environmental barriers and subjective health among people with chronic spinal cord injury: A cohort study

“…declining social activity) for those living with a disability. [7][8][9][10][11][12][13][14] Aside from the actual disability or type of injury, a decline in social activity may result from fatigue, 9,11 unfavorable weather conditions (e.g. excessive cold or heat, snow, etc.…”