Bertelli, M. O., Bianco, A., Rossi, A., Mancini, M., La Malfa, G., & Brown, I. (2019). Impact of severe intellectual disability on proxy instrumental assessment of quality of life. Journal of Intellectual & Developmental Disability, 44(3), 272–281. https://doi.org/10.3109/13668250.2017.1350835

Cedarville University

- Higher adaptive skills 
  - Associated with an improved QOL
- Increased age
  - Associated with a lower QOL
- Parent health and psychological functioning

Factors Related to Quality of Life of Children with Severe Developmental Disabilities (SDD)

It is a complex issue because individuals have language and communication deficits,  and significantly impaired abstract thinking. These persons also possess high levels of response bias, especially through acquiescence and recency effects. Typically, proxies use systematic observation and behavioral repertories to mediate self assessment.

Determining QOL in People with Severe ID

Multiple domains can impact the child's QOL 
This Includes: 
- Physical Pain and Discomfort
- Self Confidence
- Limiting Independence
- Limiting Inclusion

How Concurrent Complex Physical & Health Concerns Affect QOL of children with SDD

- Children with SDD have an increased need for social support and special services, especially due to their physical restrictions.
- These children have increased personnel support at school.
-  Deficits in the quality of service provided by the school can negatively impact the child's quality of life.

How School Impacts the QOL of Children with SDD

Ncube, B. L., Perry, A., and Weiss, J. A. (2018) The quality of life of children with severe developmental disabilities. Journal of Intellectual Disability Research, 62: 237–244. doi: 10.1111/jir.12460.

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