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.

Cedarville University

Quality of life outcomes are a result of a combination of characteristics. This includes the child's diagnosis and contextual factors (Ex: school satisfaction).

Quality of Life of Individuals with Intellectual and Developmental Disabilities

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

The impact on the health and quality of life of caregivers of children with disabilities varies on many factors including:

- sociodemographic backgrounds

- disability-factors

- psychosocial variables

How Quality of Life (QOL) varies between Caregivers of Individuals with Intellectual and Developmental Disabilities

When a child has a SDD and an autism diagnosis, there is an increased likelihood that the child will experience maladaptive behaviors. This results in an increased potential for poor QOL outcomes.

How a Diagnosis of ASD Complicates the QOL Outcomes of Children with SDD

- 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)

Siblings of Individuals with Disabilities

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

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