Development and Refinement of a Caregiver-Completed Quality of Life Measure

Research Study

Parents or primary caregivers of non-communicative children with autism are needed for this study, and will be requested to complete the packet given via the provided URL. The study consists of several measures consisting of mostly multiple-choice responses related to a child’s quality of life, as well as related areas of interest such as familial quality of life and parenting stress. Demographic information will also be collected. Participants with at least a fifth grade reading level, residing in the US, with at least one minor child with autism who is unable to communicate through oral and written means, are required. The measure will be completed via the following URL:

Measures of health and outcome are most often obtained from first-person reports, but the inability of some individuals to communicate, even through writing, necessitates the use of third party reporters. Parents and caregivers, often the closest to children with developmental disability, are an intuitive choice when assessing a child’s QOL. There is a need for measures of QOL that can be completed by a person’s caregiver as a proxy, as well as a need for disability-specific measures. This study hopes to make strides toward achieving this goal.