The assessment of the quality of life of adults with intellectual disability: the use of self-report and report of others assessment strategies.

Balboni et al. (2013) asked adults with intellectual disability about their quality of life.

They also asked caregivers the same questions.

The goal was to see if caregiver answers match the adults’ own answers.

Both self-report and caregiver reports were reliable.

When an adult could not answer, the caregiver’s estimate was a valid stand-in.

Using both sources gave the fullest picture.

Fujiura (2012) argued you should always adapt the interview so the person can self-report. Giulia shows that when that is impossible, a proxy is still trustworthy.

Pickard et al. (2022) later proved that with picture apps and simple wording, many adults can complete the survey alone. Together the three papers chart a path: try self-report first, adapt it, and keep caregiver report as backup.

Nevin et al. (2005) warned that QOL is multidimensional; Giulia’s two-source method answers that call by capturing the client’s voice plus the caregiver’s view.

You can stop worrying that proxy QOL data is “second-best.” Collect both self and caregiver reports during intake. If the client can’t respond, the caregiver score is still solid evidence for goal setting and program review.