Quality of life trajectories in persons with intellectual and developmental disabilities undergoing community...

Strong evidence suggests that, compared to congregate care, dispersed community living offers significant quality of life (QoL) benefits for individuals with intellectual and developmental disabilities. However, it is still unclear whether these improvements apply to all domains of QoL or if they remain stable long term.

This study investigated QoL trajectories across four time points over a 4-year period (2019-2022) in a cohort of Canadian adults with severe-to-profound intellectual and developmental disabilities and extensive support needs who transitioned from an institutional setting to dispersed community group homes in Central Canada.

A repeated measures quasi-experimental time-series study, without control group was used to address the stated research objective. Four waves of QoL data on 59 study participants was collected using the proxy-report standardized assessment tool San Martin Scale and analyzed at both the individual and aggregate levels using linear mixed-effects models.

The mean QoL scores of the study cohort across eight QoL domains changed significantly across timepoints, with the highest scores at the first post-transition assessment and a general decline towards pre-transition levels by the last assessment. Global QoL followed a similar pattern. Notably, some QoL domains showed unique patterns of change. Individual QoL trajectories were highly variable, with some participants experiencing transient improvements and others maintaining sustained gains.

Continued efforts to promote the QoL of persons with intellectual and developmental disabilities should be rooted in a transformative social justice framework emphasizing equity, inclusion, and health and well-being as universal human rights.