Changes in the quality of life of persons with profound intellectual and multiple disabilities following community transition: A Canadian study

Abstract

Background: The goal of this research study was to measure changes in the quality of life (QoL) of adults with profound intellectual and multiple disabilities (PIMD) and complex care needs following their transition from a large institutional residence to smaller community homes in Central Canada. Method: A pre- post-transition quasi-experimental time-series longitudinal study design was implemented to measure the impact of community transition on the QoL of study participants. QoL was assessed in eight domains (self-determination; emotional, physical, and material wellbeing; rights; personal development; social inclusion; and interpersonal relations) by proxy at two time points (Time 1: pre-transition and Time 2: at least 6 months post-transition) using the standardized tool San Martin Scale. The study group included 33 persons with PIMD and complex care needs (20 men [60%] and 13 women [40%]) aged 24–55 years (M = 42.52; SD = 8.07). Paired-samples t-test was conducted to determine significant changes in the QoL of study participants following their community transition. Results: Between pre- and post-transition, study participants experienced significant improvements in all the eight domains of QoL evaluated as well as in global QoL. Mean differences ranged from 5.67 (SD = 5.16, t(32) = 6.31, p = .001) for rights to 1.73 (SD = 3.10, t(32) = 3.19, p = .003) for physical wellbeing. Mean global QoL improved significantly from 99.97 (SD = 16.54) pre-transition to 120.42 (SD = 10.54) post-transition (Mdiff = 17.55, t(32) = 6.69, p = .001). Conclusions: This longitudinal study provides evidence of improved QoL for persons with PIMD following deinstitutionalization.