Promoting self-determination of persons with severe or profound intellectual disabilities: a systematic review and meta-analysis.
For clients with severe or profound ID, tech-aided and multi-part self-determination lessons give only small, spotty gains—so pair them with strong reinforcement and track each step.
01Research in Context
What this study did
The team looked at 76 studies that tried to boost self-determination in teens and adults with severe or profound intellectual disability. They pulled every experiment that taught choice-making, problem-solving, or self-management. Then they ran a meta-analysis to see how big the gains really were.
Most studies used tablets, pictures, or staff prompts to let clients pick items, tasks, or break times. A few added rewards for independent moves. The reviewers checked if the effects lasted and if different methods mattered.
What they found
Across all studies the average benefit was small and the numbers were all over the map. Technology-based tools and multi-step packages helped a little, but single tricks like simple choice cards barely moved the needle.
In plain words: you can nudge choice-making and independence upward, yet the climb is slow and uneven.
How this fits with other research
Cryan et al. (1996) first mapped choice research for this population. Their narrative showed promise; Aller et al. (2023) now quantifies that promise as modest. The story did not change direction—only gained harder numbers.
Leif et al. (2026) extends the finding. They took apart self-monitoring packages and learned that reinforcement for real work, not the monitoring sheet, drives gains. This helps explain why B et al. saw small effects: many prior studies forgot to reinforce the actual independent response.
Kestner et al. (2023) reviewed child choice studies but did not pool outcomes. Their paper includes kids with milder needs, so it sits beside, not against, the new severe-ID data.
Why it matters
If you serve adults or teens with severe ID, keep teaching choice and self-management, but keep expectations realistic. Stack two or three evidence-based pieces—clear prompts, immediate reinforcement, and a way for the client to record or signal the choice. Check data weekly; drop parts that do not add value. Small gains still build dignity and can reduce hand-over-hand prompting over time.
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02At a glance
03Original abstract
People with severe or profound intellectual disabilities (IDs) are believed to experience low levels of self-determination, which negatively affects their quality of life. This systematic review describes existing interventions aimed to support self-determination or components thereof and synthesises evidence on the interventions' effects. Eight databases were searched, turning in 76 articles for the final inclusion. The studies included 631 people with severe or profound IDs of whom 81% had multiple disabilities. The studies had quantitative (k = 63), qualitative (k = 7) and mixed study designs (k = 6). Sample sizes ranged from 1 to 95 and a study quality index ranged from 40% to 100%. While many studies included several self-determination components and intervention elements, overall, 53 studies focused on the self-determination components choice making, independence and problem solving. Other studies included increased assistance (k = 14); engagement in meaningful activities and relationships (k = 10); community and societal participation (k = 5); supporting the basic psychological needs autonomy, competence and relatedness (k = 4); individuality and dignity (k = 3); supportive decision-making (k = 2); self-advocacy (k = 2); and motivation (k = 1). Intervention elements included technology (k = 33); multiple-component training packages, goal setting, empowerment tactics and applied behaviour principles (k = 17); training of caretakers (k = 17); changes in policies and living arrangements (k = 9); supporter responsiveness (k = 1); drama therapy and storytelling (k = 1); electrical wheelchair training (k = 1); joint painting procedure (k = 1); youth advocacy project (k = 1); and multiliteracies training (k = 1). Reflecting the heterogeneity of the field, only four studies tested a similar intervention for this population and were eligible for the meta-analysis, which combined showed a small effect size of 2.69. Further research is needed to explore relationships between individuals with severe or profound IDs and their relatives and health care professionals and create supportive environments that meet their basic psychological needs.
Journal of intellectual disability research : JIDR, 2023 · doi:10.1111/jir.13036