Drop-out during a randomized trial with adolescents with intellectual disability was associated with participant burden, while drop-out at study exit was associated with carer and household characteristics.
Carer stress and poverty, not teen behavior, predict who quits ID research, so front-load support for young, low-income carers.
01Research in Context
What this study did
The team ran a 12-week RCT with 111 teens who had intellectual disability. They wanted to know who quits research early and why.
Halfway through, some families dropped out. Others left at the final survey. The study tracked carer age, income, education, and stress.
What they found
Young carers, non-parents, and low-income homes were most likely to quit. Mid-study exits were tied to feeling overloaded. Skipping the last survey was tied to social hardship, not teen behavior.
How this fits with other research
Mount et al. (2011) saw parents stop using ABA once training ended when they lacked confidence. McIntyre et al. (2017) show the same pattern earlier: carers who feel swamped leave before training even starts.
McGonigle et al. (2014) surveyed adults with 22q11.2DS and found carers felt high burden and poor services. The new data add that these feelings predict quitting research, not just complaining.
Kozak et al. (2013) and Lancioni et al. (2011) looked at staff, not parents. They found low support and role conflict burn out paid carers. McIntyre et al. (2017) mirror this in families: low support and cash strain burn out unpaid carers and push them to drop out.
Why it matters
If you run parent training or longitudinal studies, screen for carer stress first. Offer shorter visits, travel stipends, or child-care. Check in with younger or low-SES carers early; they are at highest risk of walking away. Keeping them in means better data and better outcomes for the teens you serve.
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02At a glance
03Original abstract
BACKGROUND: People with intellectual disability are difficult to retain in longitudinal studies. Research on determinants of study retention for individual-carer dyads, and their reasons for drop-out, are limited. AIMS: To investigate characteristics associated with drop-out, and to investigate whether characteristics varied by stage of drop-out. METHODS AND PROCEDURES: Data are from an Australian randomized trial with adolescents with intellectual disability living in the community. Characteristics of both the adolescent and their nominated carer were collected at baseline. Carers were sent an exit questionnaire approximately two years after enrolment. OUTCOMES AND RESULTS: Baseline information was available for 566 adolescents: 72(13.0%) withdrew during the study, and 96(17.3%) didn't return exit questionnaires. Characteristics associated with drop-out during the study were being in the intervention group, the carer being younger, and the carer not being one of the adolescent's parents. Characteristics associated with withdrawal at exit were carer having lower education and carer having lower socioeconomic status. No adolescent characteristic was associated with drop-out. CONCLUSIONS AND IMPLICATIONS: Characteristics of drop-outs weren't related to the adolescent and differed according to timing. Drop-out during the study was associated with study burden, whereas characteristics of drop-outs at exit interview were associated with lower social position.
Research in developmental disabilities, 2017 · doi:10.1016/j.ridd.2017.09.015