Supporting participation: Facilitating inclusion of rural Australians aging with intellectual disabilities in research using validated survey tools

Abstract

Aim: To determine the feasibility and costs of supporting rural people aging with intellectual disabilities (ID) to complete validated survey tools. Method: Community-based organisations in rural New South Wales identified eligible survey participants, defined as people aged over 59 living in the community either with or without life-long ID. Tools included SF12, Duke Social Support Index (DSSI) and Cummins' Personal Wellbeing Index. Online and paper-based surveys were completed by the mainstream cohort. A pilot indicated participation by people with ID was only feasible through 1:1 interviews due to language complexity in some tools. Results: Researchers surveyed 70 people with ID from 12 geographically diverse towns, with 164 age-peer surveys independently completed. Costs of survey administration were calculated for each mode. Excluding researcher salaries, the average cost of collecting the rural ID cohort was $101.33 and $11.96 for age-peer paper surveys. Conclusions: Supporting the inclusion of rural people aging with ID in research using validated survey tools is both feasible and desirable. Recommendations include that projects consider the cost and methodological impacts of each mode during design.