Factors influencing the research participation of adults with autism spectrum disorders

Article English OPEN
Haas, Kaaren ; Costley, Debra ; Falkmer, Marita ; Richdale, Amanda ; Sofronoff, Kate ; Falkmer, Torbjorn (2016)

The recruitment and retention of adults with autism spectrum disorders (ASD) into research poses particular difficulties; longitudinal studies face additional challenges. To date, factors influencing the participation of adults for ASD research have been unexamined. This article draws on a study conducted in 2014 to identify factors influencing the participation of adults in longitudinal autism research. Quantitative and qualitative data was obtained from 167 participants across Australia in four categories: adults with either high-functioning autism or Asperger syndrome; adults with ASD and an intellectual disability; carers of these adults; and neuro-typical adults. This article includes results for adults with ASD and their carers. Factors influencing participation were found to differ both between and within participant categories. These factors were classified as those arising from a participant’s values, which acted as either a motivator or a deterrent; and those based on convenience, which acted as either an enabler or inhibitor. While helping others was a key motivator for all, participants also sought personal benefits, which differed between categories. Belonging to a research community of like-minded people was also a motivator and enabler. The inconvenience of time and travel required was a key inhibitor; insensitivity to an individual’s needs and preferences for engaging with the world a key deterrent; maximising choice in all aspects of participant involvement a vital enabler; and the use of financial and other extrinsic rewards was found to be problematic.
  • References (23)
    23 references, page 1 of 3

    Balfe, M. & Tantam, D. (2010). A descriptive social and health profile of a community sample of adults and adolescents with Asperger syndrome. BMC Research Notes, 3(300), 1-7.

    Baron-Cohen, S. (2000). Theory of mind and autism: A review. In L. Masters Glidden (Ed.), International Review of Research in Mental Retardation (Vol. 23, pp. 169-184): Academic Press.

    Barton, C. A., May, C., Mészáros, D., Matheson, M. C., Jenkins, M., Giles, G., . . . Abramson, M. J. (2012). Reasons for ongoing participation in a longitudinal cohort study. Australian & New Zealand Journal of Public Health, 36(4), 397-398.

    Mazefsky, C. A. & White, S. W. (2014). Adults With Autism. In F. R. Volkmar, R. Paul, S. J. Rogers, & K. A. Pelphrey (Eds.), Handbook of Autism and Pervasive Developmental Disorders, (Fourth ed.): John Wiley & Sons, Inc.

    Beadle-Brown, J., Ryan, S., Windle, K., Holder, J., Turnpenny, A., Smith, N., Richardson, L. & Whelton, B. (2012). Engagement of people with long-term conditions in health and social care research: Barriers and facilitators to capturing the views of seldom-heard populations: Policy Research Unit in the Quality and Outcomes of person-centred care.

    Harrington, C., Foster, M., Rodger, S., & Ashburner, J. (2014). Engaging young people with Autism Spectrum Disorder in research interviews. British Journal of Learning Disabilities, 42(2), 153-161.

    Howlin, P. (2005). Outcomes in autism spectrum disorders. In F. R. Volkmar, R. Paul, A. Klin, & D. Cohen (Eds.), Handbook of autism and pervasive developmental disorders (3rd ed., Vol. 1: Diagnosis, development, neurobiology, and behavior, pp. 201-220).

    Hunter, J., Corcoran, K., Leeder, S., & Phelps, K. (2012). Appealing to Altruism is Not Enough: Motivators for Participating in Health Services Research. Journal of Empirical Research on Human Research Ethics, 7(3), 84-90.

    Kirkland, S. A., Raina, P. S., Wolfson, C., Strople, G., Kits, O., Dukeshire, S., Angus, L., Szala-Meneok, K., Uniat, J., Kesjavarz, H., Furlini, L. & Pelletier, A. (2009). Exploring the Acceptability and Feasibility of Conducting a Large Longitudinal Population-Based Study in Canada. Canadian Journal of Aging, 28(3), 231-242.

    Lennox, N., Taylor, M., Rey-Conde, T., Bain, C., Purdie, D. M., & Boyle, F. (2005). Beating the barriers: recruitment of people with intellectual disability to participate in research. Journal of Intellectual Disability Research: JIDR, 49(Pt 4), 296-305.

  • Similar Research Results (1)
  • Metrics
    No metrics available
Share - Bookmark