Factors Influencing the Research Participation of Adults with Autism Spectrum Disorders

doi:10.1007/s10803-016-2708-6

. 2016 May;46(5):1793-805.

doi: 10.1007/s10803-016-2708-6.

Factors Influencing the Research Participation of Adults with Autism Spectrum Disorders

Kaaren Haas¹, Debra Costley², Marita Falkmer³, Amanda Richdale⁴, Kate Sofronoff⁵, Torbjörn Falkmer³

Affiliations

¹ Autism Spectrum Australia, 14 Aquatic Drive, Frenchs Forest, NSW, 2086, Australia. khaas@autismspectrum.org.au.
² Autism Spectrum Australia, 14 Aquatic Drive, Frenchs Forest, NSW, 2086, Australia.
³ School of Occupational Therapy and Social Work, Faculty of Health Sciences, Curtin University, Bentley, WA, 6102, Australia.
⁴ Olga Tennison Autism Research Centre, La Trobe University, Bundoora, VIC, 3086, Australia.
⁵ School of Psychology, The University of Queensland, St Lucia, QLD, 4072, Australia.

PMID: 26810436
DOI: 10.1007/s10803-016-2708-6

Free article

Factors Influencing the Research Participation of Adults with Autism Spectrum Disorders

Kaaren Haas et al. J Autism Dev Disord. 2016 May.

Free article

. 2016 May;46(5):1793-805.

doi: 10.1007/s10803-016-2708-6.

Authors

Kaaren Haas¹, Debra Costley², Marita Falkmer³, Amanda Richdale⁴, Kate Sofronoff⁵, Torbjörn Falkmer³

Affiliations

¹ Autism Spectrum Australia, 14 Aquatic Drive, Frenchs Forest, NSW, 2086, Australia. khaas@autismspectrum.org.au.
² Autism Spectrum Australia, 14 Aquatic Drive, Frenchs Forest, NSW, 2086, Australia.
³ School of Occupational Therapy and Social Work, Faculty of Health Sciences, Curtin University, Bentley, WA, 6102, Australia.
⁴ Olga Tennison Autism Research Centre, La Trobe University, Bundoora, VIC, 3086, Australia.
⁵ School of Psychology, The University of Queensland, St Lucia, QLD, 4072, Australia.

PMID: 26810436
DOI: 10.1007/s10803-016-2708-6

Abstract

Recruiting adults with autism spectrum disorders (ASD) into research poses particular difficulties; longitudinal studies face additional challenges. This paper reports on a mixed methods study to identify factors influencing the participation in longitudinal autism research of adults with ASD, including those with an intellectual disability, and their carers. Common and differentiating factors influencing the research participation of participants are identified and discussed. Factors influencing participation were found to differ both between and within participant categories. We propose a dichotomy whereby factors influencing research participation can be classified as those arising from a participant's values, which act as either a motivator or a deterrent; and those based on convenience, which act as either an enabler or inhibitor. These findings are applicable to research studies that seek to recruit adults with ASD as participants.

Keywords: Asperger syndrome; Autism; Incentive; Longitudinal studies; Motivation; Research participation; Research recruitment.

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References

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1. Qual Health Res. 2007 Nov;17(9):1292-303 - PubMed
1. J Intellect Disabil Res. 2010 Mar;54(3):187-93 - PubMed
1. J Intellect Disabil Res. 2011 Sep;55(9):918-32 - PubMed
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[1] J Autism Dev Disord. 2008 Jan;38(1):72-85 - PubMed

[2] J Autism Dev Disord. 2008 Jan;38(1):72-85 - PubMed

[3] Qual Health Res. 2007 Nov;17(9):1292-303 - PubMed

[4] Qual Health Res. 2007 Nov;17(9):1292-303 - PubMed

[5] J Intellect Disabil Res. 2010 Mar;54(3):187-93 - PubMed

[6] J Intellect Disabil Res. 2010 Mar;54(3):187-93 - PubMed

[7] J Intellect Disabil Res. 2011 Sep;55(9):918-32 - PubMed

[8] J Intellect Disabil Res. 2011 Sep;55(9):918-32 - PubMed

[9] J Intellect Disabil Res. 2005 Apr;49(Pt 4):296-305 - PubMed

[10] J Intellect Disabil Res. 2005 Apr;49(Pt 4):296-305 - PubMed

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Factors Influencing the Research Participation of Adults with Autism Spectrum Disorders

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Factors Influencing the Research Participation of Adults with Autism Spectrum Disorders

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