Literature DB >> 26810436

Factors Influencing the Research Participation of Adults with Autism Spectrum Disorders.

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

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.

Entities:  

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

Mesh:

Year:  2016        PMID: 26810436     DOI: 10.1007/s10803-016-2708-6

Source DB:  PubMed          Journal:  J Autism Dev Disord        ISSN: 0162-3257


  21 in total

Review 1.  Reaching and engaging hard-to-reach populations with a high proportion of nonassociative members.

Authors:  Sue Thompson; David Phillips
Journal:  Qual Health Res       Date:  2007-11

2.  Asperger syndrome and autism: a comparative longitudinal follow-up study more than 5 years after original diagnosis.

Authors:  Mats Cederlund; Bibbi Hagberg; Eva Billstedt; I Carina Gillberg; Christopher Gillberg
Journal:  J Autism Dev Disord       Date:  2007-03-06

3.  Beating the barriers: recruitment of people with intellectual disability to participate in research.

Authors:  N Lennox; M Taylor; T Rey-Conde; C Bain; D M Purdie; F Boyle
Journal:  J Intellect Disabil Res       Date:  2005-04

4.  Research in general practice: a survey of incentives and disincentives for research participation.

Authors:  Henry Brodaty; Louisa Hr Gibson; Melissa L Waine; Allan M Shell; Ruth Lilian; Constance Dimity Pond
Journal:  Ment Health Fam Med       Date:  2013-09

Review 5.  Participation in intellectual disability research: a review of 20 years of studies.

Authors:  S Cleaver; H Ouellette-Kuntz; A Sakar
Journal:  J Intellect Disabil Res       Date:  2010-02-08

6.  Comparing residential programmes for adults with autism spectrum disorders and intellectual disability: outcomes of challenging behaviour and quality of life.

Authors:  F Gerber; S Bessero; B Robbiani; D S Courvoisier; M A Baud; M-C Traoré; P Blanco; M Giroud; G Galli Carminati
Journal:  J Intellect Disabil Res       Date:  2011-08-01

7.  Recruitment to intellectual disability research: a qualitative study.

Authors:  L Nicholson; M Colyer; S A Cooper
Journal:  J Intellect Disabil Res       Date:  2012-06-06

Review 8.  Cognitive, language, social and behavioural outcomes in adults with autism spectrum disorders: a systematic review of longitudinal follow-up studies in adulthood.

Authors:  Iliana Magiati; Xiang Wei Tay; Patricia Howlin
Journal:  Clin Psychol Rev       Date:  2013-12-04

Review 9.  A road map for the recruitment and retention of older adult participants for longitudinal studies.

Authors:  Janet Bonk
Journal:  J Am Geriatr Soc       Date:  2010-10       Impact factor: 5.562

Review 10.  Systematic review identifies number of strategies important for retaining study participants.

Authors:  Karen A Robinson; Cheryl R Dennison; Dawn M Wayman; Peter J Pronovost; Dale M Needham
Journal:  J Clin Epidemiol       Date:  2007-05-10       Impact factor: 6.437

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  9 in total

1.  Brief Report: Personality Mediates the Relationship between Autism Quotient and Well-Being: A Conceptual Replication using Self-Report.

Authors:  Jonathan D Rodgers; Jennifer Lodi-Smith; Patrick L Hill; Seth M Spain; Christopher Lopata; Marcus L Thomeer
Journal:  J Autism Dev Disord       Date:  2018-01

2.  Meeting FACES: Preliminary Findings from a Community Workshop for Minority Parents of Children with Autism in Central North Carolina.

Authors:  Jamie N Pearson; Amanda L Traficante; Lauren M Denny; Kayla Malone; Evadine Codd
Journal:  J Autism Dev Disord       Date:  2020-01

3.  Making Research Possible: Barriers and Solutions For Those With ASD and ID.

Authors:  Audrey Thurm; Alycia Halladay; David Mandell; Melissa Maye; Sarah Ethridge; Cristan Farmer
Journal:  J Autism Dev Disord       Date:  2021-10-30

4.  Guidelines for conducting research studies with the autism community.

Authors:  Emma Gowen; Rachel Taylor; Thomas Bleazard; Anat Greenstein; Peter Baimbridge; Daniel Poole
Journal:  Autism Policy Pract       Date:  2019-09-09

5.  Autism Heterogeneity in a Densely Sampled U.S. Population: Results From the First 1,000 Participants in the RI-CART Study.

Authors:  Carolyn E B McCormick; Brian C Kavanaugh; Danielle Sipsock; Giulia Righi; Lindsay M Oberman; Daniel Moreno De Luca; Ece D Gamsiz Uzun; Carrie R Best; Beth A Jerskey; Joanne G Quinn; Susan B Jewel; Pei-Chi Wu; Rebecca L McLean; Todd P Levine; Hasmik Tokadjian; Kayla A Perkins; Elaine B Clarke; Brittany Dunn; Alan H Gerber; Elena J Tenenbaum; Thomas F Anders; Stephen J Sheinkopf; Eric M Morrow
Journal:  Autism Res       Date:  2020-01-20       Impact factor: 5.216

6.  Cohort profile: the Australian Longitudinal Study of Adults with Autism (ALSAA).

Authors:  Samuel Arnold; Kitty-Rose Foley; Ye In Jane Hwang; Amanda L Richdale; Mirko Uljarevic; Lauren P Lawson; Ru Ying Cai; Torbjorn Falkmer; Marita Falkmer; Nick G Lennox; Anna Urbanowicz; Julian Trollor
Journal:  BMJ Open       Date:  2019-12-04       Impact factor: 2.692

Review 7.  Strategies for Research, Practice, and Policy for Autism in Later Life: A Report from a Think Tank on Aging and Autism.

Authors:  Stephen M Edelson; David B Nicholas; Kevin P Stoddart; Margaret B Bauman; Laurie Mawlam; Wenn B Lawson; Caroline Jose; Rae Morris; Scott D Wright
Journal:  J Autism Dev Disord       Date:  2021-01

8.  The Relationship of Age with the Autism-Spectrum Quotient Scale in a Large Sample of Adults.

Authors:  Jennifer Lodi-Smith; Jonathan D Rodgers; Valeria Marquez Luna; Sarah Khan; Caleb J Long; Karl F Kozlowski; James P Donnelly; Christopher Lopata; Marcus L Thomeer
Journal:  Autism Adulthood       Date:  2021-06-07

9.  A survey study of the attitudes and experiences of adults with intellectual disability regarding participation in research.

Authors:  N E Conroy; K E McDonald; R S Olick
Journal:  J Intellect Disabil Res       Date:  2021-08-09
  9 in total

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