Factors Influencing the Research Participation of Adults with Autism Spectrum Disorders

Haas, Kaaren; Costley, Debra; Falkmer, Marita; Richdale, Amanda L.; Sofronoff, Kate; Falkmer, Torbjörn

doi:10.1007/s10803-016-2708-6

Cited by 60 publications

(44 citation statements)

References 30 publications

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“…Interestingly, the second positive behavioural belief associated with participation in the NutriQuébec project pertained to the opportunity to improve one's health. This is in line with previous studies on altruism, which highlighted that pure altruism is not always observed and that individuals expect some form of reward in exchange for their time and participation [38,42]. This suggests that framing participation in the Web-based NutriQuébec project as an altruistic act may be a promising strategy to recruit individuals with a low SES.…”

Section: Discussionsupporting

confidence: 90%

A cross-sectional survey examining motivation and beliefs to participating in a web-based prospective cohort study on nutrition and health among individuals with a low socioeconomic status

et al. 2020

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Background: Prospective cohort studies may support public health efforts in reducing health inequalities. However, individuals with a low socioeconomic status (SES) are generally underrepresented in health research. This study aimed to examine the intention and determinants of intention of individuals with a low SES towards participation in a Web-based prospective project on nutrition and health (NutriQuébec) in order to develop recruitment and retention strategies. Methods: A cross-sectional survey based on the Theory of planned behaviour was conducted in the Province of Québec, Canada. Low SES individuals (high school or less and annual household income < $55,000 CAN) were recruited through a Web panel of a polling firm to assess intention, attitude, subjective norm and perceived behavioural control (PBC) towards participation in the NutriQuébec project. Linear regression and logistic regression analyses were conducted.

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Section: Discussionsupporting

confidence: 90%

A cross-sectional survey examining motivation and beliefs to participating in a web-based prospective cohort study on nutrition and health among individuals with a low socioeconomic status

et al. 2020

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“…Participants were given the option to complete the interview by phone, text message, or email to increase accessibility and acceptability of the research. 18 The portion of the interview discussed here included questions on three topics: autism as a social identity, affiliation with an autism community, and practices around disclosing the autism diagnosis. The interview guide is included in the Appendix.…”

Section: Methodsmentioning

confidence: 99%

“I Just Want Them to See Me As…Me”: Identity, Community, and Disclosure Practices Among College Students on the Autism Spectrum

Frost

Bailey

Ingersoll

2019

Autism in Adulthood

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Background: The purpose of this project was to understand how college students on the autism spectrum integrate their diagnosis into their identity, whether they connect with a broader ''autism community,'' and when and why they disclose their diagnosis to other people. Methods: Twenty participants completed semistructured interviews by phone, text message, or email. An inductive approach was used to generate codes, and results were synthesized via thematic analysis, theme counts, comparing and contrasting cases, and examining outliers. Results: Across participants and interview topics, the students in our study expressed a desire to be understood and known genuinely by other people. Interviews revealed that autistic identity is complex and variable across individuals. Most of the students in our study did not feel part of a broader autism community, although several reported that some of their close friends were on the spectrum as well. Our participants rarely disclosed their autism to other people, and this decision was often informed by whether the disclosure would support or inhibit understanding. Conclusions: Results suggest there is a need for neurotypical people to be more accepting, affirming, and empathetic in their interactions with neurodivergent people. In addition, our results suggest that autistic college students may not participate in services that explicitly connect groups of students on the spectrum or require disclosure of their diagnosis. College students with autism should be involved in the development of college supports and services that are consistent with their values and disclosure practices.

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“…The unique social-communicative abilities associated with autism spectrum can contribute to the reluctance of some adults with ASD to be involved with new people and experiences or to disclose personal information (Haas, et al, 2016). In addition, some adults are reluctant to identify with a particular condition (autism), as they do believe it was a childhood condition, something they have "grown out of."…”

Section: Human Subjects Considerationmentioning

confidence: 99%

“…Each informant was evaluated to best ascertain their communication needs. According to Haas (2016), offering choice, flexibility and sensitivity are likely to be important success factors in engaging adults with ASD in research.…”

Section: Human Subjects Considerationmentioning

confidence: 99%

Autism Spectrum Disorders and the Healthcare Experiences of Aging Adults

Joseph-Kent

2019

Research in the Sociology of Health Care

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This qualitative, descriptive study illuminates the experiences of adults diagnosed with Autism Spectrum Disorders (ASD) and Intellectual Disabilities (ID) and their challenges and successes in receiving quality healthcare services. This population is challenged by a triple jeopardy of age, intellectual disability and autism symptomology (social/sensory/behavioral/communication challenges) and may experience negative health outcomes and suboptimal relationships with healthcare providers due to their communication deficits and behavioral impairments. Additionally, this population may suffer from increased morbidity and even premature death. Through semi-structured interviews with adults diagnosed with ASD and/or their guardians/caregivers, this study explored their perspectives and impressions of their healthcare experiences for 12 adults. In addition to their ASD diagnosis, many of the adults were impacted by major physical and mental health co-morbidities that require regular medical attention such as epilepsy, diabetes, sleep disturbances, depression, sedentary lifestyle and gastrointestinal problems. Individuals with developmental disabilities, such as ASD, often experience health issues associated with aging at earlier ages and at higher rates than the general population. The goals of this project were to understand how well their health care providers understand autism, including the sensory, behavioral, social and communication needs required of an adult with autism; explore their experience with how well their care is coordinated between primary health care and other specialty or ancillary services, and identify factors which could impact access to care; and to discover what other barriers (e.g. access to available health services, policy concerns, such as health insurance and residency location, advocacy, aging guardians and others) which may potentially influence the health for ASD adults. Some of the adults interviewed experienced negative health outcomes and suboptimal relationships with healthcare providers; others seemed to have very positive relationships, with good preventive care and monitoring of health. Clinical and communications accommodations were absolutely necessary to make healthcare provision more comfortable for this population of adults. Coordination of care was seen as an imperative, with most family members taking on this responsibility, with support from residential caregivers and some primary care physicians. Barriers to accessing healthcare services were identified, including insurance concerns. The societal and healthcare costs of adults with ASD/ID are growing and are anticipated to be significant. This challenge will likely be further exacerbated given there are few trained healthcare providers who are prepared or dedicated to serve this population. Continuing to deepen the healthcare industry's understanding of the characteristics and circumstances that enable these positive relationships and successful outcomes will be critical in the future.

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Factors Influencing the Research Participation of Adults with Autism Spectrum Disorders

Cited by 60 publications

References 30 publications

A cross-sectional survey examining motivation and beliefs to participating in a web-based prospective cohort study on nutrition and health among individuals with a low socioeconomic status

A cross-sectional survey examining motivation and beliefs to participating in a web-based prospective cohort study on nutrition and health among individuals with a low socioeconomic status

“I Just Want Them to See Me As…Me”: Identity, Community, and Disclosure Practices Among College Students on the Autism Spectrum

Autism Spectrum Disorders and the Healthcare Experiences of Aging Adults

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