Ethical Challenges Related to Participation of Adolescents and Young Adults with Intellectual Disability in Research

This chapter lays out the ethical challenges and proactive strategies involved in balancing the rights of adolescents and young adults (AYAs) with intellectual disability (ID) to participate in clinical research with the obligation to protect a potentially vulnerable population from research harms. The chapter presents an illustrative case study involving a young adult research participant with Down syndrome whose capacity and legal authority to consent to participate in a study was questioned after an exchange with a staff member aroused suspicion about potential misconduct. Techniques to enhance participation, especially in the consent or assent processes, of AYAs with ID in research are outlined. Both individual-level and structural-level protections to ensure ongoing voluntary participation, relevant for both study teams and institutional review boards, are recommended.

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Teenagers' Socio and Cultural Values

Analyzing the Cultural Diversity of Consumers in the Global Marketplace - Advances in Marketing, Customer Relationship Management, and E-Services ◽

10.4018/978-1-4666-8262-7.ch004 ◽

2015 ◽

pp. 60-81

Author(s):

Georg Dutschke ◽

Julio Garcia del Junco ◽

Francisco Espansandín-Bustelo ◽

Mariana Dutschke ◽

Beatriz Palacios Florencio

Keyword(s):

Young Adults ◽

Cultural Values ◽

Youth Unemployment ◽

Cultural Dimensions ◽

Adolescents And Young Adults ◽

Exploratory Research ◽

Individual Level ◽

The Poor ◽

Poor Academic Performance ◽

Very High

Investigations related to national culture and young are becoming more important (Brown et al., 2002; Larson, 2011). Gelhaar et al. (2007) state that “there is great concern about the poor academic performance and wiling to entrepreneurship of the adolescents and young adults in European countries, especially in the southern regions, where youth unemployment is very high”. For Iberia it's very important that adolescents and young adults have the want to become entrepreneurs, by developing new projects but, mainly, by having entrepreneurship as a purpose for their professional life. Entrepreneurship should be developed both at an individual level and within the organizations. It´s key to achive success, since originates innovation, both incremental and disruptive. This exploratory research aims to identify the relations between teenagers' socio and cultural values and their want to become entrepreneurs. In concrete, if socio and cultural dimensions identified by Hofstede and Minkov (2010) are related with the want to become entrepreneur.

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Remote Home-Based Virtual Training of Functional Living Skills for Adolescents and Young Adults With Intellectual Disability: Feasibility and Preliminary Results

Frontiers in Psychology ◽

10.3389/fpsyg.2018.01730 ◽

2018 ◽

Vol 9 ◽

Author(s):

Simonetta Panerai ◽

Valentina Catania ◽

Francesco Rundo ◽

Raffaele Ferri

Keyword(s):

Young Adults ◽

Intellectual Disability ◽

Adolescents And Young Adults ◽

Virtual Training ◽

Preliminary Results ◽

Home Based ◽

Living Skills ◽

Functional Living Skills

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Behind the Reasons: The Relationship Between Adolescent and Young Adult Mental Health Risk Factors and Exposure to Season One of Netflix’s 13 Reasons Why

Frontiers in Human Dynamics ◽

10.3389/fhumd.2021.600146 ◽

2021 ◽

Vol 3 ◽

Author(s):

Jabari Miles Evans ◽

Alexis R. Lauricella ◽

Drew P. Cingel ◽

Davide Cino ◽

Ellen Ann Wartella

Keyword(s):

Mental Health ◽

Young Adults ◽

Young Adult ◽

Social Anxiety ◽

The United States ◽

Individual Characteristics ◽

Adolescents And Young Adults ◽

Adolescent And Young Adult ◽

Individual Level ◽

Health Related

With increasing media choice, particularly through the rise of streaming services, it has become more important for empirical research to examine how youth decide which programs to view, particularly when the content focuses on difficult health topics such as suicide. The present study investigated why adolescents and young adults chose to view or not view season 1 of 13 Reasons Why and how individual-level variables related to adolescents’ and young adults’ viewing. Using survey data gathered from a sample of 1,100 adolescents and young adult viewers and non-viewers of the series in the United States, we examined how participants’ resilience, loneliness, and social anxiety related to whether participants viewed the first season or not. Our descriptive results indicate that adolescents who watched the show reported that it accurately depicted the social realities of their age group, they watched it because friends recommended it, and they found the subject matter to be interesting. Non-viewers reported that they chose not to view the show because the nature of the content was upsetting to them. In addition, results demonstrated that participants’ social anxiety and resilience related to participants’ viewing decisions, such that those with higher social anxiety and higher resilience were more likely to report watching season 1. Together, these data suggest that youth make intentional decisions about mental health-related media use in an attempt to choose content that is a good fit for based on individual characteristics.

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Ethical Challenges Community-Based Researchers and Community-Based Organizations Face

The Oxford Handbook of Methods for Public Scholarship ◽

10.1093/oxfordhb/9780190274481.013.4 ◽

2019 ◽

pp. 101-120

Author(s):

Margaret R. Boyd

Keyword(s):

Higher Learning ◽

Institutional Review Boards ◽

Ethical Challenges ◽

Community Based ◽

Community Partners ◽

Community Based Research ◽

Professional Boundaries ◽

Community Based Organizations ◽

Institutional Review ◽

Institutions Of Higher Learning

Community-based research (CBR) has grown rapidly since its origins and has helped to make substantial and positive changes within communities. The goals of CBR are to collaborate with community-based organizations (CBOs) and community partners in culturally sensitive, synergistic relationships to address community-defined problems and find community-relevant solutions. This chapter focuses on the ethical challenges that community-based researchers and CBOs face when working with traditional Institutional Review Boards (IRBs) to guide and evaluate their projects. Traditional IRB standards regarding informed consent, personal and professional boundaries, and decisions regarding risks and benefits to communities need to change. Academic researchers, community partners, IRBs, and institutions of higher learning must work together so that community-based researchers and CBOs can continue to work in community and communities for social justice and social change.

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Does the Development of Syntax Comprehension Show a Premature Asymptote Among Persons With Down Syndrome?A Cross-Sectional Analysis

American Journal on Intellectual and Developmental Disabilities ◽

10.1352/1944-7558-124.2.131 ◽

2019 ◽

Vol 124 (2) ◽

pp. 131-144

Author(s):

Bruno Facon ◽

David Magis

Keyword(s):

Young Adults ◽

Down Syndrome ◽

Intellectual Disability ◽

Early Adulthood ◽

Adolescents And Young Adults ◽

Chronological Age ◽

Cognitive Level ◽

Cross Sectional ◽

Cross Sectional Analysis ◽

Sectional Analysis

AbstractUncertainty persists regarding the post-childhood trajectory of syntactic acquisition of persons with Down syndrome (DS). In some studies, asymptote is reached in the early teens, whereas others find syntax continuing to develop at least into early adulthood. This study addressed the issue using a cross-sectional approach. Receptive syntax and vocabulary were tested in 62 children, adolescents and young adults with DS matched on chronological age and cognitive level with 62 participants with intellectual disability (ID) of undifferentiated etiology. On both tests there were significant effects of chronological age and diagnosis, but the chronological age × diagnosis interactions were nonsignificant. We concluded that comprehension of vocabulary and syntax does not asymptote prematurely in individuals with DS relative to those with other forms of ID.

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Self-Reported Participation in Sport/Exercise Among Adolescents and Young Adults With and Without Mild to Moderate Intellectual Disability

Journal of Physical Activity and Health ◽

10.1123/jpah.2017-0035 ◽

2018 ◽

Vol 15 (4) ◽

pp. 247-254 ◽

Cited By ~ 3

Author(s):

Janet Robertson ◽

Eric Emerson ◽

Susannah Baines ◽

Chris Hatton

Keyword(s):

Young Adults ◽

Intellectual Disability ◽

Adolescents And Young Adults ◽

Moderate Intellectual Disability

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Understanding How Clinicians Use a New Web-based Tool for Disseminating Evidence-Based Practices for the Treatment of PTSD: The PTSD Clinicians Exchange

Military Medicine ◽

10.1093/milmed/usz313 ◽

2020 ◽

Vol 185 (Supplement_1) ◽

pp. 286-295

Author(s):

Julia L Coleman ◽

Lisa Marceau ◽

Rebekah Zincavage ◽

Ashley M Magnavita ◽

James Ambrosoli ◽

...

Keyword(s):

New England ◽

Controlled Trial ◽

Institutional Review Boards ◽

Great Promise ◽

Post Traumatic Stress ◽

Web Based ◽

Individual Level ◽

Participant Engagement ◽

Institutional Review ◽

Qualitative Feedback

Abstract Introduction Web-based interventions hold great promise for the dissemination of best practices to clinicians, and investment in these resources has grown exponentially. Yet, little research exists to understand their impact on intended objectives. Materials & Methods The Post-Traumatic Stress Disorder (PTSD) Clinicians Exchange is a website to support clinicians treating veterans and active duty military personnel with PTSD, evaluated in a randomized controlled trial (N = 605). This manuscript explores how a subset of clinicians, those who utilized the intervention (N = 148), engaged with it by examining detailed individual-level web analytics and qualitative feedback. Stanford University and New England Research Institutes Institutional Review Boards approved this study. Results Only 32.7% of clinicians randomized to the intervention ever accessed the website. The number of pages viewed was positively associated with changes from baseline to 12 months in familiarity (P = 0.03) and perceived benefit of practices (P = 0.02). Thus, engagement with the website did predict an improvement in practice familiarity and benefit outcomes despite low rates of use. Conclusions This study demonstrates the importance of methodologically rigorous evaluations of participant engagement with web-based interventions. These approaches provide insight into who accesses these tools, when, how, and with what results, which can be translated into their strategic design, evaluation, and dissemination.

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Addressing Accessibility Issues in Institutional Review Board Policies

Disability Studies Quarterly ◽

10.18061/dsq.v39i1.6062 ◽

2019 ◽

Vol 39 (1) ◽

Author(s):

Meg Milligan ◽

Suzanne Tew-Washburn ◽

Kanessa Miller Doss ◽

Joseph P. Giambrone

Keyword(s):

Equal Opportunity ◽

Keyword Search ◽

Research Participant ◽

The United States ◽

Institutional Review Board ◽

Institutional Review Boards ◽

Educational Practices ◽

Land Grant Universities ◽

Institutional Review ◽

Accessibility Issues

Legislation mandates addressing accessibility issues in educational practices to foster equal access for all students and faculty. Educational practices include research. Institutional Review Boards (IRBs) can contribute to equality in higher education by requiring equal opportunity for persons with different abilities to participate in or conduct research, an area overlooked by IRBs. We contend this is a legal and ethical responsibility under IRBs' protection from harm requirement as well as laws such as the Americans with Disabilities Act (ADA). A keyword search of the 55 original land grant universities in the United States' IRB policies and related documents produced no evidence of accessibility concerns for general research participant pools or researchers. Recommendations to correct this oversight and areas for further study are included.

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