scholarly journals Is It Worth It? Benefits in Research With Adults With Intellectual Disability

2016 ◽  
Vol 54 (6) ◽  
pp. 440-453 ◽  
Author(s):  
Katherine E. McDonald ◽  
Nicole E. Conroy ◽  
Robert S. Olick ◽  
Keyword(s):  
Intellectual Disability ◽  
Service Providers ◽  
Research Policy ◽  
Research Participation ◽  
Policy And Practice ◽  
Societal Benefits ◽  
Institutional Review ◽  
Direct Benefits ◽  
Participation Research ◽  
Interest In Research

Abstract Including adults with intellectual disability in research promotes direct benefits to participants and larger societal benefits. Stakeholders may have different views of what count as benefits and their importance. We compared views on benefits in research with adults with intellectual disability among adults with intellectual disability, family and friends, service providers, researchers, and institutional review board members. We found that adults with intellectual disability value direct and indirect research benefits, and want to participate in research that offers them. Other stakeholders generally see less value in direct benefits and predict more tempered interest in research participation as compared to adults with intellectual disability. To promote respectful research participation, research policy and practice should incorporate the views of adults with intellectual disability.

scholarly journals What's the Harm? Harms in Research With Adults With Intellectual Disability

2017 ◽  
Vol 122 (1) ◽  
pp. 78-92 ◽  
Author(s):  
Katherine E. McDonald ◽  
Nicole E. Conroy ◽  
Robert S. Olick ◽  
The Project ETHICS Expert Panel
Keyword(s):  
Intellectual Disability ◽  
Service Providers ◽  
Scientific Progress ◽  
Research Participation ◽  
Institutional Review Board ◽  
Board Members ◽  
Ethical Research ◽  
Disability Service Providers ◽  
Participation Decision ◽  
Institutional Review

Abstract Scientific advances can improve the lives of adults with intellectual disability, yet concerns that research participation may impose harm impede scientific progress. What counts as harmful can be subjective and perceptions of harm may vary among stakeholders. We studied perspectives on the harmfulness of research events among adults with intellectual disability, family members and friends, disability service providers, researchers, and Institutional Review Board members. We found considerable variance. For example, adults with intellectual disability see exclusion from research as more harmful, but most psychosocial harms as less significant than others. All stakeholders agree that having someone else make the participation decision is harmful. Findings provide insights into the concept of harm and ethical research with adults with intellectual disability.

Feeling Good About Your Smile: Implementation and Evaluation of an Oral Health Intervention for People With Intellectual Disability

Inclusion ◽  
2019 ◽  
Vol 7 (3) ◽  
pp. 169-176
Author(s):  
Noelle K. Kurth ◽  
Jean P. Hall
Keyword(s):  
Program Evaluation ◽  
Intellectual Disability ◽  
Oral Health ◽  
Health Program ◽  
Research Policy ◽  
Future Research ◽  
Dental Hygienists ◽  
Disability And Health ◽  
Policy And Practice ◽  
Hands On

To address the need to improve oral health among people with intellectual disability (ID), the Kansas Disability and Health Program provided workshops to groups of adults with ID as a prevention strategy. Feeling Good About Your Smile, a hands-on experience, was delivered by trained Registered Dental Hygienists to 63 adults with ID accompanied by 24 supporting family or attendants in seven workshops. Program evaluation data indicate participants improved their knowledge about how to care for their teeth and mouths. Implications for future research, policy, and practice are discussed.

scholarly journals Is Safety in the Eye of the Beholder? Safeguards in Research With Adults With Intellectual Disability

2016 ◽  
Vol 11 (5) ◽  
pp. 424-438 ◽  
Author(s):  
Katherine E. McDonald ◽  
Nicole E. Conroy ◽  
Carolyn I. Kim ◽  
Emily J. LoBraico ◽  
Ellis M. Prather ◽  
...  
Keyword(s):  
Decision Making ◽  
Intellectual Disability ◽  
Service Providers ◽  
Human Subjects ◽  
Well Being ◽  
Institutional Review Board ◽  
Human Subjects Research ◽  
Disability Service ◽  
Disability Service Providers ◽  
Institutional Review

Human subjects research has a core commitment to participant well-being. This obligation is accentuated for once exploited populations such as adults with intellectual disability. Yet we know little about the public’s views on appropriate safeguards for this population. We surveyed adults with intellectual disability, family members and friends, disability service providers, researchers, and Institutional Review Board (IRB) members to compare views on safeguards. We found many points of convergence of views, particularly for decision-making and participation. One trend is that adults with intellectual disability perceive greater safety in being engaged directly in recruitment, and recruitment by specific individuals. Researchers and IRB members need to consider community views to facilitate the safe and respectful inclusion of adults with intellectual disability.

Growing Older with an Intellectual Disability

2000 ◽  
Vol 6 (2) ◽  
pp. 57-66
Author(s):  
Lindsay Gething
Keyword(s):  
Quality Of Life ◽  
Intellectual Disability ◽  
Service Provision ◽  
Service Providers ◽  
Family Care ◽  
Well Being ◽  
The United States ◽  
Aged Care ◽  
Policy And Practice

Both the life expectancy and numbers of older people with intellectual disabilities are growing. Until recently, ageing with a disability had not been a major consideration for Australian policy makers and service providers. The situation was similar in countries such as the United States of America and United Kingdom where, unlike aged care, disability policy and practice had not evolved to meet needs. Ageing with long standing disability has now been specified by the Australian government as a priority area. This paper reports results of consultations held with consumers, their organisations, service providers and government in order to explore quality of life and service provision issues for people with long standing disabilities. It reports these issues and uses themes emerging from consultations to structure previously published information specifically related to ageing with an intellectual disability. Seven broad themes are discussed which relate to: life experiences; attitudes, skills and knowledge of consumers; attitudes skills and knowledge of community and service providers, the nature of service provision; the ageing of family care givers; financial security; and ageing in place. It is concluded that disadvantages and barriers experienced throughout life influence well being and quality of life in old age.

Considering Context: An Integrative Concept for Promoting Outcomes in the Intellectual Disability Field

2013 ◽  
Vol 51 (2) ◽  
pp. 132-137 ◽  
Author(s):  
Karrie A. Shogren
Keyword(s):  
Intellectual Disability ◽  
Research Policy ◽  
Rapid Evolution ◽  
Policy And Practice ◽  
Consensus Definition ◽  
Individuals With Disabilities ◽  
Diagnosis And Classification ◽  
Integrative Concept ◽  
Definition Of

Abstract In light of the rapid evolution of research, policy, and practice in the intellectual disability (ID) field resulting from shifts in our conceptualization of disability and in frameworks for the diagnosis and classification of ID, systematic consideration of the multiple, interrelated contextual factors that impact research, policy, and practice are necessary to achieve valued outcomes for individuals with disabilities, their families, and society. The purpose of this article is to introduce a recently developed consensus definition of context and elaborate on application of this definition to research, practice, and policy in the ID field, with a specific focus on how context may be able to serve as an integrative concept to support the attainment of valued outcomes in the disability field for individuals with disabilities, their families, and society.

Differing Understandings of Informed Consent Held by Research Institutions, People with Intellectual Disability, and Guardians

2019 ◽  
pp. 27-38
Author(s):  
Britteny M. Howell ◽  
Karrie A. Shogren
Keyword(s):  
Intellectual Disability ◽  
Informed Consent ◽  
Research Participation ◽  
Research Literature ◽  
Self Determination ◽  
Institutional Review Board ◽  
Research Institutions ◽  
Ethical Research ◽  
Institutional Review ◽  
Participation In Research

Increasing participation of people with intellectual disability (ID) is necessary for inclusive, ethical research that reduces persistent disparities in representation. However, many adults with ID have guardians, who must consent to research involvement. Researchers have found that guardians are less likely to provide consent than the person with ID, often resulting in lower participation. Institutional Review Board (IRB) members also have been found to hold very cautious views regarding research participation compared to the views of people with ID or their guardians. This chapter reviews issues that emerge because of differing views of research participation held by IRB members, guardians, and people with ID that may unnecessarily limit the participation of people with ID in research. The research literature on these barriers is summarized along with the authors’ own experiences with alternative participatory strategies that have the potential to increase both self-determination and participation in research for people with ID.

Gatekeepers of Science: Attitudes Toward the Research Participation of Adults With Intellectual Disability

2008 ◽  
Vol 113 (6) ◽  
pp. 466-478 ◽  
Author(s):  
Katherine E. McDonald ◽  
Christopher B. Keys ◽  
David B. Henry
Keyword(s):  
Decision Making ◽  
Intellectual Disability ◽  
Individual Differences ◽  
Research Participation ◽  
Attitude Scale ◽  
Institutional Review Board ◽  
Science Attitudes ◽  
Disability Rights ◽  
Institutional Review ◽  
Participation In Research

Abstract Researchers and Institutional Review Board (IRB) members' attitudes influence scientific knowledge about individuals with intellectual disability. We recruited 260 intellectual disability researchers and IRB members to develop a measure of attitudes toward the research participation of adults with intellectual disability, the Participation in Research Attitude Scale. Findings suggest three conceptual domains: Opportunity and Choice, Help in Decision Making, and Beneficence. We also examined individual differences in attitudes and the relationships between general and specific attitudes. In general, intellectual disability researchers and those with closer relationships to individuals with disabilities had attitudes consistent with disability-rights principles. Some dimensions of global attitudes toward adults with intellectual disability predicted more specific attitudes toward their research participation. Implications are discussed.

Commentary on “The Ealing Intensive Therapeutic and Short Breaks Service: an update five years on”

2019 ◽  
Vol 24 (2) ◽  
pp. 64-67
Author(s):  
Joann Kiernan
Keyword(s):  
Intellectual Disability ◽  
Young People ◽  
Design Methodology ◽  
Research Policy ◽  
Contemporary Literature ◽  
Policy And Practice ◽  
Children And Young People ◽  
Content Type ◽  
New Ways Of Working ◽  
Client Group

Purpose The purpose of this paper is to consider the needs of children and young people with an intellectual disability and behaviours described as challenging in light of the article “The Ealing Intensive Therapeutic and Short Breaks service: An Update Five Years On”. Design/methodology/approach Contemporary literature associated with the provision of support to children and young people with an intellectual disability and behaviours described as challenging is considered. Some of the recent challenges associated with the provision of effective and timely support in light of current research, policy and practice are highlighted. Findings The Ealing service’s continued success is discussed within the context of new ways of working required to meet the needs of the client group and their families/carers. Originality/value The commentary reinforces the need to evolve service models that can provide specialist, timely and intensive support. The importance of early intervention is highlighted.

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