scholarly journals Maximising engagement and participation of intellectual disability staff in research: Insights from conducting a UK-wide survey

2020 ◽  
pp. 174462952092414
Author(s):  
Claire Kar Kei Lam ◽  
Jane Bernal ◽  
Janet Finlayson ◽  
Stuart Todd ◽  
Laurence Taggart ◽  
...  

Aim: This article explores ways of maximising engagement of intellectual disability staff as research participants, research advisers and research implementers. Method: The authors describe and reflect on a three-phased strategy in recruiting front-line staff ( n = 690) working for intellectual disability service providers ( n = 25) to participate in a UK-wide anonymous online survey about death, dying and bereavement. Results: Important elements in engaging participants were: involving stakeholders at all stages of the research process, which includes: building relationships with participating organisations; enlisting organisational management support at all levels; an attractive and well laid-out collection tool; a well-structured recruitment strategy; time and flexibility; and a varied and targeted dissemination strategy. However, the recruitment method had limitations, in particular around representativeness, bias and generalisability. Conclusions: Staff in intellectual disability services can be enthusiastic and invaluable research participants. Active engagement between researchers, participating organisations and stakeholder groups is key to ensuring involvement of intellectual disability staff with research.

2006 ◽  
Vol 4 (1) ◽  
Author(s):  
Carla Abreu-Ellis ◽  
Jason Brent Ellis

This paper provides an overview of adaptive technologies currently being used in Ontario Universities. Results of this study may help disability service providers in Ontario in understanding the current challenges of training students with disabilities in using adaptive technologies as well as improving service delivery methods. Participants were recruited through a listserv and asked to answer an online survey. Data were analyzed using descriptive statistics and anecdotal narratives. Results indicated that students with learning disabilities are not familiar with adaptive technologies that would best suit their academic needs and that training in adaptive technology occurred on an individual basis or in small group settings as opposed to large groups. Participants indicated that they use low-cost equivalents and adaptive technologies housed in open laboratories in order to serve students with financial needs. Challenges faced by Assistive technologists included: consistency in assistive technology use by the students they serve, effective training while semester coursework is in progress, and fitting individuals with very unique needs to the available technology. A series of best practices and accomplishments were identified by the participants.


2016 ◽  
Vol 11 (5) ◽  
pp. 424-438 ◽  
Author(s):  
Katherine E. McDonald ◽  
Nicole E. Conroy ◽  
Carolyn I. Kim ◽  
Emily J. LoBraico ◽  
Ellis M. Prather ◽  
...  

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.


Author(s):  
Suzanne Culshaw

Abstract This article presents an innovative, video-based approach to the recruitment of research participants. A YouTube video was created and uploaded as part of a doctoral study exploring what it means to be struggling as a teacher. Following a review of the recruitment literature, which highlights a general lack of attention paid to the challenges of recruitment, the author explores the approach she took in planning the video. The video was the main promotional tool for the study and was communicated via Twitter and email. She also presents online survey findings on the perceived impact and influence of the video; the visual format, informal tone and the ability to see the researcher in person were rated very positively. A reflective analysis of the video transcript follows drawing on the literature as well as the survey findings. She concludes that video-based recruitment can be an inexpensive but powerful tool which allows a human connection with the researcher early on in the research process.


10.28945/4114 ◽  
2018 ◽  
Vol 13 ◽  
pp. 347-359 ◽  
Author(s):  
Mervi Kaukko

Aim/Purpose: The aim of this article is to discuss a PhD student’s experience of working with unaccompanied asylum-seeking minors, amidst a rapidly changing global situation. The focus is on how the research process influenced the novice PhD student, and how the student’s subject position influenced the research. Background: The incentive for this article comes from an examiner’s comment, which argued that the student’s thesis did not clarify her subject position, or allow her voice to be heard. Paulo Freire’s (2005) concept of “pedagogical love” is used in unpacking these dimensions. Methodology: The paper adopts an autoethnographic approach. The data, consisting of 48 pages of field notes written during the doctoral study, are analyzed abductively (Timmermans & Tavory, 2012), in dialogue with theory. Contribution: The paper brings to the fore the ways in which the doctoral research processes may influence students, especially those working closely and intensively with participants in emotionally challenging situations and within a research field in flux. This knowledge is rarely included in doctoral training, but is relevant in today’s world where migration and refugees have become a popular theme. Secondly, the paper contributes to the already well-established body of literature about how doctoral student’s positionality influences the research. Findings: The article utilises the ideas of storytelling (Weir & Clarke, 2018) and communicates findings in the form of three intertwined journeys: that of the author through her PhD process; the journey of her research participants from their countries of origin to Finland; and the journey of the PhD research within the historical turbulence of 2015 in global refugee situation. The findings show that acknowledging and reflecting one’s own emotional stance is required for the wellbeing of the student, as well as for an ethical research process resulting in a trustworthy outcome. The findings also suggest that although the love-rhetoric may sit awkwardly within our current academic perspectives, a focus on emotions does not diminish rigor in research. Instead, it enables ethical relationships and processes that are meaningful for all participants. Recommendations for Practitioners: The paper recommends that practitioners in academia (including doctoral supervisors) encourage doctoral students to “know with [their] entire body, with feelings, with passion and also with reason” (Freire 1997, p. 30), and to reflect on their positionality, as well as map their doctoral journeys in the intersection of others. Recommendation for Researchers: The paper highlights that researchers working with people in challenging situations must continuously question their biases, show interest in the research participants as individuals, and create trust through long involvement in the research field. Impact on Society: By highlighting the complexities encountered in this research project, the paper aims to disrupt the simplistic, often deficit-focused assumptions about people from refugee and asylum-seeking backgrounds. Future Research: The scope of the findings leaves open a discussion on critical moments during the shared journeys: how to enter the research field ethically, and how to exit after creating trust and building relationships?


Author(s):  
Mazna Patka ◽  
Christopher B. Keys ◽  
David B. Henry ◽  
Katherine E. McDonald

Abstract The acceptance and inclusion of persons with intellectual disability can vary across cultures, and understanding attitudes can provide insight into such variation. To our knowledge, no previous study has explored attitudes toward people with intellectual disability among Pakistani community members and disability service providers. We administered the Community Living Attitudes Scale (Henry et al., 1996), a measure of attitudes toward people with intellectual disability developed in the United States, to 262 community members and 190 disability service providers in Pakistan. Confirmatory factor analysis found a 4-factor solution (empowerment, similarity, exclusion, and sheltering) fit the Pakistani sample. More positive attitudes were observed in staff serving people with intellectual disability, females, Christians, Hindus, Sunnis, and people with greater education. We discuss implications for research, theory, and practice.


2018 ◽  
Vol 3 (8) ◽  

The aim of this paper is to review the literature related to intellectual disability information systems in the United States, England and Southern Ireland. Electronic databases were used to collate data using key terms such as intellectual disability, service providers, integrated service delivery, organizational structures and features of intellectual disability information system; exchanged data among service providers. This review of the literature presents features of intellectual disability information systems in studied developed countries. It highlights importance of applying integrated and collaborative approaches in providing services as well as exchanged information among the service providers. The study helps to identify what is needed to improve intellectual disability information systems in orderto promote appropriate and more effective service management.


Author(s):  
Katherine E. McDonald ◽  
Nicole E. Conroy ◽  
Robert S. Olick ◽  
The Project ETHICS Expert Panel

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.


2021 ◽  
Vol 20 ◽  
pp. 160940692110270
Author(s):  
Hanne Marie Høybråten Sigstad ◽  
Veerle Garrels

Using photo elicitation with participants with intellectual disability is a creative approach to inclusive research as the method promotes research participation. Through the photographs that they take, individuals with intellectual disability convey their thoughts and experiences, without the high cognitive demands that are typical of many other data collection methods. People with intellectual disability rely on environmental support to function optimally in everyday life situations. This is also the case for their functioning in research situations. This article provides a novel contribution to photo elicitation methodology, as we share our experiences from using a semi-structured approach, which offers support and guidance to research participants with intellectual disability in the empirical phase of the research process. We discuss the benefits and challenges such a new approach could introduce. The article concludes that provision of adequate support is a prerequisite for successful research participation for individuals with intellectual disability, and our semi-structured approach offers a suggestion on how to deliver this support.


Sign in / Sign up

Export Citation Format

Share Document