Focus groups with people with learning disabilities

Kaehne, Axel; O’Connell, Clare

doi:10.1177/1744629510381939

Cited by 59 publications

(56 citation statements)

References 22 publications

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“…Several scholars in the area of I/DD and EOL have advocated for the use of qualitative methodology in order to conduct research with people with I/DD, whose perspectives often are not represented (Andre-Barron, Strydom, & Hassiotis, 2008; Kaehne & O’Connell, 2010; Llewellyn & Northway, 2008; Tuffrey-Wijne, 2003). This informed, inductive approach is an appropriate first-step methodology to investigate a phenomenon with little empirical documentation (Patton, 1990).…”

Section: Focus Group Methodologymentioning

confidence: 99%

“…This informed, inductive approach is an appropriate first-step methodology to investigate a phenomenon with little empirical documentation (Patton, 1990). Focus groups were used for this research because this methodology has been successfully utilized in both end-of-life research (Aspinal, Hughes, Dunckley, & Addington-Hall, 2006) and in research with people with I/DD (Andre-Barron, et al, 2008; Kaehne & O’Connell, 2010) and may be preferable to surveys for individuals with literacy issues (Boyden, Esscopri, Ogi, Brennan & Kalsy-Lillico, 2009). This approach also facilitates group synergy which allows investigators to gather a comprehensive range of experiences and can yield more information than individual interviews alone (Krueger & Casey, 2000).…”

Section: Focus Group Methodologymentioning

confidence: 99%

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Implementation challenges in end-of-life research with adults with intellectual and developmental disabilities

Savage¹,

Moro

Boyden

et al. 2015

Applied Nursing Research

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Although the 4 million+ people in the U.S. with an intellectual or developmental disability (I/DD) experience close to the same life expectancy as those in the general population, end-of-life research including these individuals is lacking and can be difficult to implement. As will be described in this paper, it is possible to overcome barriers to successfully include people with I/DD in end-of-life research. In this paper, the implementation challenges, feasibility, and implications for successful end-of-life research with individuals with I/DD using focus groups are described. Individuals with I/DD were able to discuss their experiences and views about end-of-life care. However, while people with I/DD made valuable contributions to the focus groups, there were several modifications needed in order to execute this study. In order to gain a complete picture of end-of-life care for people with I/DD, it is imperative to include them in research to the best of their ability. By anticipating issues related to recruitment, the consent process, setting, and support needs of participants, focus groups can be successfully implemented.

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Section: Focus Group Methodologymentioning

confidence: 99%

Section: Focus Group Methodologymentioning

confidence: 99%

Implementation challenges in end-of-life research with adults with intellectual and developmental disabilities

Savage¹,

Moro

Boyden

et al. 2015

Applied Nursing Research

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“…• Utilización del método del grupo focal en las reuniones, valorando entre sus fortalezas el hecho de que configura un entorno seguro para la discusión que ayuda a los participantes a ganar confianza, a colaborar y a recibir apoyo del resto del grupo, y a contrastar opiniones y experiencias (Cambridge y McCarthy, 2001;Barr et al, 2003;Kaehne y O'Connell, 2010). Además, permite que las personas con pocas habilidades de lectoescritura puedan participar activamente en procesos de investigación.…”

Section: Introductionunclassified

Apoyando la participación real de las personas con discapacidad intelectual: una experiencia de investigación inclusiva sobre vida independiente

Díaz¹,

Noell²,

Rovira³

et al. 2017

Redis

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Para citar: Pallisera, M. et al. (2017): "Apoyando la participación real de las personas con discapacidad intelectual: una experiencia de investigación inclusiva sobre vida independiente". Revista Española de Discapacidad, 5 (I): 7-24. Doi ResumenEn nuestro contexto se han desarrollado escasas experiencias de investigación realizadas conjuntamente entre investigadores académicos e investigadores con discapacidad intelectual. Este artículo tiene como finalidad aportar una experiencia de investigación cualitativa sobre vida independiente y discapacidad, desarrollada por las autoras (investigadoras académicas) en colaboración con un Consejo Asesor integrado por personas con discapacidad intelectual. Se pretende, además de presentar el desarrollo y resultados de la investigación, explicar cómo se ha construido el proceso de colaboración entre los asesores y las investigadoras de la universidad a lo largo de las distintas fases del estudio. También se van a concretar las estrategias de apoyo que se han ofrecido a los asesores para plantear, finalmente, las reflexiones sobre los principales retos que conlleva avanzar en los procesos de investigación inclusiva. Con ello se pretende contribuir al avance de las investigaciones inclusivas en las que las personas con discapacidad tengan un protagonismo real en el estudio de los problemas que las afectan. Palabras claveInvestigación inclusiva, discapacidad intelectual, vida independiente, investigación colaborativa. AbstractIn our context, few studies have been developed jointly between academic researchers and researchers with intellectual disabilities. The aim of this article is to describe a qualitative research experience about independent living and intellectual disabilities conducted by the authors (academic researchers), in collaboration with an Advisory Committee composed of people with intellectual disabilities. Aside from exposing the development and the results of the investigation, this article aims at narrating the collaboration process between the advisors and the university researchers along the different research phases. The support strategies offered to the advisors are also detailed, as well as some considerations about the main challenges faced along inclusive researches. This paper intends to contribute to the advancement of inclusive research, capable of ensuring that people with disabilities have a real role in the study of the problems that affect them.

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“…). Presently, the majority of research conducted with individuals with intellectual disabilities as participants is qualitative in nature and includes face‐to‐face interviews and focus groups (Kaehne & O'Connell ; McDonald et al . ; Savage et al .…”

Section: Introductionmentioning

confidence: 99%

Intellectual Disabilities and Decision Making at End of Life: A Literature Review

Kirkendall

Linton

Farris³

2016

Research Intellect Disabil

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Focus groups with people with learning disabilities

Cited by 59 publications

References 22 publications

Implementation challenges in end-of-life research with adults with intellectual and developmental disabilities

Implementation challenges in end-of-life research with adults with intellectual and developmental disabilities

Apoyando la participación real de las personas con discapacidad intelectual: una experiencia de investigación inclusiva sobre vida independiente

Intellectual Disabilities and Decision Making at End of Life: A Literature Review

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