Including everyone in research: The Burton Street Research Group

Abell, Simon; Ashmore, Jackie; Beart, Suzie; Brownley, Peter; Butcher, A. Allen; Clarke, Zara; Combes, Helen; Francis, Errol; Hayes, Stefan; Hemmingham, Ian; Hicks, Kerry; Ibraham, Amina; Kenyon, Elinor; Lee, Dong Hoon; McClimens, Alex; Collins, Michelle; Newton, John A.; Wilson, Dorothy

doi:10.1111/j.1468-3156.2006.00425.x

Cited by 49 publications

(59 citation statements)

References 1 publication

Supporting

Mentioning

Contrasting

Unclassified

Order By: Relevance

“…Para contribuir a la construcción del equipo de investigación, planificar y desarrollar acciones de formación sobre investigación dirigidas a los investigadores con discapacidad puede constituir una estrategia potente. La necesidad de formación en investigación es un tema reconocido tanto por investigadores sin discapacidad (Bigby y Frawley, 2010;Johnson, 2009;Pallisera y Puyalto, 2014;Puyalto et al, 2016;Strnadová et al, 2014;Walmsley, 2004;Walmsley y Johnson, 2003;Ward y Simons, 1998) como por las propias personas con discapacidad que han participado en investigaciones llevadas a cabo de forma inclusiva (Abell et al, 2007;Burke et al, 2003;Butler et al 2012;Flood et al, 2012;White y Morgan, 2012). Como plantean Nind et al (2015) la cuestión de la formación no es neutra, puesto que implica plantear cual es el objetivo de la formación: ¿se trata de facilitar el aprendizaje de competencias relacionadas con la investigación para que los investigadores con discapacidad puedan abordar tareas más complejas a lo largo del proceso?, ¿o bien contribuir a proporcionar a las personas con discapacidad un rol y un estatus socialmente valorado como colaboradores en procesos rigurosos de contribución a la creación de conocimiento?…”

Section: Introductionunclassified

“…Se sugiere también plantear suficientes actividades prácticas para aplicar los conocimientos (Abell et al, 2007;Flood et al, 2012) y utilizar materiales accesibles para los participantes (Flood et al, 2012;Burke et al, 2003;Salmon et al, 2014;Carey et al, 2014). Además, se recomienda incluir en la formación cuestiones éticas relacionadas con la investigación (Abell et al, 2007;Burke et al, 2003) y que los participantes puedan interactuar con grupos de personas con discapacidad que realizan investigaciones colaborativas para compartir experiencias (Flood et al, 2012). Johnson (2009), en el proyecto "No longer researching about us without us", insiste en las posibilidades del role playing y las prácticas de observación.…”

Section: Introductionunclassified

See 1 more Smart Citation

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

View full text Add to dashboard Cite

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.

show abstract

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

View full text Add to dashboard Cite

show abstract

Section: User Participation In Researchmentioning

confidence: 99%

“…However, it still may not be seen as a priority and it can be hard to obtain funding. Also, while there is quite a lot written about user involvement in mental health research (Beresford, 2006; Faulkner & Layzell, 2001;Rose, 2001), there are fewer examples of research involving people with learning disabilities (Abell et al, 2007;Ham et al, 2004;Redmond, 2005).User involvement may also mean different things. There are different levels of involvement in research -from consultation (where researchers may ask service users to comment on parts of the research), collaboration (the service users and researchers work together to make decisions), through to user-controlled or user-led research.…”

mentioning

confidence: 99%

Include me in: user involvement in research and evaluation

Grayson¹,

Tsang²,

Jolly³

et al. 2013

Mental Health and Social Inclusion

View full text Add to dashboard Cite

Purpose: This paper discusses the experiences of a group of ten user and carer researchers from mental health and learning disability services who worked together in a research and evaluation project between 2009 and 2012. The research project aimed to identify changes that took place as over 300 people moved from hostel accommodation into independent tenancies in flats and bungalows. These moves were part of a three year project involving a partnership between a local authority and a housing association.Design / approach: The paper describes the process of involving user and carers in the research process, identifying the challenges and benefits of involving users and carers. The ways in which people were trained and supported to take part and stay involved are outlined, as well as how the group felt they learnt new skills and increased their confidence.Findings: User involvement in research can mean different things with different levels of involvement, from consultation through to user-controlled research. The collaborative study had a range of benefits for the lives of the co-researchers, as well as contributing to the development of a new independent living service. A number of factors contribute to the success of user involvement in research and these are listed.Originality / value: This paper adds the voices of the co-researchers to the literature and provides 'lessons learned' for other researchers in this area. Keywords:User involvement, research and evaluation, learning disability, mental health, independent living, housing, social inclusion. Article Classification: Case Study IntroductionThis paper describes the experiences of a group of ten user and carer researchers from mental health and learning disability services who collaborated in a research and evaluation project. The project aimed to identify changes that took place as over 300 people moved from hostel accommodation into independent tenancies in flats. These moves were part of a three year project involving a partnership between Progress Care Housing Association and Leeds City Council Adult Social Care Department.The plan to evaluate the move from hostel accommodation to people having their own flats/bungalows and tenancies was discussed at a number of meetings of hostel tenants. People were particularly interested to find out if moving out of a hostel improved social inclusion and helped people to feel more involved in the local community. Progress Care Housing Association led a bid for funding from the Big Lottery. This was successful and a research management group was set up including people from Progress Care, Leeds City Council and Leeds Metropolitan University. First of all three staff were recruited to work on the project, a senior researcher, a research officer and a part-time administrator. They were employed by Progress Care but based at the university and supervised by a university researcher involved in the original bid and who had relevant research and practice experience.User and carer involvement in the evaluation was recogni...

show abstract

“…A particular feature of this study was the involvement of coresearchers from both learning disability and mental health services. Although there are numerous examples of research involving survivors and users of mental health services, there are, as yet, fewer examples of the involvement of researchers with a learning disability (Ham et al, 2004;Redmond, 2005;Abell et al, 2007). There is also a recognition, influenced by a feminist perspective, of the importance of critically examining difference within research relationship (Ramazanoglu & Holland, 2002) and the need for reflexivity within a framework of ethical practice (Humphreys, 2008).…”

mentioning

confidence: 99%

Who calls the tune Participation and partnership in research

Karban¹,

Paley²,

Willcock³

2011

Social Work and Social Sciences Review

View full text Add to dashboard Cite

This paper explores issues of partnership and participation in research and evaluation, drawing on the experiences of evaluating a move from hostel accommodation to independent supported living for people with mental health difficulties or learning disabilities. The service change project involved a partnership between a local authority and a housing association with over 300 people moving into their own tenancies in newly-built flats and bungalows. The accompanying evaluation was designed on a model of service user participation and action research and was specifically concerned to explore the impact of the changes on people's actual or perceived social inclusion into local communities. Ten service user and carer researchers, some of whom were directly involved in the move from hostel to independent living, were recruited and worked with 'professional' researchers to examine both the process and the outcomes of the move.The work will be viewed through the insights offered by feminist, transformative and participatory approaches to research. The 'positioning' of the researcher in relation to boundaries and the construction of the 'other' will be considered, emphasising an approach grounded in reflexivity and an acknowledgement of the complex ethical issues involved.A key feature of this study has been the negotiation involved between a complex change project and a participatory evaluation design. Learning points from the work so far will also be considered in terms of their wider application in future evaluations of complex change projects that involve multiple stakeholders. IntroductionThis evaluation based on a model of user involvement and participatory research involved three organisations -a local authority adult social care department, a housing association and a university. An action research component ensured that learning from the evaluation was fed back into practice throughout the life of the study.The study arose from the closure of local authority hostels for people with mental health difficulties or learning disabilities and their replacement by core and cluster accommodation in private tenancies, funded by a private finance initiative. Continuing support to service users is provided by housing support workers employed by the local authority, many of whom previously worked as residential care staff. Close working relationships between the housing association and the adult social care department were maintained to ensure the smooth handover of the new accommodation. The primary aim of the evaluation was to consider the extent to which changes in accommodation and support improved social inclusion in local communities.The original intention to evaluate the service transition involved meetings with interested parties including a local university and it was agreed that an external evaluation would be most effective in providing an independent perspective on the project. A successful bid for Who calls the tune?Page 2 funding from the Big Lottery was led by the housing association and a managemen...

show abstract

Including everyone in research: The Burton Street Research Group

Cited by 49 publications

References 1 publication

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

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

Include me in: user involvement in research and evaluation

Who calls the tune Participation and partnership in research

Contact Info

Product

Resources

About