Research project
Title: Friendship and Aphasia
Project timescale: From 01 October, 2009 to 31 March, 2013
(Added to website on: 01 January, 2013 - Date last updated: 14 January, 2013)
Source of funding:
Student bursary Brunel University
Aims: To work with a team of people with aphasia (communication impairment after stroke) to: explore how people with aphasia define and understand friendship in the context of aphasia; explore strategies for sustaining and developing friendship in the context of aphasia; explore the meanings of doing participatory action research with people who live with aphasia.
Research designs used:
Other: Participatory Action Research
Methods used to collect data:
Interviews
Other (please specify): Participatory Action Research groups
Research project description: The Friendship and Aphasia project explored definitions and experiences of friendship for working-aged younger people who have aphasia. Aphasia is a communication disability affecting the ability to use and understand spoken and written language. It also has profound impacts on the ability to work, to take part in leisure and life and to develop and sustain relationships. The project team included eight people who have aphasia and a PhD research student. We used a participatory action research methodology, involving cycles of reflection, planning and action. Involvement of advisors / co-researchers with aphasia from the outset and on a long-term basis was critical to the success of the project.
Stages at which the public were involved:
Designing the research instruments
(eg questionnaires, patient information sheets)
Assisting in finding and designing appropriate
ways of approaching participants
Undertaking the research
Training other people to carry out the research
Analysing the research
Final Research Report
Writing about the research eg
publications, newsletters
Prioritising topic areas
Contributing / commenting on final report
Disseminating research
Planning the research
Writing or co-writing final report
Implementing action
Managing the research
Speaking about the research eg
workshops, presentations
Other:
Description of public involvement in research stages: Early - selecting research topic and questions. Design - advising on methods for exploratory stage, for example how to develop accessible interviews; commenting on information and consent materials. Advocacy - for involvement of people with severe aphasia who are often excluded from stroke research. Creativity - leading an innovation stage which involved development of group storytelling events. Analysis - supporting researcher to review and interpret interview findings. Dissemination - supporting researcher to co-write and co-present to different audiences.
Training and support provided for either members of the public or researchers involved in the project: Informal support from the researcher from meeting one.
Examples of ways the public have made a difference to the research project: We believe that the involvement of co-researchers with aphasia has led to: a different research question; a different methodological approach; a different tone to findings; a more action orientated agenda for the research; a more creative approach to making sense offriendship and sharing findings. See INVOLVE newsletter article for details (www.invo.org.uk/posttypenewsletter/autumn-2012/).
Evaluating the impact of public involvement in the research: One of the research questions addressed the meaning of doing Participatory Action Research with individuals with acquired language impairment. This will be fully discussed in the PhD thesis and is a topic of the INVOLVE newsletter article.
Details of publications or reports resulting from the research: INVOLVE Newsletter - Autumn 2012 www.invo.org.uk/posttypenewsletter/autumn-2012/ Project website - http://friendshipandaphasia.weebly.com/
Links to Reports:
INVOLVE Newsletter - Autumn 2012
Was/is your project user controlled: Yes
The research group (eight individuals with aphasia and the researcher who is disabled but does not have aphasia) took decisions about the focus of the research, the design, methods, analysis and dissemination.
For further information on the project, please contact:
Ms Carole Pound
Lead researcher
Brunel University
School of Health Science and Social Care
Mary Seacole Building
Kingston Lane
Uxbridge
Middlesex
UB8 3PH
United Kingdom
carole.pound@btinternet.com
Website: friendshipandaphasia.weebly.com/
Website: friendshipandaphasia.weebly.com/
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