Involving users in project applications: Example of “Stories with aphasia”
Drs Madeline Cruice & Lucy Dipper
Division of Language and Communication Science
What was required?
People with aphasia have difficulties communicating as a consequence of stroke or tumour, and rarely have supportive opportunities to share “who they are” with others – rehabilitation tends to focus on functional communication, and stories that are told to others are often the stories of one’s stroke and recovery – not the story about who the person is. Thus, the aim of the “Stories with aphasia” project is for individuals with aphasia to experience telling their story successfully, and Drs Madeline Cruice and Lucy Dipper from the Division of Language and Communication Science have applied to Big Lottery to run this community project.
The project is designed to connect Londoners who have aphasia with volunteers who will act as story-buddies, assisting each person to produce a digital multimedia story. Volunteers will be trained in communication skills by Connect – the communication disability network http://www.ukconnect.org/, enabling them to work effectively with people who have communication problems. The project will also provide training in developing and recording one’s story using local links with the Oral History Society (http://www.ohs.org.uk/) at the British Library, as well as multimedia training in videoing and editing, and creative workshops in photography, drawing and storytelling to explore people’s stories. The project should improve people’s communication skills and mood, help people feel more engaged in their local communities, and also influence public awareness of the condition and people’s capabilities despite having aphasia. As part of the project planning and submission process to the funder, Cruice and Dipper met with people with aphasia to seek their views on what is needed and what people thought about this idea – and a successful consultation event was held on 22nd November at City University London. 19 individuals attended: 14 people with aphasia, 2 family members, and 2 communication support workers from the Stroke Association.
How did it go?
It was clear from the consultation event that there was strong support for the project which is hoped to make a real difference to people’s lives. One attendee commented “Simply doing the project, the process of doing it, helps get the brain into gear – click, click, click – changing own life, sort of therapy in itself”. People with aphasia strongly supported the intended outcome of raising public awareness (both by sharing stories through a dedicated website and by displaying people’s stories in a major public space), and one attendee commented specifically on the problem: “Aphasia is invisible for people don’t understand”.
Involvement of users shaped the project in several important ways, for example, the emphasis on public awareness increased the priority of this outcome, in the final project application; users discussed the skills to be gained through the project, again increasing the priority of this outcome; and several people with aphasia were clear advocates with a strong campaigning nature and have been invited (and accepted) to become advisors who will work with the project team.
What worked well? Any particular challenges?
The School of Health Sciences’ financial support of the consultation (through research sustainability funds) made it possible to have trained communication supporters at the event, who assisted users to share their views and ensured people’s voices were captured. This worked especially well, with supporters embracing all means of communication (writing, video, drawing) to achieve this (see http://storieswithaphasia.moonfruit.com/gallery/4581089066). We asked current PhD students and research assistants with a background in aphasia to be these supporters, and involving them strengthened the relationships amongst aphasia researchers in the Division, as well as bringing their insights to the project.
There were numerous challenges related to people finding their way to the event, some of which we foresaw and some of which we didn’t. We had chosen an accessible building; signposted clearly; sent maps and directions in a format suitable for our users’ communication problems; and we had pairs of communication supporters at the building entrance ready to direct people. However, we should also have alerted City staff on the security desks of other buildings that our event was taking place and that people with communication difficulties may come to them needing help to find the right building.
There were also some challenges relating to the process of seeking views from people who have difficulties communicating and these were solved through careful planning of the structure of the event and the ways in which asked our questions; methods for recording people’s views in a way that reflected both the content and the means by which they expressed it (drawing, gesture, written words, as well as noting down what they said); providing accessible example material (videos, images, oral stories, and artefacts) to stimulate discussion; and scheduling rest breaks. Above all of this, the most important way to make sure that our users were able to express themselves was to give them plenty of time.