Importantly, in Living Life to the Fullest participation and leadership has been shaped and adapted to fit around the needs and wants of Co-Researchers. The Co-Researcher Collective cannot have benefitted the research in the ways it has without access to virtual spaces and methods. As such, much of our communication with the Co-Researcher Collective has taken place online — we have connected daily through a closed Facebook group, Skype, FaceTime, email and WhatsApp.
Co-researchers have used multiple social media platforms for data collection. For example, co-writing our interview schedules initially took place on the page of our private Facebook group. Co-Researchers offered questions through ‘commenting’ on posts about the schedules. They also recruited participants for interview (young disabled people and parents) through Facebook and Twitter; and carried out online semi-structured qualitative interviews via new social technologies (primarily Facebook and Skype). We also used Skype to begin our collaborative analysis – group Skype workshops facilitates co-researchers coming together to discuss emergent themes in the data.
With regards to public engagement, in Living Life to the Fullest we have used social media across the project to communicate our processes, methods and findings:
We have a project Twitter account, which regularly updates followers as to the progress of the project, as well as providing the key means to share updates from our project blog. We have used Twitter in a range of ways:
We created our own hashtag to engage with difference communities on Twitter to help us shape our bid for funding.
We created a hashtag calendar – a list of dates when charities and organisations have their awareness weeks on social media. For example, each year the Social Care Institute for Excellence runs #CoProWeek to promote the benefits of co-production and encourage people to share good practice.
We regularly responded to to ad hoc hashtags. For example, these can pop up and start to trend, so using these is a useful way to reach new audiences and share information.
We regularly responded to conference hashtags, whether we attended the conference or not. Conference hashtags bring together a community of researchers, academics, and professionals, so is a helpful way to engage with others.
We regularly tagged people we knew would be interested in the project, and often they re-tweeted.
We used Twitter to build up a community of followers.
Research team members re-tweeted from their individual accounts and tagged project into their tweets.
We used Twitter to responding to press and news articles.
We used the platform to connect with our Community Research and Expert Impact Partners, for example, Purple Patch Arts and Together for Short Lives.
We regularly used Twitter to make project announcements.
We tweeted out project outputs including our open access journal articles.
We often tagged our institutional university accounts – department, faculty, and university – to promote our work within and beyond our university community.
We promoted co-researchers’ existing work that linked to the project.
We tweeted our funders, the ESRC, to recognise their funding.
We used Twitter to recruit our participants – both disabled young people with LL/LTIs and their parents and family members.
We used Twitter Analytics to demonstrate reach and engagement.
We used Twitter to share film and podcasts.
You can add descriptions to the images you share on Twitter to make your content more accessible for people with visual impairments and others who use screen readers. Check out how to do this here.
We have a lively project blog, to which our young co-researchers regularly contribute. For example, this might be either their experiences of being young people living with life limiting and/or life threatening impairments; or their thoughts on being a co-researcher on an academic project, or other interests that are relevant to the project. We used our project blog in a range of ways:
To document research activity.
To share the work of the co researchers.
To promote project outputs – journal articles, films, and podcasts.
To record conference presentations and workshops we hosted; this was really useful for filling in Research Fish, an online system that requires researchers to document the impact of their research.
To recruit parents interviewees.
We used our WordPress Analytics to demonstrate reach and engagement.
We regularly invited guest bloggers with followings to pull people in and gain followers.
Our closed (private) Facebook group offered co-researchers a space to come together to chat about the project online. Closed groups are more private to those who are members. Like public groups, everyone can search for and view the name, description and member list of a closed group. But users can’t view the group’s content until they become a member. To join a closed group you have to be approved by an administrator or invited by a current member. We have used Facebook in a range of ways:
We used posts to our closed group page to seek co-researchers’ ideas for interview questions and to build interview schedules.
Our young co-researchers used Facebook Messenger for semi-structured virtual interviews.
We recruited participants via Facebook.
We posted information about the project to other groups’ pages, including to the pages of our Community Research Partners.
Instagram is a photo and video-sharing social networking service owned by Facebook. We used Instagram as a key social media space for exhibiting project artwork. Check out our online gallery here (LINK TO ADD).
Throughout the project, we used a free version of some online software called Powtoon to make and share short animated films about the project. Powtoon is very easy to use and enables you to create professional looking films quickly and easily. Your completed film can then be uploaded to a platform of your choice; we chose YouTube.
Here is an example of a Powtoons film we made very early on the project.
One of our most widely used and disseminated short films was made on iMovie. We made this short film remotely, and for free, sending out a short brief to co-researchers with questions to answer about how they felt about being included in the research. Co-researchers then filmed their segments on their mobile phones and sent them to us – we share the end product below!
Podcasting is a great way to share research findings and to make space for a variety of voices from your project. Our co-researcher Lucy Watts MBE recorded a brilliant podcast for the project using the platform Audioboom. All the speakers were in their own homes, making it a really accessible process, and we had a conversation about our methods in the project, following Lucy’s brief podcast outline (a list of questions she wanted to ask, along with a scripted introduction and ending).
Listen to Co-Producing Research With Young Disabled People - Episode 2, Lucy's Light here
While we didn’t create our own YouTube channel for the project, we did use it as a free and accessible space to host our short films. YouTube links are easy to tweet, post and share widely.
Tip: To make your films accessible, always try to audio-narrate the content, and add subtitles to ensure it can be accessed in different ways. Podcasts ideally should have a transcript too, so people can read them if needed.