Cultural Probes in the Wild

By Freyja Harris and Corrienne McCulloch

This is the third post in our Critical Care Futures series. If you need to catch up, head back to the first post where we give a little context on this project or the second post where we talk about what the process of co-designing the cultural probes looked like.

This blog goes into detail about what the recruitment process looked like, how we managed the cultural probes whilst they were with participants and what we learned from the process. You can also find a link to download a blank version of the cultural probes we designed.

Recruiting Participants

At the beginning of any recruitment process, we create a recruitment framework to identify the groups of people we would ideally have involved in the research to ensure that the different perspectives we’re trying to reach are balanced. For this project, our recruitment framework was relatively simple — we wanted to recruit 20 participants equally across 4 groups:

• former patients or family members
• research ethics committee (REC) members
• clinicians
• researchers

It takes a lot of energy to recruit participants and it is important to establish clear communication and build a trustworthy relationship from the start. Annemarie Docherty and Corrienne McCulloch were responsible for identifying and approaching potential participants. Fortunately, they had well-established professional links with the clinical and research communities in critical care, making it easy to identify and approach potential participants from these groups. Consideration was given to recruiting a wide range of participants to bring different perspectives, for example, different professional roles in critical care and research.

Corrienne had previously spent a number of years coordinating and working with a critical care Patient and Public Involvement (PPI) group as well as involvement in the ICUSteps Edinburgh support group to connect us to past patients and family members. In the early stages of the project design and pre-grant award, a call went out to the PPI group to help review the project. Those who were interested in the project at that time were invited to participate as well as extending the invite to the wider PPI group.

The project was also advertised via the Chair of ICUSteps Edinburgh to enhance recruitment further in this group. This was successful and resulted in 2 participants with a recent stay in critical care volunteering their involvement. However, another participant who volunteered via this route withdrew during the cultural probe study due to the challenging nature of going back over their experience in critical care.

The most challenging group to engage were members of ethics committees, as, other than one of the co-design collaborators being a member of a research ethics committee (REC) there were no direct contacts or previous experience in the team to support recruitment here.

The opportunity was shared with a REC which reviews critical care research involving adults with incapacity and found one participant, and another was found through word of mouth. However, whilst recruiting for the other groups in the project, it became apparent that participants came with multiple identities. For example, research-active clinicians with personal experience of having a family member in critical care. Others had recent and current experiences of being a REC member alongside their other perspective(s) and this helped us to meet our target recruitment numbers. On reflection, if there had been an opportunity to attend and present the project at a REC this might have been more successful and personal than a forwarded email. In the other groups, established relationships and conversations about the project made recruitment much easier.

Corrienne followed up with all those approached to send through information on the research project and to share a sign-up link. There is always further follow-up with people to encourage participation despite an interest to take part having been informally expressed. The baton was then passed to Andthen for one member of the team to follow up with everyone. This worked well and ensured that all participants were receiving the same information and there was a standardised process for onboarding people into the research.

Managing the Cultural Probes

The onboarding process involved; collecting the postal addresses of participants, sharing further details about what the probes would contain in order to make sure the participants felt comfortable with the ask, making sure everyone understood the instructions and confirming whether there were any specific accessibility barriers involved in taking part.

Accessibility was a consideration from the beginning of the design process for the cultural probes. This involved anticipating the barriers that people might face — such as technical ability — as well as testing the tasks with the co-design group to gauge how easy the tasks were to understand and complete, or if any other unanticipated challenges came up. This highlighted things that needed to be changed such as making the tasks accessible to people with English as a second language and the varied preferences of a group that ranged from those who enjoyed completing the open-ended tasks and those who found them challenging to respond to.

Once the design process is complete, it is also important to be aware of any specific accommodations that can be made for individuals as well. Working with participants who have experience of being in ICU may have cognitive, physical or mental health impairments occurring as a result of their critical illness (known as Post Intensive Care Syndrome). This means that a flexible approach needs to be taken to how people respond to the research activities.

Once the probes were posted out we maintained contact with all participants to track the progress of each cultural probe. This included; ensuring packages had been received, being available to answer clarifying questions about the activities, helping people build confidence in their ability to complete creative tasks and confirming the receipt of the packages once they had been returned.

Some of the difficulties we came across when the cultural probes were out in the wild included; materials being triggering for participants, post getting lost in both directions, navigating delays with ongoing postal strikes and accessibility barriers around using pen and paper as the medium to complete the tasks.

Learnings from the process

• Having good relationships with potential participant groups is really useful when trying to bring people into a research project, particularly when it is a new process that is being tested.
• It takes much more energy and the success rate is much lower when recruiting a new or unfamiliar group of people. It is important to try to create personal connections here when possible.
• People are generally familiar with receiving things in the post and therefore there is a lower barrier to entry than with digital alternatives, particularly when trying to gain creative responses from people.
• The process of posting cultural probes is less direct and much slower than online correspondence. There are risks of the post getting lost which can be very demoralising for participants, particularly if they have put a lot of effort into their responses. It is also important to ensure there are time contingencies for when things go awry.
• Putting energy into designing and making the cultural probes visually interesting makes it more like receiving a gift than a burden to complete. Therefore, participants are more likely to put more energy and consideration into their responses.
• There are always accessibility challenges with cultural probes, no matter what medium they are offered in, due to the need for them to be standardised for a group but also individually accessible. In this case, completing activities on pen and paper became a barrier for some participants and in these cases the debrief discussions became really important to ensure that their opinion was equally heard.
• The cultural probes by nature will be completed by participants without researchers or facilitators present and therefore you’re likely to receive different responses to what you’d receive if they were being steered through activities.
• The ask and set-up of the tasks need to be really clear as nobody will be there to facilitate the activities. Particularly, when asking adults to complete creative tasks there needs to be an assurance that there is no pressure when it comes to artistic ability.
• Exploring research within critical care touches on highly sensitive experiences, especially for those with experience being a patient in critical care or being close to someone in critical care. We had to reflect this in the design of the probes. Because we would not physically be there in the room to facilitate their completion, we needed to ensure the probes weren’t so open-ended that participants would start exploring unsafe or triggering topics. While in another project, the cultural probes produced may have been more open-ended, here we went for quite contained probes with quite well-defined boundaries for exploration.

Sharing tools from our process

Some of the tools we developed to support this co-design process are available here to download for free, under a creative commons licence.

These include:

• Instructions
• A Warm-Up Activity
• The ICU Guestbook: Understanding what care feels like in the ICU to understand where research can add to the care people receive
• A Ballot Paper: Exploring different points of view on research in critical care
• Photo Study Instructions: Identifying items that you would like to have with you whilst in Critical Care
• Data Island: Exploring how patient data should be kept
• A Postcard: Understanding points of view on consent in research

About ‘Exploring Futures for Critical Care Research’

‘Exploring Futures for Critical Care Research’ is funded by a Scottish Public Engagement Network (ScotPEN) Wellcome Engagement Award. The project is a collaboration between clinicians, social scientists and designers, working with ICU survivors and research governance staff to co-design cultural probes for public engagement. In addition to catalysing dialogue, the project aims to produce a set of future principles for person-centred approaches to data use and consent in ICU, as well as a public-facing installation about the future of ICU research.