Common standards series: post-session participant care

Authors: Harry Cerasale and Caitlin Connors

The approach to participant care discussed in this post — including our open-source wellbeing pack — was developed with trusted partners at AndGood (Laura Malan & Fran Cook) and clinical psychotherapist Mary Coyne.

We are deeply grateful for their work and input. Our thanks also to MRS and SRA ethics board colleagues who gave generously of their time and expertise.

Bright Harbour are making many of our ethical research resources open source. Use /share /adapt — help make them better.

What can we all be doing to deliver better end-to-end participant journeys?

Long term, the Bright Harbour crew have big ambitions for making our research and design practice more equal, less extractive, and more open.

Participatory methods and kinder practices only go so far to address status quo power imbalances between decision makers and those living with their decisions — and we all have a part to play in driving change.

Short term, the system is what it is. We can’t afford to wait for the perfect environment to make changes already in our gift to make now. Sometimes it’s best to do things just that little bit better in the space you have today (whistling a quiet revolution song for the future) than do nothing at all.

One thing we can do now is shine some light on the nooks and crannies of research practice that don’t get much attention — but make a big difference to participant journeys. All the ‘backroom’ process stuff that doesn’t pull in revenue or win awards can tend to collect dust — even as methods and outputs are endlessly innovated.

In this post, we’re focusing on how we’re evolving our approach to post-session participant care, and the questions we’re asking ourselves about the responsibility we hold towards participants after sessions end.

First: why does it matter, especially now?

As public sector research and design experts seeking to support public change, we often bring into research some big, messy, deeply human questions — and ask participants to share stories that are real, raw, and personal. Our job is to create a safe, caring, honest space for participants to tell it like it is, so that we can help people in power decide how it should be and what to do next.

Holding this brief relational space with participants is always a privilege, often a pleasure, and something that most researchers I know take very seriously; the questions and conversations are so intimate.

What is it like to fall deeply into debt and lose the house?

What did you need when you first lost your baby?

What helped you realise that you were in a toxic relationship?

Most of the time, research involvement is positive and enjoyable for participants. They often tell us how healing it was just to talk and be listened to without judgement, especially under the reduced social contact of pandemic. It can feel good to get something off your chest and talk about something taboo or sensitive, particularly in the name of positive change.

But most of the time, once sessions ends, that relational space closes, and the wider impact on participants of engaging with us becomes invisible. Whatever bond was formed is dissolved, prioritising professional boundaries and distance. Participants are left to manage whatever emotions the conversation has stirred on their own.

Most (decent) researchers are left with unanswered questions at this point:

What if our conversation made things worse, not better? What if it pulled at the scab, or opened up something buried?

What if I’m the only person they ever share this with? What if it was a kind of cry for help to tell me what they told me — and no one ever follows up?

I can’t solve the problem, but what if I could help? What if this person never finds support within a system I know really well?

How do I honour the connection I’ve made with this person AND maintain boundaries — avoiding the harms of saviourship or research-as-therapy?

‘Standard practice’ offers imperfect answers

The questions above often gnaw at researchers/designers, and many of us carry quiet discomfort about the industry’s ‘answers’. Standard practice is very good maintaining boundaries (important), not so good at passing ‘the gut test’ on whether we’ve held up our end of the relational bargain (also important!).

Usually, the industry-approved answer and accepted practice looks something like this (NB — with the exception of the occasional ‘special’ approach for an audience or topic that feels particularly sensitive or ‘vulnerable’):

• End sessions on a positive note — not an emotional down point — to minimise risk of leaving the participant in a bad way at end of interview.
• Provide signposting to a couple of services that offer professional support.
• Have/activate a participant safeguarding plan if you’re worried the participant is a harm to themselves or others.
• Potentially, conduct follow-up calls to check in after the session.

Over the last decade, and particularly over the last 5 years or so, and then a whole lot more again under pandemic — this standard practice has started feeling increasingly insufficient.

In that time, in large part due to the reality of the UK under austerity, the depth, complexity and sometimes seeming inevitability of participants’ struggles have ramped up.

More and more, for all manner of projects, we find ourselves talking to people who are working really hard AND experiencing acute or chronic stress or crisis AND finding it difficult to find a way out against all efforts AND chronically disadvantaged by structural inequalities AND whose health and mental health are showing the impact of doing all of that for a very long time. And And And.

More people are poorer, many trapped in debt. More people can’t find jobs that meet their basic expenses. More are experiencing support gaps as funding has been cut, then cut again, then cut again.

The mental health burden of all this is enormous — especially post-pandemic, when few of us could say that we have been consistently and entirely well.

Research based on the ONS’s Opinions and Lifestyle Survey has revealed that one in five adults reported having experienced some form of depression between January and March 2021 — more than double pre-pandemic figures. At the same time, in many geographies community mental health services are essentially experienced as nonfunctional, even for those in urgent need.

“Thanks so much for participating in research, here’s a leaflet?”

Revising our post-session care plans

In the early weeks of pandemic, we took the opportunity to re-think what the end of research sessions should look for now, within the space we had, and what we could let go of from the standard practice toolbox as we moved towards something better.

Once we decided we wanted to offer more, it was important to first check our own impulse for care and make sure we didn’t make any obvious errors that could cause harm in their own right.

Providing bad support can be worse than no support at all, and it was also important to us that we didn’t offer anything that would legitimately blur a needed line between ‘researcher’ and ‘participant problem fixer’.

So we called in the professionals — in this case, support from Bright Harbour partner Mary Coyne, a fully accredited Clinical Person-Centred Psychotherapist and Counsellor.

Together, we considered our options, built a plan, and then sought feedback: from the Bright Harbour Collective, from other research leaders we trusted and respected, and from the peer ethics feedback groups at the Market Research Society and Social Research Association.

This included discussion about whether we should and could ethically offer professional counselling or wellbeing support to participants that might need it — regardless of whether the participant need was related to the topic under investigation in the research itself. (the short answer: yes).

Our participant care approach currently includes:

1 — Green flags for researchers to mention that support is available and we’re happy to talk through options during research sessions themselves — if participants express need or distress.

This isn’t exactly disallowed in current standard practice, but researchers often aren’t sure if interrupting the flow to offer in-the-moment signposting will ‘muddy the data’, or muddy the professional boundaries.

We tell people to go for it and prepare them to do so. If we don’t have answers to something that feels urgent they can bring it to the team and we’ll try to signpost to someone who does.

2 —Standard follow-up calls for any sensitive research, or for ‘non-sensitive’ research participants who seemed distressed or carrying heavy loads. The same researcher who conducted the interview rings back within 2–3 days to check in — ensuring multiple contact attempts.

3 — Provision of a detailed participant wellbeing pack for all sensitive research, but often edited to be appropriate even for more general research projects — including:

• reassurance that help is available and that everyone deserves support
• links to a huge range of different support organisations so that participants can pick what resonates — whether that’s support with crisis planning or help with managing personal finances.
• DIY support like breathing exercises that could be used there and then to help alleviate stress or overwhelm
• reminders about how to get in touch with us if they’re feeling unsettled.

The pack is open source and yours to use and evolve.

To be honest, it’s a little long — but for now we’ve erred on the side of information generosity, knowing that stigma around help-seeking is high, and if people don’t see the thing that’s right for them they may not engage at all.

4 — The option of a one-off, free wellbeing support chat with our Clinical Psychotherapist partner for the project. We signpost that it will be offered at point of consent, mention it during interviews if it feels like it might be potentially helpful, signpost for all in the wellbeing pack, and follow up individually with anyone we’re worried about to remind them it’s an option.

This last provision is something we thought long and hard about, and one that we were worried might be perceived as crossing ethical lines. In the end, it felt hard to justify not doing this, and the general consensus was that appropriately managed, it was an appropriate action to take.

Obviously, it wouldn’t be appropriate for us to promise or provide substantive counselling. But even a one-off conversation with a trained professional can help take the edge off a difficult or crisis moment — and provide bridging until other arrangements can be made.

Learn with us, use our stuff, help us make it better

For now, in the space we have, this approach has provided a care ‘baseline’ that as a team, we’re much more comfortable with. Which is not to say it’s perfect.

We still wish we could do more; we still guiltily wonder how people get on after the research session door closes; we are still excited to work on more projects that are more relational and less extractive in the first place.

In the meantime, we’d love to think on this with you and evolve together. Get in touch if you want to talk about how we’ve applied this in practice. Use and improve on the open-source template (directions here). Offer critique.

We’re all ears.