Written by Andrea Bruun, Research Associate, Kingston University.

It is indeed a compliment when people tell us they really enjoyed taking part in our focus groups. Particularly when the focus group is about a topic as sensitive as death and dying, a topic that you do not normally associate with being enjoyable. Focus group participants have told us that our groups have been “very informative” or “helpful” and that people “learned a lot”. But… we have not told them anything, we were the ones learning and asking them the questions! So, what is this all about now?

A big part of The Victoria & Stuart Project has been to do focus groups with all the people who may be involved in end-of-life care planning with people with learning disabilities. That involved getting people together in groups, asking them questions, and just getting them to talk about the topic for a few hours. Last year, we held focus groups with people with learning disabilities, families, support staff, healthcare professionals, and policy makers. At the moment, we are running final focus groups that are focusing on hearing from people from different cultures, ethnic backgrounds, and religions.

Irene, my boss on the project, told me that a good focus group is one where you do not have to do a lot of talking – it is the participants who should do all the talking. It is about hearing their perspectives. If the focus group can be done in a way where people are just chatting and bouncing ideas of each other, the focus group has been good. If it can be done in a way where the conversation naturally covers all the questions on your list without you doing or saying much, then the focus group is even better. Either way, a focus group should be mainly the participants talking, not the researchers.

So, what is it that participants have found very informative, helpful, and learned a lot about in our focus groups? Because we did actually not tell them anything.

Earlier this year, we presented our focus group findings at a webinar. The audience was really interested in learning more about our “washing line game”, where we used Books Beyond Words pictures to get people with a learning disability to talk about death and dying. Our focus groups with people with a learning disability are a bit different as people are actually playing games and doing fun things such as dancing around and wearing funny hats. The focus groups for support staff did (unfortunately) not involve dancing around to ABBA or wearing a wig, so my question is still: What made them so positive about taking part?

Could it be the nature of the focus group and maybe the topic? Are we giving people a space to actually talk about something different for a couple of hours? And in this case, a safe and dedicated space to talk about something that people always describe as “taboo”, “difficult”, and “sensitive”? As we did not teach people anything but simply asked them questions, maybe they learned a lot from each other by sharing their thoughts and experiences? Is it helpful just to have a chat about death and dying without necessarily being trained in a specific curriculum?

We have heard a lot that our topic is not something that most people want to or do talk about. People with learning disabilities have told us this, but it was not something specific to people with learning disabilities. We also heard families and support staff say the same thing. Support staff in our focus groups said that they would really like a culture change, where they could speak more openly about death and dying. We have heard over and over again that in our society we need to be better at speaking about this. Maybe the focus group provides people with that space?

It is quite interesting that the focus groups have been that helpful for our research participants, when they really should be helpful for us, the researchers. So, what does that mean?

First of all, it shows us how powerful the focus group method can be. It is lovely as a researcher to hear that people who took part in your research liked it – and even better that they learned something. That makes your research more meaningful, where it feels like you are already making a change and helping the world a little bit with your work – which must be the ultimate dream for a researcher.

Secondly, it tells us that if you are managing an organisation (maybe with a limited budget for training), you can get quite a long way with bringing people together for a couple of hours, ask them a few questions, and just get them chatting – coffee and biscuits are probably also very helpful.

And lastly, let’s talk more about death and dying!