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about 'How to break bad news to people with learning disabilities?' • This article tells the story of how we did focus groups together. The researchers.
British Journal of

Learning Disabilities The Official Journal of the British Institute of Learning Disabilities

ORIGINAL ARTICLE

Doing it together (DM Special Issue) Butler Gary, Cresswell Amanda, Giatras Nikoletta and Tuffrey-Wijne Irene, Division of Population Health Sciences and Education, St George’s University of London, Cranmer Terrace, London SW17 0RE, UK (E-mail: [email protected])

Accessible summary

• We are a team of four researchers, two of whom have learning disabilities. • We did two studies using focus groups with people with learning disabilities. One study was about ‘What is it like for people with learning disabilities to have someone in their family or a friend with cancer?’ The other study was about ‘How to break bad news to people with learning disabilities?’ • This article tells the story of how we did focus groups together. The researchers with learning disabilities helped to plan, to run the groups and to look at the results afterwards. • We did different things in the focus groups. We talked together and also used storytelling, role-play and voting. • Researchers with learning disabilities can really help the group to open up and talk about difficult subjects.

Summary

This paper presents two studies using focus groups with people with learning disabilities. One study was about ‘What is it like for people with learning disabilities who have a family or friend with cancer?’ and other study was about ‘How to break bad news to people with learning disabilities?’ Two of the researchers had learning disabilities themselves. This article reports how we worked together as a team. The focus groups involved various methods for data collection such as storytelling, role-playing and voting. Researchers with learning disabilities enable participants with learning disabilities to discuss difficult subjects. Keywords Cancer, focus groups, learning (intellectual) disabilities, palliative and terminal care, physical illness, research

Introduction Who are we? We are a team of four researchers working at St George’s University of London. Gary and Amanda have learning disabilities. They have not had any formal training in doing research, but Gary has been working at the university for 10 years and has quite much experience helping with research. Amanda is new to the job.

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Amanda had cancer 10 years ago and has recovered. Because of this experience, she took part in some research Irene did before, and afterwards, Irene asked her to come and work with the team. Irene and Niki have had much training in doing research, with nicesounding qualifications to match. Irene has worked at the University for 10 years and has much experience doing research with people with learning disabilities. Niki was new to the job and sometimes surprised by how we could all work together!

doi:10.1111/j.1468-3156.2012.00744.x

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We have written a number of articles in the past, including articles about how we did research together (Tuffrey-Wijne and Butler 2010); using Nominal Group Technique in research with people with learning disabilities (Tuffrey-Wijne et al. 2007); a study of the experiences of people with learning disabilities who have cancer (Tuffrey-Wijne et al. 2010b); and personal experiences of having cancer (Cresswell & Tuffrey-Wijne 2008). We all get paid for our work. Amanda and Gary get paid by the hour, because the number of hours that they are needed is very unpredictable. Gary had a parttime contract before, but this did not work out, because sometimes there was very little to do, and at other times, he needed to come in on extra days. He prefers to come in just for the times when he is needed. The salary is important, because it shows that the work we do is valuable, both to ourselves and to other people. However, it can cause problems with benefits. One of us receives benefits that are not affected by working hours, but another has lost benefits because of the salary. It caused particular problems when the salary for several months was paid in arrears. Receiving this lump sum led to having to attend a ‘compliance interview’ at the benefit office, benefits being reduced for those months and a caution being issued. The benefits office gave no clear advice and made no allowances for having learning disabilities; the whole experience was intimidating and scary. Fortunately, there was a support worker present who could help explain things to the benefits office, but even this support worker found it difficult to understand the rules about how different types of benefits are affected by working hours. At present, the income support payments for one of us are reduced if earnings go above a very minimal monthly level – which does happen. The researchers with learning disabilities at our University feel that it is very important to get paid but wish the benefits system would be less confusing and intimidating. It does not seem right that working more than a couple of hours a week has no financial reward after benefits are deducted; this issue is part of a current national debate (Parliament UK 2011).

What is this article about? We want to tell the story of how we did two research projects using focus groups with people with learning disabilities. They were the following: 1. ‘How to break bad news to people with learning disabilities’ (Tuffrey-Wijne 2012). 2. ‘What is it like for people with learning disabilities to have someone in their family or a friend with cancer’ (Tuffrey-Wijne et al. 2012).

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It was the first time Gary and Amanda were involved in actually running focus groups. We learned much about running focus groups together, and we think it will be useful for others to hear about this. We wrote this article by spending time during three team meetings, remembering our work and talking about it. Irene wrote down what everyone said and turned it into an article. We read it together before agreeing the final version. Right from the start, we knew we wanted to explain our study in an easy way, so people with learning disabilities can understand it. That included not only what we found but also what we did and why. So all along, every time Irene and Niki used difficult words (like ‘research question’, ‘data analysis’ and ‘protection/inclusion’), they explained them and asked Amanda and Gary to say it in an easier way. Interestingly, it was only when we managed to say things in an easy way that we all fully understood it – and that includes Irene and Niki!

How we did the research Getting the research started The research started because of other research Irene and Gary did before, about people with learning disabilities, cancer and dying. That study found that nobody knew how to tell people with learning disabilities bad news about cancer and dying (Tuffrey-Wijne et al. 2010a). We also found that nobody had thought much about the needs of the patients’ friends and family members with learning disabilities (Tuffrey-Wijne 2010). Irene managed to get funding to do more studies. It can be quite hard to get research funding, but funders probably realise how important it is to have people with learning disabilities involved in studies right from the start, because it means that the studies really matter to them. Irene set up a Research Advisory Group that had lots of different people on them: family carers, professionals working with people with learning disabilities, a doctor and nurse working with patients with cancer, people who knew much about research. Apart from Gary and Amanda, there was one more person with learning disabilities in the group, which helped the group to listen to us and remember to keep out the jargon. The minutes and agenda were written in an easy way with pictures, and some group members said they wished all the meetings they went to had minutes like this! The four of us met as a team many times. We had meetings to plan the groups and to practice. We met after each focus group to talk about how it had gone and how it made us feel. This was important, because sometimes the things people said in the groups

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reminded us of sad things in our own lives. We many times when we finished the focus groups, to at what people had said, to make sense of it and to ways of presenting it to others (including writing article).

met look find this

How did we get focus groups together? There were about six ‘participants’ with learning disabilities (i.e. people taking part in the study) in each group, which was a good number. For the two studies, there were six groups altogether. Each group met four times for an hour, usually once a week. Irene also interviewed some participants on their own, because some people could not be in a group but still wanted to take part in the study. For the ‘breaking bad news’ study, Irene and Niki also ran focus groups with people without learning disabilities (such as family carers, doctors, nurses and professionals working in learning disability services); Gary and Amanda were not part of those groups. Getting groups together was much more difficult than we thought. We wanted to have some groups of participants that already knew each other and some that did not. We were interested to see which would work best. In the end, there were only two groups of participants who did not know each other. One of them took a whole year to negotiate and set up, with the help of a community learning disability nurse. This was because she worked in the National Health Services (NHS), and studies with participants that are recruited within the NHS need to get ethical approval as well as Research and Development approval from the local NHS Trust. This can be a long process. The other focus groups were set up through independent organisations, such as learning disability charities and independent day centres. This was easier to arrange because they already had a regular meeting place that we could go to which was part of their routine, but it does mean that participants come from groups that already know each other. Irene tried to get together a group of people with learning disabilities who had heard about the study through word of mouth or through Internet forums. There were enough people interested to take part, but it proved too difficult to set up a group because of difficulties with transport and support. Most participants would need someone to help them get to the groups, and organising this was too difficult. One mother said: ‘She lives with one other person and has a support provider, but I have to say they’re useless. They are not good at getting her to her activities on time. She’s had to give up on so many activities. So I wouldn’t want to sign her up to something that we then can’t fulfil. It’s real shame. I think she has loads to offer.’

This person really wanted to take part in the study, so Irene interviewed her on her own at her mother’s house. Other researchers have also found that the practicalities of supporting people with learning disabilities to take part in research can be very difficult. For example, Cambridge & McCarthy (2001), who did focus groups with people with learning disabilities, said that on average 20% of participants did not turn up because there were ‘transport difficulties, unavailability of helpers, and work or other planned activities received a priority’ (p. 479). This was a shame, because we found that the groups of participants that did not know each other were better. In existing groups, it was clear that roles and relationships had already been formed, and this had an effect on the group. When we thought about this, Gary said, ‘It’s better if they don’t know each other because you get an honest opinion. If you know each other, sometimes you just agree with each other.’ Amanda said: ‘If they do know each other, they don’t always open up.’ Another problem with finding participants was that usually, someone like a service manager, group leader, social worker or nurse needs to agree to help the researchers pass on information about the study. This is called ‘gate keeping’. Our studies were about sensitive topics, and some gate keepers do not think that they are suitable for their clients. This problem of gate keepers blocking access to participants with learning disabilities has been found in previous studies about cancer (Forbat & McCann 2010; Tuffrey-Wijne et al. 2006). In our research, there were several examples of professionals or manager who thought the research was important but did not want to ask their clients to take part. They worried that it would be too upsetting. For the study where we needed to find people with learning disabilities who had an experience of cancer within their family or close circle of friends, several service managers said that they simply did not know which of their clients had this experience, and they did not want to ask. It was interesting that in the one group where the manager simply invited all 20 clients to the research team’s information session, over half of them really wanted to take part and started talking about their cancer experiences at once! The manager was amazed – she had thought that maybe five or six people had a close experience of cancer.

Getting the focus groups started The things we were going to talk about in the groups were not easy, so it was important that the participants knew what they were letting themselves in for. We made a DVD where all four of us explained the study and the kind of questions we would be asking the groups. We also made an easy-read information sheet (see Figure 1). Irene asked a professional to give the information sheets

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Why do we want to find out?

Lots of people get cancer. Many cancer patients live at home with their family or

Information about the study

friends. We know it is often difficult for family and friends. They need a lot of help.

Version 1, 22/04/09

We don’t know what it is like for family or friends with learning disabilities. What help do they need? We need to find out. What happens in the study?

There will be a group of people with learning disabilities.

Hello, our names are Irene, Gary, Amanda and Niki.

We will meet with the group. We will ask questions. We will listen to your stories.

We are doing a study.

It doesn’t matter if you don’t know any

A study is a way of finding things out.

answers. You can still listen to what other people say.

These things will help us think about the questions: We will look at some pictures about cancer and about how people feel.

Do you want to be in the study?

We will ask the people in the group to tell

This information sheet tells you about the

us their stories of what happened to them.

study.

We will think about ways in which people

It helps you to decide if you want to be in the

can help, and vote for the best ideas.

study or not.

What is the study about? Living with someone with cancer What is it like for people with learning

How often will we meet?

disabilities if someone they live with has

We will meet the group 4 times.

cancer?

1. Meet you all and explain things. Look at pictures. 2. Look at pictures again. This is what we want to find out:

Listen to your stories.

The story of you and your family or friend

3. Think about how people can help.

with cancer

4. Vote for the best ideas.

What was it like for you? What was good?

Say goodbye.

What was difficult? How did you feel? What did people do to help you cope? What could have been done better? What would you say to doctors, nurses and support staff? How should they do?

to people who might be interested in taking part and invited them to an information session. Irene and Gary then met with the groups to explain the study and to

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show the DVD. They made it very clear that everyone should to think carefully before deciding to be in the group. Watching the DVD with Gary and Amanda talking

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Can the study upset you?

remember what we said in the group?

Some people may be upset by the study. We will put a tape recorder on.

It can be upsetting to think about your family or friend with cancer. Maybe that person has died. Talking in the group can make you feel sad

Afterwards, all your words on the tape will be

sometimes.

written on a computer.

Listening to other people’s stories can also

We will then destroy the tape.

be sad.

You may get fed up with being in the group. When we have finished, we will tell others

You must have someone (your group leader,

what we have found out.

a carer, family member or friend) who you can talk to about this.

We will tell them: “This is a good way to help people with learning disabilities who have

Remember you can always stop being in the

family or a friend with cancer.”

group meetings.

We will write in magazines about what we

You or your carer can phone Irene if you

have found out.

want to know more about the study.

Do I have to be in the group?

Irene's phone number is: 020 8725 5497.

No. If you don’t want to do it, that’s OK. If you start in the group but you don’t like it, you can stop. Nobody will be cross with you if you say no.

Or you can send Irene an email. If you want to be in the study, you must sign

Her email address is:

your name on a special form, called a consent form.

[email protected]

If you find it difficult to write, someone else can help you.

Or you can write to Irene. Her address is:

Everything you say in the group is private. Irene will not tell anyone who was in the group.

St George's University of London Division of PHSE Cranmer Terrace

Irene they will not write down your names.

London SW17 0RE

She will use pretend names instead.

about cancer and dying really helped participants to make up their minds. Some people cried but then said they really wanted to be in the group. Others decided that they did not want to do it after all, even though they had seen the information sheet and had thought they would like to come. One person said: ‘My dad died and I don’t want to talk about it’.

Participants were given £80 for taking part in four meetings. (These were cash payments, different and separate from the researchers’ own taxed university salaries.) One participant was worried about her benefits and asked for shop vouchers instead. One service manager disagreed with the payment for her clients: she thought it was a ‘bribe’. We do not think the partici-

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pants took part because of the money, because even in that manager’s group, some people decided not to take part. The money was important though. It showed participants that their contributions were valued and that talking about difficult things was actually hard work. There are also national guidelines that say it is a good practice to pay research participants for their time and effort (INVOLVE 2007).

How did we run the focus groups? Each group met four times. Every focus group meeting started with the same ‘ice breaker’, a game for learning each other’s names. This was led by Gary or Amanda. It was useful for three reasons: (i) It showed people right from the start that Gary and Amanda were part of the research team, (ii) It gave people confidence. Most people seemed a bit worried at first about whether they would be ‘good enough’ to take part in a group and whether they would be saying the right things. Seeing that they were sometimes better at doing the ‘name game’ than the researchers helped them to relax. Starting in the same way each time also gave people a sense of security, making it easier to get the rest of the meeting going and (iii) It really did break the ice! It was important that each group met several times. Participants learned to trust each other. One group of participants that did not know each other at the start ended up exchanging phone numbers and planned to keep meeting without us. This is what we did at each meeting for the cancer study (the breaking bad news study had a similar structure, but the content of the meetings was slightly different): Meeting 1: Watching the DVD again that explains the study. Explaining what will happen in the different meetings. Getting to know each other. Beginning to talk about participants’ experiences (briefly). Some groups found it easy to talk, but some found it hard. Maybe they were not used to talking. It took time to find what worked for each group. Meeting 2: Showing slides with drawings of a fictional (made-up) story of ‘Jim’ whose father is taken ill and goes into hospital. His mother is crying because she is told that the father has cancer. Jim looks sad and worried. We asked the group: ‘What is Jim worried about?’ and ‘What would help Jim? ’ The storytelling worked very well for each group. Meeting 3: Flexible. Each group had different needs and wishes. One group wanted Irene to explain facts about cancer, so she prepared a slide show for this. One group wanted more pictures and stories to think about. One group wanted more time to talk about their experiences. We also included some role-play (see Table 1).

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Table 1

Role play We have shown the group slides of the fictional story of ‘Jim’ whose father is dying of cancer. We ask the question: ‘What would help Jim?’ The mothers of participants 18 and 20 both died of cancer. Participant 20: (immediately) Talking to somebody. Irene: Talking to somebody? Who would Jim like to talk to? Participant 20: Go and talk to the doctor. Irene: What would he say? Participant 20: Just talk about the situation. Irene probes but Participant 20 isn’t any more specific. Irene asks Amanda to act as the doctor, and asks participant 20 whether he would like to pretend to be Jim and talk to the doctor about whatever he wants. Participant 20 doesn’t want to do it. Irene asks for another volunteer; participant 18 volunteers immediately. Participant 18: Hello, my name is Jim and my dad is ill. I need help. Amanda (‘Doctor’): What kind of help? Participant 18: The kind of help that if he dies, how to cope. [Pause] Irene directs Amanda, who is unsure how to respond, that she does not need to give any answers: she just needs to sit there pretending to be the doctor. Irene: That was a good question, well done Participant 18, thank you. Participant 20, is that the kind of question? (Participant 20 shakes his head) What would YOU ask? Participant 20 is now happy to take a turn. He swaps chairs with Participant 18. Irene tells him he can now pretend to be Jim and ask the doctor a question. He looks at Amanda: Participant 20: What brings the illness on? They are no longer with you. [Pause] Irene: That’s a good question too. Participant 20: One day they are alright and then suddenly they’re not. How does that happen? There is some discussion about this with the group. Participant 16 then asks: ‘Can I have a go?’ Participant 16 has autism and so far has contributed what has happened to him, but not how he felt or what his concerns were. He swaps places with participant 20. Participant 16 [addressing Amanda]: What causes cancer? Is there a cure for cancer? [The group agrees that this is a good question. There is some discussion about it. Irene: Participant 16, is there anything else Jim would like to say to the doctor? Participant 16: I didn’t like it when my friend and my brother died of cancer. Reflecting on the role play with the research team afterwards Amanda: I liked the bit when I did the role play. I think that was really good. When Irene just asked the group what they wanted to talk to the doctor about, nobody said anything. But then they wanted to have a go at the role play and all their questions came out. Gary: I think it would have been harder if Niki or Irene had acted as the doctor. It was easier for them to talk to us. They felt relaxed. They felt they could talk to Amanda.

Meeting 4: Based on the earlier meetings, we prepared nine cards with pictures, showing the different things that participants had said would help them. Each participant was asked to select the five ‘top ideas’ in order of preference and put them in voting boxes (‘nominal group tech-

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nique’). We ended the group with a celebration. We brought food and drink and just relaxed together. We took some time to talk about what it was like to be in the group. We had a laugh, which was important because we wanted it to be fun as well. We did not want people to leave feeling sad. It was also a way of saying goodbye to the group. The participants really liked the fact that Amanda and Gary helped to run the groups. One participant said: ‘It would be hard without them in the group. I wouldn’t have been able to cope.’ Another said: ‘I wouldn’t find it easy to explain things if they weren’t there.’ And another: ‘It breaks the ice with the group when you two speak.’ One support worker commented: ‘It’s empowering for people to see Gary and Amanda in that role.’ Here are some of the things participants said about taking part in the focus groups: The group was easy, but it was also difficult. Illness and dying. We didn’t know about it. People with special needs don’t know about it. It is good to have someone like you come and talk to us about it. It can be difficult but it’s very good to talk about it. Difficult. The first meeting was difficult. I needed bravery. After the first meeting I thought, shall I come back or run away? But I came back. I was brave. I’m glad I did. I found things out about cancer that I didn’t know. Coming here I found has helped me as well because I’m not the only person going through it. It’s good to meet a few times because it is too much to take in if it’s only once. I really liked the stories.

How we made sense of everything Here is the question Irene asked the research team: ‘We’ve had 12 h of meetings with people with learning disabilities, and they told us lots and lots of things. If we have just 15 min to tell others what we found, what will we say? What is at the heart of the groups’ experiences and opinions?’ Well, there is a challenge. We had to do what is called ‘data analysis’ to get to the bottom of things. Here is how we did it. All the groups were audio-recorded, and everything people said was typed out. Niki took lots of notes during the groups as well. Afterwards, Niki read everything lots of times to see where people said similar things and where they said different things. Irene read everything as well.

They put all the same ideas together and called them ‘themes’. All four of us then looked at these themes and read out loud sections of what people had said to see whether they fitted into the themes. This took several months. We had to look at the themes and read different sections several times, because to begin with it did not all fit in. Niki thought up the names of the themes, but when we talked about it, we sometimes found that they were not quite right. Gary and Amanda really helped with this. For example, when Niki explained her ideas about people being ‘excluded’, Gary and Amanda felt that it was not totally true. They thought that it was really about being ‘protected’. Niki went back to her desk to look at everything again, and the next time we met, we found that everything fitted better. Sometimes, Niki and Irene interpreted the things participants had said differently from Gary and Amanda (for example, they might think something had been a positive experience for the participant, but Gary and Amanda would say ‘that was really sad’). We would reflect on this and usually found that Gary and Amanda’s interpretation made more sense. At the last meeting, we finally found that we had got it right. For the cancer study, we had four clear themes and a list of recommendations for how to support people with learning disabilities who have family member or friend with cancer. We found easy words and pictures to explain each theme and recommendation. It was a moment for cheers and chocolate cake!

How each of us experienced doing the focus groups together Gary We asked people about their experiences and their ideas and opinions. The groups were very different. Each person had their own voice. They all wanted to be heard. Some were very opinionated. Before we arrived on the scene I don’t think they had anyone to talk to about it. It was like a damn had burst and everything just flooded out. Or taking a cork out of a bottle and everything spews out like a fountain. They didn’t have to stick to the question. They could talk about what they felt. A couple of people almost felt betrayed because they hadn’t been told about their mum or dad having cancer. One person wasn’t told about his other half until she practically passed away. Every time we met it was like he was ready to explode, he was that angry. It was like he had a ticking time bomb inside him. People really liked it when we did the made-up stories. I think they can relate to stories. They can associate it with their lives. They say things like ‘I was like that’ or ‘my dad was like that’. The support staff often had an expression of shock, horror and amazement on their faces, as if they were saying, ‘This person never said this before. I never heard them say that. ’

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It was good to do the groups together. I think the group expected Niki and Irene to run it. Maybe they see Niki and Irene as the learned professionals. But they wouldn’t have been so forthcoming if we hadn’t been there. I don’t use flowery words, I get straight to the point. I just stirred the cauldron a bit and got the ball rolling. I’ve done teaching of medical students at the hospital. I was used to sharing my personal experiences in a group. That helped me. Afterwards we worked towards the end-game. When you’ve done several focus groups, they raise key points that are almost identical to each other. Once you start hearing the same thing over and over, you begin to think: aha… we’re on to something! We talked about how to present our findings in a way that’s easier for people to understand. You couldn’t present the whole focus groups. It would be too much. Amanda All the people in the groups were surprised how Gary and I were helping to run the group. They didn’t expect that people with learning disabilities could do this job. They were thinking that maybe they could go and do a similar thing. Because Gary and I have learning disabilities, they listen to us. They were so surprised when I told my story! I know some people don’t get well from cancer, and they were surprised that I did. What helped me is the course I had done when I worked at a theatre company. To be in front of a group, and to talk in a group: I was already used to that from what I’d done before. The theatre company has given me the confidence to talk in a group. I liked working as a team. We did things together, instead of doing them separate on our own. For example, we did warm-up games at the beginning of each session, and we got everyone to join in. I really liked meeting different people in the groups. We learnt from them too. For example, what it is like for other people to have been through cancer, and hearing about their families. The people in the groups were really pleased that we came to visit them, because they could talk to us about anything they wanted to. When I talked to my support worker afterwards, she was amazed at how much people in the group shared. Niki I think everyone had their specific role in the focus groups, and that was really good. It was clear to each of us what we were there for, and I think it was clear to the participants as well. That really helped. My job was to sit back and take notes. Gary and Amanda were there, present among the participants, sharing stories, encouraging them to tell theirs. Irene was running the group, leading it. I also liked the way Amanda was involved in pressing the button for the slides, and handing out the money. It

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seems small, but I think it’s quite significant. It showed the group that we were a team, working together. I think it was quite empowering for people to see that. Irene Before we started, I thought the preparation Gary and Amanda needed was ‘training in how to run focus groups’. How to facilitate a group and how to keep our own opinions out of it. I had attended an intensive 2 day course on facilitating focus groups and wanted to share my newfound wisdom… but it soon became clear that Gary and Amanda’s role was very different from mine, and very different from what the text books recommend. In order to facilitate effective sharing within the group, what was needed was not Gary and Amanda’s impartiality. On the contrary: their facilitative power lay in their ability to share of themselves within the group, to give their opinion about participants’ contributions and to resonate with them. Both had personal experience of a parent dying of cancer; Amanda had been a cancer patient herself. I had initially briefed them to keep these experiences out of the group, but we found that when they shared them, it helped the group to open up. They also helped the group to see that it was possible and acceptable for people with learning disabilities to speak up in the presence of ‘learned professionals’ like myself. In openly challenging me sometimes within the focus group (‘I’ve never understood that word! What does it mean? ’) and in their ability to share their own experiences and opinions, they acted as role models for the rest of the group. What was particularly impressive and helpful was their ability to comment with warmth and recognition on other people’s contributions. This validated participants’ experiences and helped them to keep contributing. It became clear that this kind of facilitation could only come from researchers with learning disabilities. This is in line with (Fern 2001) who found that the most effective facilitators come from the same population as the focus group participants and with Llewellyn & Northway (2008) who found that participants are often willing to share feelings and insights in the presence of people they perceive as being like them in some way. There is, of course, a danger that researchers’ own opinions and experiences direct and influence the findings. It seems a price worth paying with groups of participants who have historically found it difficult to express their opinions in the presence of those they perceive to be more powerful than them. If Niki or I had shared our own experiences, it would most probably have intimidated the group and blocked their contributions. Support workers chipping in with their opinion were rarely helpful. This was demonstrated very clearly at the first meeting of one group, where I had failed to brief a support worker properly about his role. This support worker began to contribute his own very raw

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experience of having a friend who was newly diagnosed with cancer. He was clearly angry and upset. It left the group (including myself!) rather stunned and not sure how to respond. I took him aside after this and explained that his role in the group was not to give his own opinion, but simply to enable and facilitate the participant to give his. I gave him the option of finding another member of staff to support his client if the topic was too upsetting for him. He chose to remain and kept quiet for subsequent meetings. When he was absent during the third meeting, it became clear how much his client was aware and protective of his needs: ‘My support worker, he’s got a problem. His mate is actually dying now. His mate is going to die soon, in the next 6 months. My support worker is finding it hard. He’s not coping with it. He needs support. It’s doing his head in.’

Conclusion We have enjoyed doing the research together. Some important things we learned are as follows: • You cannot rush things. It takes time to set up the groups and to prepare for them. It is worth taking much time looking at the findings together. Every time we talked about our ideas, we found that they began to make more sense. It is essential to have researchers with learning disabilities to help look at what participants with learning disabilities have said. • This costs money! You need to have enough money in your budget to pay for extra time and for support workers to assist the researchers if necessary (for example, with travel). • We now cannot imagine running a focus group with participants with learning disabilities without researchers with learning disabilities. Such researchers will help participants to share their feelings, experiences and ideas much more freely. They can act as role models and can empower people. • No subject is too difficult for people with learning disabilities to think and talk about. Many people with learning disabilities relish the opportunity to be listened to. There are some things we would like others to think about in the future. • In our focus groups, a researcher without learning disabilities took the lead. We would like to see what happens if a researcher with learning disabilities takes the lead in running the groups. This would need training and preparation. • Our researchers with learning disabilities have been trained ‘on the job’. We are learning by trial and error. This has worked alright so far, but it would be wonderful to be able to offer formal research training and a qualification to people with learning disabilities interested in becoming researchers.

• It is a problem that people with learning disabilities can run into trouble with their benefits if they get paid for their work. The benefit system can be very confusing and rather frightening for people with learning disabilities. • We would really like other researchers to write about their experiences about doing research together, both the good and the bad, so that we can learn from each other.

References Cambridge P. & McCarthy M. (2001) User focus groups and Best Value in services for people with learning disabilities. Health Soc Care Community, 9: 476–89. Cresswell A. & Tuffrey-Wijne I. (2008) The come back kid: i had cancer, but I got through it. Br J Learn Disabil, 36: 152–6. Fern E. (2001) The use of focus groups for idea generation: the effects of group size, acquaintanceship, and moderator on response quantity and quality. J Mark Res, 19: 1–13. Forbat L. & McCann L. (2010) Adults with intellectual disabilities affected by cancer: critical challenges for the involvement agenda. Eur J Cancer Care, 19: 91–7. INVOLVE (2007) Good practice in active public involvement in NHS, public health and social care research. London, National Institute for Health Research. Llewellyn P. & Northway R. (2008) The views and experiences of people with intellectual disabilities concerning advocacy: a focus group study. J Intellect Disabil, 12: 213–28. Parliament UK (2011) House of Lords Debate 4th October 2011 http://www.publications.parliament.uk/pa/ld201011/ ldhansrd/text/111004-gc0002.htm (accessed 16/12/2011) Tuffrey-Wijne I.. (2010) Living with learning disabilities, dying with cancer: thirteen personal stories. London, Jessica Kingsley. Tuffrey-Wijne I. (2012) A new model for breaking bad news to people with intellectual disabilities. Palliat Med, doi: 10.1177/ 0269216311433476. Tuffrey-Wijne I. & Butler G. (2010) Co-researching with people with learning disabilities: an experience of involvement in qualitative data analysis. Health Expect, 13: 174–84. Tuffrey-Wijne I., Bernal J., Jones A., Butler G. & Hollins S. (2006) People with intellectual disabilities and their need for cancer information. Eur J Oncol Nurs, 10: 106–16. Tuffrey-Wijne I., Bernal J., Butler G., Hollins S. & Curfs L. (2007) Using Nominal Group Technique to investigate the views of people with intellectual disabilities on end-of-life care provision. J Adv Nurs, 58: 80–9. Tuffrey-Wijne I., Bernal J. & Hollins S. (2010a) Disclosure and understanding of cancer diagnosis and prognosis for people with intellectual disabilities: findings from an ethnographic study. Eur J Oncol Nurs, 14: 224–30. Tuffrey-Wijne I., Bernal J., Hubert J., Butler G. & Hollins S. (2010b) Exploring the lived experiences of people with learning disabilities who are dying of cancer. Nurs Times, 106: 15–8. Tuffrey-Wijne I., Giatras N., Butler G. & Cresswell A. (2012) People with intellectual disabilities who are affected by a relative or friend with cancer: a qualitative study exploring experiences and support needs. Eur J Oncol Nurs, doi: 10.1016/j.ejon.2012.01.002.

ª 2012 Blackwell Publishing Ltd, British Journal of Learning Disabilities, 40, 134–142