We responded to a call for proposals from the Department of Children, Schools and Families. They said they wanted user involvement. So in our original draft we said we would involve people in planning the research and as part of our advisory group. But we were pushed by the funders to consider taking it quite a bit further. They indicated that they would be willing to support us financially to do something more ambitious. So our motivations were partly about satisfying the funders and partly about satisfying ourselves. When we were pushed to think about it, we thought it could be very interesting and useful. We were willing to give it a go.
We wanted to recruit people who had similar experiences to the service users who were going to be participants in the research. We knew birth relatives of adopted children typically have a number of problems – such as mental health problems or learning difficulties. We knew we would be interviewing people like this. So we tried to recruit birth parents with similar life experiences.We made use of the relationships we had already established with adoption agencies and support agencies as well as individuals. We asked the agencies to find people who matched our criteria – experience of having a child adopted and an interest and willingness to take on the role. I also contacted some adoptive parents who had been participants in a previous project of mine – so they also had some experience of taking part in research. We also wanted to involve some parents from ethnic minorities, so we went to a black adoptive parents group. The group leader circulated our publicity material to their members. We decided to try to recruit quite a lot of people because we knew we would be working with people who had a lot of other challenges in their lives – and that the project was going to run for several years and we weren’t sure if people would be able to make a commitment for that whole time. So we thought if we lose a few people along the way, we’ll still have enough at the end.
This was a major study of adoption support that took place over a number of years. There were different parts to the study. Imogen [Cooper, a birth mother] was involved in the part that evaluated the support services provided to birth relatives, particularly the parents and grandparents of children in compulsory adoptions. Two groups of birth parents were involved. They helped at all stages of the research, except the data collection phase. They helped to plan the overall design, analyse the data and interpret the findings.
They will also be taking part in the final launch conference. The birth parents have been involved in planning the conference. They said we needed to get the voice of service users across to make it more powerful. So we’ve been talking about people participating in the conference. A lot of them said they were willing to take part, but it’s going to be a high profile event with 150 people. It’s a lot to ask people to speak live and so we have decided we will prerecord it. We’re going to take people to Norwich where the University has a TV recording studio. We’ll ask them to reflect on their own experience and use edited highlights. Then I don’t have to worry about people getting stage fright or not turning up. They are all invited so they will then have an opportunity to talk to people on a one-to-one basis. So that will raise their profile and the professionals won’t be able to ignore them. We’ll put them up and pay for their expenses and take them out to dinner – it will be a last hurrah!
One of the major challenges was to ensure that service users were clear about what was expected of them. At one of the first meetings, the service users started to tell us about their experiences of losing their children to adoption. Obviously this became a very emotional meeting with people telling their stories and people getting upset. It was very difficult for people to take in what we were wanting from them – and we were just learning ourselves. It brought it home to us how difficult it is for people to understand what we were after and how complex the tasks are. We didn’t want to say we weren’t interested in people’s experiences as this is exactly the perspective we needed. But we needed people to be able to focus on the study. We felt stuck.
So we decided to get our heads together with people who were working in practice. We found a woman who was a birth mother and a counsellor working with birth parents and also a person working in citizen advocacy with people with learning difficulties. They had a lot of relevant experience and helped us with the way forward.
Before we met with the second group, we did a lot more preparation. We rang up everyone who expressed an interest and went to visit people in person if we felt this was necessary – so that then people were happy to meet in a group. We also gave them an option to be involved individually. On the day we knew we had to manage people’s personal experiences. So we began with that – because that’s where everyone was coming from and what they had in common. So we allowed people some space to say that to begin with, in a managed and controlled way then closed it down and moved it on. The two practitioners facilitated the day and helped with that. We also had to be clearer about the role of a user consultant. I remember saying to them very clearly: “It’s really important that you understand that why we’ve asked you to be here – it’s about what we’re hoping you’re going to do for us – it’s about you helping us, not us helping you.” That was a key moment. People seemed to find it empowering. They’re so used to engaging with people in terms of trying to get help. It was a new idea that they were being asked as an expert to give their help and advice.
To some extent we were learning as we went along throughout the whole thing. But I think what helped was that at every stage, we thought it all through and wrote it all out before we began anything. And getting the advice from people with experience of working with birth parents made an enormous difference. What has been absolutely vital is that we’ve had the support of our funders to do it. It was quite expensive – our budget was £12k. So we’ve been able to treat people with respect, to pay them for their time and their travel expenses. We could meet in nice venues, that had a nice canteen and everyone could have what they wanted for lunch, lots of drinks and cakes and biscuits. We looked after people. It backed up this message – you’re helping us and we’re going to reward you for that. That really helped people to understand the role. And we’ve kept in touch with people – like sending them Christmas cards – throughout the whole research phase which took two years. That was a long gap – people came back three years later to help with the analysis of the data. Every one of the birth parents who started with us at the beginning of the project, has stayed with us right till the end. We didn’t lose any one of them in all that time.
The birth parents made a big difference to all aspects of the recruitment. First we mocked up a leaflet. Everybody savaged it. They said it had way too much writing in it and it looked cheap. They advised us to have it professionally designed so that people would know we were kosher and that the study was respectable. They told us to put on the minimal information – just to get people to call up – then we could give all the chapter and verse on the phone. Too much detail would put people off. They also helped us to understand what would motivate people to take part. They really emphasised the importance of saying – you’ll be able to help other people like you. They advised us to have a website, to have a freephone number and to allow people to text us. Texts are cheaper and a lot of people only have mobiles. We had to find some people via agencies. The birth parents told us that it’s really important that the research team was seen as completely independent of the statutory agencies. When we sent out the invitation letters, they told us to make sure there was a stamp on the envelope and that it hadn’t gone through the social service franking machine – or it would have just gone in the bin. They helped us to understand how hostile people feel to statutory agencies and social work. After all this, we didn’t have any problems recruiting to the study. In my experience recruiting birth family members is very difficult. We knew of other studies having real problems getting started because they weren’t getting any response. But we met our target and within our time-scale. I think that’s because our birth parents helped us get our approach right.
The birth parents also infleunced the design of our study. We had planned to do the majority of interviews by phone and the birth parents said you need to offer face-to-face interviews. So we had to go to our funders and say this might take longer and cost us more. Thankfully, they said fine, if your service users are telling you that, we will support you. Our birth parents were also very against written consent forms, because birth relatives may be suspicious of signing anything, or may not be able to read it well or understand what they are signing. And when they looked at a draft form they said it sounded like a police caution! They said it’s better if you just explain it to people and get a record of their consent on tape. We had to persuade two local authorities that we were still meeting their requirements for research governance, but they listened to us because we had the weight of the service users behind us.
We didn’t have a clue how to involve people at the data analysis stage. We looked at what other researchers had done and it seemed they just did the analysis and showed it to service users. This seemed a bit tokenistic and I felt we should involve people before we did the analysis, not after. We had massive amounts of data and we thought it would be impossible to ask them to advise us on all of it. So we thought about where their input would be most helpful and focused on that. We didn’t want them to become like us – we wanted to them to keep their unique perspective. We felt we needed to introduce them to the data in some way but also keep the confidentially. We thought about doing a presentation or handout or slides, but then remembered what everyone had said about literacy. So we decided to present the material by audio on a cd. We selected ten-minute excerpts from some of the key interviews, and made sure these reflected the issues we were trying to tackle in the analysis. Then we hired actors to read them out and recorded it all with our digital recorder. We only paid the actors about £50 as it was an hour’s work. They did it really well and read the words with feeling and meaning.
It worked incredibly well. The birth parents could relate to them immediately. People said this is the best meeting we’d had – because the interview material was so powerful. The birth parents gave us their views on what they thought about the interviews. A lot of what they said agreed with what we thought, but some of it was really different and that was particularly valuable. For example, they rejected the idea of recovery or getting over your child being adopted – saying that you never get over it and that you only learn to cope with it better. So our analysis was then focused on the concept of coping and how well or badly people were coping with the loss of their child. What they also brought to our attention was that what people tell us is only part of their experience and people can present themselves in a different way to the way they actually feel. We wouldn’t have got that without the birth parents’ insights. That really was a phase of the project that we understood how our service user can bring a different perspective – and how we can’t see the world through their eyes.
When we had a sense of the main findings, we had another meeting with the birth parents. We made posters without much writing and lots of drawings to illustrate the main things we were going to be saying. We asked the birth parents to focus on the issue of support needs. We asked them to tell us their views of the ideal service that would meet these needs. That helped people to think out of the box and they were very creative. But these were very concrete ideas. They made very practical suggestions. They emphasised the role of peer support much more than we would have done. I’ve just put these ideas word-for-word into one of the final reports. I can’t really improve on them.
Involvement has been important all the way along and we’ve got something out of it at every stage. Maybe it was less useful asking them to comment on the data collection – because that’s where the gap between us and them was smallest. Because actually I’ve got a lot more experience than them in terms of interviewing people, but in other areas they clearly have the expertise and I haven’t. Maybe it’s most useful where there’s really added value from gaining the user perspective.
Be ambitious. Don’t play it too safe. We were learning as we went along. We felt out of our depth some of the time. But we got a lot out of it.
Don’t just involve people who are used to being involved, or who are less troubled in life. We got a lot out of the birth parents who worked with us who had more problems.
Get people involved at the proposal writing stage to check out you’re actually asking the right research questions. To give people a real say you have to get them in earlier. Our birth parents felt we hadn’t invited them in soon enough. If they had been given a blank sheet they would have asked different questions to us. It made me realise the importance of involving users right from the beginning – right from when funders are developing the brief.
It takes time and resources – you’ve got to be committed to it. At times that’s all we had – commitment. We didn’t know how we were going to do it. But we were going to give it a damned good go!
It is very challenging work. One of the biggest challenges was helping people to move on from talking about their own experiences to thinking about the experiences of the birth relatives taking part in the study. We had to be quite directive about that at times. We had to be kind but firm.
Pay people in cash on the day. If they are on a low income they need their train fare back that day otherwise they will be out of pocket. We had to fight that corner with the university. We had to be clear we weren’t making salary payments. But in the end they did agree to give us loads of petty cash.
Keep an open mind about what people can do and what they contribute. People will be very, very hard working and dedicated.
Beth NeilSenior Lecturer in Social WorkUniversity of East AngliaNorwich NR4 7TJ
Tel: 01603 593562Email: E.Neil@uea.ac.uk
This case study first appeared in Blackburn H., Hanley B. and Staley K. (2010) Turning the pyramid upside down: examples of public involvement in social care research, INVOLVE, Eastleigh.