28. “I’m glad she got to tell her story before it was too late”: Why people might say YES to being in the DAPPLE study

The year was 2006. I was about to embark on what would turn out to be a research-career-defining study. I wanted to spend time with people with a learning disability who had cancer, to try and see the world through their eyes and learn about their needs. I had written my first ever big grant proposal, and Cancer Research UK said yes, good idea, we’ll fund it. I had passed my plan by the national Research Ethics Committee, and they liked it too, especially my easy-read information (they were not used to seeing a sheet full of pictures rather than dense text). They were worried what would happen if the person didn’t know they had cancer, but I said, don’t worry, I won’t tell them (that’s not my place) and I have an alternative information sheet that doesn’t mention the C-word.

So I was good to go. Because of the circles I moved in (having just left my job as a hospice nurse), most of the services and staff who could help me find people for the study worked in palliative care. So, this was going to be a study about people whose cancer was terminal. They were going to die.

I’m thinking about this now, because the DAPPLE project is at a similar junction. We’ve got the funding, the researchers, the green light from the ethics committee. We’ve spent many months getting to know the services and the people in the areas where we want to spend-time-with-people. We’re good to go. The next step is actually finding someone with a learning disability, a real person with a story and a family (probably), who hasn’t been well, who may be coming to the end of their life, who may be going to die.

We have met with extraordinary goodwill from learning disability service managers, hospital and hospice staff, community nurses… so many people who want to help us. They can see how important it is that we learn about the stories. “I know someone,” many have said, “who could be good for your study.”

But it’s not as easy as it sounds. Because however nice and friendly our researchers are (and I can tell you, they really are!), what we’re asking is to come into someone’s home at the most difficult of times. Perhaps they have recently been diagnosed with an incurable condition that is deteriorating fast. Perhaps they are just very frail and increasingly unable to manage their lives. Their support workers and family are likely to be devastated by the thought that they might die. Perhaps their home manager is trying to juggle staff (always short of staff) and the staff are unsure how they will cope. Then along comes their community nurse, who says, “There’s this really good project, can they send their researcher along to spend time here?”

Back in 2006, I really understood when people said no. Inclusion in the study usually depended on the goodwill of ‘gatekeepers’, mostly social care staff, who had to be willing to help the person with learning disabilities consent to take part in the study. In practice, this meant that the staff had to be prepared to think and talk about cancer, even if the people with learning disabilities themselves did not know the truth about their illness. In some situations, this just seemed too much for the staff. The manager of one home, where a resident had just been diagnosed with terminal cancer, expressed her reasons for not allowing me access:

It was a pity that I couldn’t include people whose carers were so evidently stressed, as we could have learned so much from them and shared their difficulties with the world (which hopefully helps to do something about it); but this home manager’s reasons were understandable and entirely valid.

So, finding study participants was a time-consuming task, and rightly so. Another challenge was the very nature of the illness itself. Many people with learning disabilities are diagnosed late, and time was often of the essence. Information and consent procedures could take weeks, particularly for those who lacked capacity to understand and consent to the study, as it involved conversations with many parties, including social care staff and relatives. Sometimes staff suggested that I wait until ‘things settled down’ with the person. But I knew that things would probably never settle down – in fact, they were invited into the study precisely because things were not settled down. On two occasions, the person died before I could start visiting. In the case of one man, consent procedures took six weeks because it involved locating his next of kin, an aunt who lived abroad; this man died in the evening of my first meeting with him. I was so grateful to have met him though, even briefly, as I learnt a lot from him and his carers.

It was always a huge privilege when people said yes. And here’s the thing: taking part in the study turned out the be a privilege on both sides. The people I spent time with not only tolerated me, but wanted me to come back again and again. Having someone around whose only job it was to be interested in their situation, seemed surprisingly helpful. The ill person, the family, the staff: they wanted me as a witness, they wanted me to know about their ups and downs, they wanted me to share their lives and ultimately to tell their stories. They wanted me to see when things were difficult, when people were worried or panicking or in pain or kept asking themselves (and me): are we doing everything we can for him? But they also wanted me to share in the story of their lives, their joys, their relationships, their love, the many things that made their final months worthwhile.

Being in the study at this most difficult of times turned out to be important for most people involved, something positive, perhaps even something that could give their lives meaning. Family would ring me on a Sunday afternoon: “She is dying, please can you come?” When I published a book about all these stories (anonymised of course, except for two people who strongly objected to being anonymous), many of the families and support workers came to the launch and wiped away tears. Some families stayed in touch for many years after the study ended. 

It was not just the families who appreciated having me around. The people with learning disabilities, who were at the heart of the study, always greeted me with joy. Some specifically asked me to come and listen to them. Take John, for example. Our first meeting in hospital came at an anxious time. John’s symptoms had returned and he was waiting for the test results.

John was captivated by the story of Veronica, who had inspired a picture book as well as our research. "I’m glad she got to tell her story before it was too late", he said. "How old was Veronica when she died?" I told him I wasn’t sure, but she was probably around 40. "I am 44," John pondered. "I suppose I have done quite a lot in my life, but there are still some things I want to do… Maybe it is a good thing for me to tell my story."

The following week he was given bad news: the cancer was back, and this time it was the end of the road. It made him decide to say YES to being in the study. He said:

From then onwards, John was on a mission. He used my study as a way of making sense of his illness and dying, a way of leaving a legacy. He wanted me to bring a tape recorder along so that he could record his story and I could write it down. John died nine months later, and his story did indeed make it into my book. First chapter, in fact, pride of place. And he changed me. All the people in that study had a huge impact. You could say that the DAPPLE project is part of their legacy.

So, we really hope that there are people out there who are willing to welcome Frankie, Ned, Jonny or Andrea (our DAPPLE researchers) into their homes, to listen to their stories and learn about their lives. We do not take this for granted. Being a researcher is a huge privilege, and we will try our very best to do these stories justice, leaving a legacy for the future.

Written by Professor Irene Tuffrey-Wijne (Project Lead, Kingston University)