As we have described elsewhere, people got involved initially for a mixture of reasons, including wanting to help others and improve medical science, as well as possible personal benefits. Not surprisingly these same motivations were still at the heart of why they continued being involved. We also asked people whether they had discovered other reasons or benefits they had not anticipated, and whether their motivations had changed.
As well as making things better for others, Peter has met interesting people, used his skills and enjoyed himself. It has given him a sense of control after having cancer.
Maggies initial motivation was personal fascination with the research, but now shes inspired by knowing it can help others.
Mary is passionate about encouraging researchers to take user involvement seriously.
Dave A has met some amazing people. It has boosted his self-esteem and he feels valued. Occasionally it’s frustrating but usually positive.
Sitting at the table with well-known experts has been wonderful and has built Janices confidence.
Beryl enjoys the friendships with other people on the group who’ve had cancer.
Margaret loves the science and admires the researchers she meets.
Helen loves involvement so much it has become a slight addiction. But she would like more feedback on how shes made a difference.
Working with some very bright people has filled a gap in Charles’s life after retirement. It would be icing on the cake to learn later about the difference it’s made.
Tom never expected to meet so many interesting people. It gave him a new direction in life when cancer stopped him working.
Dave G has gained self-confidence, knowledge and great enjoyment. In retirement he has finally found the right job and feels appreciated.
Sharon has developed confidence and skills but she isn’t sure yet how this might feed into her working life. A career in involvement doesn’t seem possible.
Involvement has rebuilt Rosies confidence and supported her recovery from mental illness. Now it has become her career.
Brin thought involvement would aid his physical stroke recovery, but it has also helped him psychologically in a way he never imagined.
When Maxines husband became very ill, her involvement work helped her take her mind off the worry.
Derek is now healthier and better informed generally. He feels able to ask the right questions about his health and the evidence for treatments.
Involvement can become very time-consuming and tiring, and it may all get too much for people. Sometimes the difficulties and frustrations may make people give up. Neil got involved to help his recovery after a stroke, and was now starting to reduce his level of activity again. He said, ‘Socially, emotionally and intellectually it’s been very helpful. And that was the reason why I did it and fine, when I feel I’ve recovered fully I might not bother with it, it just depends.’ Hazel knew of people who had dropped out when involvement didn’t live up to expectations.
Hazel has seen good people leave if they feel they’re not properly involved.
Several people who had themselves been involved in many different roles wondered if – much as they enjoyed it – there would come a time for them to step down (see ‘Long-term involvement and expertise‘). But others found the more they became involved the more they enjoyed it and wanted to continue their involvement.
Helen loves involvement but worries she is losing her lay perspective. She would like to move on to a paid role.
Last reviewed July 2017.