Recruitment has begun for the CHANGE pilot study
Research Assistant Louise Asberg Dun and PhD Candidate Christina Reuther have now sent the first invitations to potential participants in the CHANGE-pilot study.
Louise von Essen and colleagues at U CARE have developed the self-help programme EJDeR for parents of persons who have been treated for cancer during childhood. The programme and planned study procedures for a future evaluation of EJDeR will now be tested in the CHANGE pilot study, and recruitment has now begun.
The EJDeR self-help programme
EJDeR aims to improve the well-being among parents of persons who have been treated for cancer during childhood. The programme is based on cognitive behavioural therapy (CBT) and includes different psychological treatment techniques. It has been developed in close collaboration with parents with lived experience.
– During the preparations for CHANGE pilot, we have worked closely with a parent advisory board consisting of parents with lived experience, says Research Assistant Louise Asberg Dun. They have, among other things, provided valuable feedback on the study design and recruitment procedures. We will continue to collaborate with the group, including in the analysis of data and communication of results.
EJDeR consists of workbooks, audio files, and video vignettes, and is delivered with guidance from a parent guide.
– The parent guide guides participants throughout the programme, says PhD Student Christina Reuther. Guides are trained in CBT therapy, and participants have weekly phone contact with their guide during the 12-week programme.
60 parents to be recruited
The study aims to recruit 60 parents, who will be randomly assigned to one of two groups. One group gets access to the EJDeR programme, while the other does not. Both groups have access to usual care within the Swedish healthcare system.
Carrying out recruitment during the summer may have both advantages and disadvantages.
– For some, it may work well to complete the programme during their vacation when they might have a bit more free time, while others might have preferred a different time of the year, says Louise Asberg Dun.
The study has been prepared during many years and is based on several years of research conducted by Professor Louise von Essen, in collaboration with PhD students and other researchers.
Both Louise Asberg Dun and Christina Reuther are pleased that the study now has started.
– It feels great to finally begin recruitment after all the preparational work, says Louise Asberg Dun.
– Yeah, and it’s rewarding to now be able to offer this programme to parents who hopefully will benefit from it, Christina Reuther adds.
Miro Anter
CHANGE pilot project team
Principal investigator: Louise von Essen, Professor, Uppsala University
Project members:
Louise Asberg Dun, Research Assistant (Uppsala University)
Paul Farrand, Professor (University of Exeter)
Kine Johansen, Researcher (Uppsala University)
Martin Johansson, Psychologist and Affiliated Researcher (Uppsala University)
Päivi Lähteenmäki, Associate Professor (University of Turku)
Christina Reuther, PhD Student (Uppsala University)
David Richards, Professor (Western Norway University of Applied Sciences)
Filipa Sampaio, Associate Professor (Uppsala University)
Holly Sugg, Lecturer (University of Exeter)
Ella Thiblin, Researcher (Uppsala University)
Joanne Woodford, Associate Professor (Uppsala University)
Parent advisory board