Study protocol published: Involving parents of children treated for cancer as public contributors


In a paper recently published in Research Involvement and Engagement, U-CARE researchers describe how parents of children treated for cancer will be involved in the CHANGE trial as public contributors. The researchers have chosen to embed public contribution in CHANGE to enhance the trial's research quality, relevance, and usefulnes. 

En hand som sätter upp post-its på en vägg
Photo: Mikael Wallerstedt

The CHANGE trial
After a child’s cancer treatment, parents can experience difficult emotions, such as depression and anxiety. U-CARE researchers have therefore developed an online self-help programme, called EJDeR, for parents of children treated for cancer. The CHANGE trial will evaluate whether EJDeR reduces the parents’ anxiety and depression.

Examining public contribution in research
In addition to evaluating EJDeR, the recently published study protocol outlines an examination of public contribution activities within the CHANGE trial. Around six parents of children treated for cancer will be engaged in a Parent Advisory Board, involving them in various trial phases. The board members will participate in online workshops and steering group meetings, with an impact log employed to document ideas and suggestions from members of the board, data about activities, and to assess the perceived impact.

Anticipated and unanticipated changes to the research process, along with potential benefits and harms, will be systematically recorded in the impact log. Semi-structured interviews with board members and public contribution coordinators will be conducted, to evaluate the acceptability, feasibility, and perceived impact of public contribution activities. These interviews will take place six months after the board has been established, and at the end of the trial. In addition to enhance the CHANGE trial’s research quality, relevance, and usefulness, the researchers want to contribute with valuable knowledge on how to embed public contribution in research.

Read the paper ’Involving parents of children treated for cancer in Sweden as public contributors to inform the design and conduct of an evaluation of internet-administered self-help for parents of children treated for cancer: a protocol’. It is written by Joanne Woodford, Christina Reuther, Johan Ljungberg, and Louise von Essen.

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Last modified: 2023-03-24