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Review
. 2024 Jan 2;10(1):2.
doi: 10.1186/s40900-023-00532-4.

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

Joanne Woodford  1 , Christina Reuther  1 , Johan Lars Ljungberg  1 , Louise von Essen  2
Affiliations
Review

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

Joanne Woodford et al. Res Involv Engagem. .

Abstract

Introduction: Public contribution in research can facilitate the design and conduct of meaningful research, resulting in feasible and sustainable solutions to healthcare challenges. However, the evidence concerning the acceptability, feasibility, and impact of public contribution in research is limited. We will embed a mixed-method examination of public contribution activities into the CHANGE trial. The overall aim of the CHANGE trial is to evaluate the efficacy and cost-effectiveness of an internet-administered, guided, low-intensity cognitive behavioral therapy-based self-help intervention (EJDeR) plus treatment as usual (TAU) versus TAU for symptoms of depression and/or Generalized Anxiety Disorder in a superiority randomized controlled trial with an internal pilot phase. In this protocol we describe how we aim to: (1) involve parents of children treated for cancer in the managing and undertaking, analysis and interpretation, and dissemination phases of the CHANGE trial; and (2) examine the acceptability, feasibility, and perceived impact of Parent Advisory Board contribution to the trial from the perspective of board members and public contribution coordinators.

Methods: We will recruit around six parents of children treated for cancer to the Parent Advisory Board. Board members will contribute throughout the trial during online workshops and steering group meetings. An impact log will be used during workshops to record activities and examine the perceived impact of activities according to board members and public contribution coordinators, including anticipated and unanticipated changes to the research process and potential benefits and harms. Activities will be reported using the Guidance for Reporting Involvement of Patients and the Public checklist. We will conduct semi-structured interviews with board members and public contribution coordinators 6 months after the board is established and at the end of the trial to examine the acceptability, feasibility, and perceived impact of public contribution activities. We will also conduct interviews with board members and public contribution coordinators who withdraw participation. Findings will be reported in accordance with the Standards for Reporting Qualitative Research checklist.

Discussion: We hope adding public contribution to the CHANGE trial will provide guidance on how to embed public contribution in research and add to the evidence base concerning the impact of public contribution.

Keywords: Childhood cancer; Intervention; Parents; Public contribution; Public involvement; e-Health.

Plain language summary

Involving the public in research can help improve research. However, we do not know so much about what impact it has. Here, we describe how we will involve parents of children treated for cancer in the CHANGE trial and how we will examine the impact of their contribution.Even years after end of treatment parents can experience difficult emotions, such as depression and anxiety. We have therefore developed an internet-administered self-help intervention called EJDeR for parents of children treated for cancer. In the CHANGE trial we will evaluate whether EJDeR reduces parent’s depression and anxiety.We will recruit around six parents to a Parent Advisory Board. Board members will help us to: (1) manage and undertake the CHANGE trial including designing trial procedures e.g., participant-facing material and interview guides; and to steer the trial e.g., discuss trial progress and produce research updates; (2) interpret findings; and (3) plan how to communicate findings to parents and the surrounding community.Board members will participate in online workshops. We will record all activities and whether, and if so how, activities are perceived to impact on the CHANGE trial. Board members will also participate in steering meetings with members of our research team. We will interview board members and public contribution coordinators about their experiences working with us and contributing to the CHANGE trial. We hope this approach will help us and other researchers to understand the potential impact of public contribution on research.

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Conflict of interest statement

No competing interests stated by authors.

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