Evaluating Digital Peer Support for Children Cured from Cancer

ABSTRACT

This article describes a case study of the challenges that emerged from a formative evaluation process with the purpose of evaluating a digital peer support (DPS) service for children between 8 and 12 cured from cancer. The evaluation of DPS for children is particularly challenging. While the literature on evaluation with children is extensive, challenges such as risk assessment that become prevalent in the evaluation of DPS are not highlighted. This case study analyzes how the DPS service was evaluated over the course of two usability tests, a two-week diary study, a focus group interview, and a survey. Challenges relating to ethics, trust, risk assessment, and recruitment emerged during the evaluation process. We identify key strategies to handle these challenges: progression, proxies, and reflection. Performing a multistage evaluation process with progressing sensitivity allowed control of some of the complexities of the context in order to balance the degree of the children’s involvement with the degree of sensitivity.

Acknowledgments

We would like to thank Pontus Wärnestål and Caroline Karlsson for their contributions to the planning and execution of the evaluation process. We thank the reviewers who have given valuable comments. We also thank the children who have given their time and energy to help us. Finally, we gratefully acknowledge the grants from the Swedish Research Council, the Swedish Research Council Formas, the Swedish Research Council for Health, Working Life and Welfare (Forte), the Swedish Childhood Cancer Foundation, the Knowledge Foundation, and the Swedish Governmental Agency for Innovation Systems (Vinnova).

Additional information

Notes on contributors

Susanne Lindberg

Susanne Lindberg ([email protected]) is a researcher with an interest in user participation and design of digital peer support; she is a PhD student in the School of Information Technology of Halmstad University, Sweden.

Petra Svedberg

Petra Svedberg ([email protected]) is a researcher with an interest in health promoting interventions directed toward children; she is professor of Nursing Science at the School of Health and Welfare of Halmstad University, Sweden.

Magnus Bergquist

Magnus Bergquist ([email protected]) is a researcher with an interest in health information systems; he is professor of Information Systems at the School of Information Technology of Halmstad University, Sweden.

Jens M. Nygren

Jens Nygren ([email protected]) is a researcher with an interest in health innovations directed towards children; he is professor of Health Innovation at the School of Health and Welfare of Halmstad University, Sweden.