Lessons for Employing Participatory Design When Developing Care for Young People with Cancer: A Qualitative Multiple-Case Study

Journal of Adolescent and Young Adult Oncology, vol. 10, pp. 404–417

Abstract

Purpose: Participatory design (PD) is a collective creative design process involving designers and nondesigners. There is limited reporting on the experience of using PD for adolescent and young adult (AYA) care. This study summarizes lessons from employing PD to develop care for AYAs with cancer. Methods: A qualitative multiple-case study method was conducted of three PD processes addressing food (FfC), intimacy and sexuality (I&S), and integrative medicine (IM) in caring for AYAs with cancer. Results: Local key stakeholders, who were exposed to a problem and had not been successful at solving it individually, were recruited to “dream” together. Through this synergy, a shared understanding of the problem and a joint mission emerged to find a solution. PD tools were used to develop a problem definition. An open mind and explorative research helped to understand the problems, and stakeholders were managed such that idea-sharing and learning were enabled. Designers translated ideas into prototypes. The PD process was prolonged due to the hierarchical hospital environment, business considerations, and additionally required evidence. The FfC program produced an effective new food service for the whole hospital. The I&S initiative developed a podcast, two articles, and a prototype website. The IM project developed a pilot study. Conclusions: For a PD process to successfully develop care for AYAs, one needs to use designers and skilled people, PD tools, and an open-ended approach to visualize and materialize new forms of care. Furthermore, recruitment and facilitation techniques help leverage knowledge and create a synergy in a democratic environment between stakeholders.

Authors 13

1. Pieter Vandekerckhove corresponding

   Erasmus University Rotterdam

   Affiliation as printed

   Erasmus School of Health Policy & Management, Erasmus University Rotterdam, Rotterdam, The Netherlands

2. Marleen de Mul

   Erasmus University Rotterdam

   Affiliation as printed

   Erasmus School of Health Policy & Management, Erasmus University Rotterdam, Rotterdam, The Netherlands

3. Lisanne de Groot
   Affiliation as printed

   Dutch AYA Care Network, Utrecht, The Netherlands

4. Henk Willem Elzevier Aachen Department of Urology and Medical Decision Making

   Leiden University Medical Center

   Affiliation as printed

   Department of Urology and Medical Decision Making, Leiden University Medical Center, Leiden, The Netherlands

5. Barbara Fabels

   Stichting Epilepsie Instellingen Nederland

   Affiliation as printed

   SEIN, Zwolle, The Netherlands

6. Soemeya Haj Mohammad Aachen Department of Urology and Medical Decision Making

   Leiden University Medical Center

   Affiliation as printed

   Department of Urology and Medical Decision Making, Leiden University Medical Center, Leiden, The Netherlands

7. Olga Husson

   The Netherlands Cancer Institute

   Affiliation as printed

   Department of Medical Oncology and Psychosocial Research and Epidemiology, Netherlands Cancer Institute, Amsterdam, The Netherlands

8. Julian Noij
   Affiliation as printed

   Dutch AYA Care Network, Utrecht, The Netherlands

9. Sophia H. E. Sleeman
   Affiliation as printed

   Dutch AYA Care Network, Utrecht, The Netherlands

10. Daniëlle Verbeek
    Affiliation as printed

    Independent Researcher-Oncologist, Groningen, The Netherlands

11. Inès von Rosenstiel

    Rijnstate Hospital

    Affiliation as printed

    Oncological Center, Hospital Rijnstate Arnhem, Arnhem, The Netherlands

12. Antoinette de Bont

    Erasmus University Rotterdam

    Affiliation as printed

    Erasmus School of Health Policy & Management, Erasmus University Rotterdam, Rotterdam, The Netherlands

13. Eveliene Manten‐Horst

    Radboud University Medical Center

    Affiliation as printed

    Radboud University Medical Center (Radboudumc), Nijmegen, The Netherlands