Pieter Vandekerckhove1, Marleen de Mul1, Lisanne de Groot2, Henk W Elzevier3, Barbara Fabels4, Soemeya Haj Mohammad3, Olga Husson5, Julian Noij2, Sophia H E Sleeman2, Danielle Verbeek6, Ines Von Rosenstiel7, Antoinette A de Bont1, Eveliene Manten-Horst8. 1. Erasmus School of Health Policy & Management, Erasmus University Rotterdam, Rotterdam, The Netherlands. 2. Dutch AYA Care Network, Utrecht, The Netherlands. 3. Department of Urology and Medical Decision Making, Leiden University Medical Center, Leiden, The Netherlands. 4. SEIN, Zwolle, The Netherlands. 5. Department of Medical Oncology and Psychosocial Research and Epidemiology, Netherlands Cancer Institute, Amsterdam, The Netherlands. 6. Independent Researcher-Oncologist, Groningen, The Netherlands. 7. Oncological Center, Hospital Rijnstate Arnhem, Arnhem, The Netherlands. 8. Radboud University Medical Center (Radboudumc), Nijmegen, The Netherlands.
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.
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: Camila Rosalinde van Ham; Vivian Wilhelmina Gerarda Burgers; Sophia Helena Eva Sleeman; Annemiek Dickhout; Niels Christiaan Gerardus Laurus Harthoorn; Eveliene Manten-Horst; Mies Christina van Eenbergen; Olga Husson Journal: Res Involv Engagem Date: 2022-07-08
Authors: Sophia H E Sleeman; Milou J P Reuvers; Eveliene Manten-Horst; Bram Verhees; Pandora Patterson; Silvie H M Janssen; Olga Husson Journal: Cancers (Basel) Date: 2022-02-24 Impact factor: 6.639