Presenter: Asha Solomon
Mentor: Ardith Doorenbos, PhD, RN
Engaging Multi-Sector Stakeholders to Enhance Support for Young Breast Cancer Survivors: Results of a Virtual Participatory Design Workshop
Young and A Survivor (YAAS!) is a diverse network of 30 clinical/academic partners, community-based organizations, and young breast cancer survivors dedicated to enhancing support for young women aged 18-45 who are affected by breast cancer. With an emphasis on young survivors in underserved/under-represented communities, YAAS! takes a comprehensive, holistic approach to cancer.
A workshop was developed using the participatory design (PD) approach – a human-centered research method that unites diverse stakeholders to actively engage in designing services and programs for sustainable change. The goal was to engage YAAS! network partners in a collaborative and interactive method to identify priorities towards developing policy, systems and environmental (PSE) change strategies to enhance support for young breast cancer survivors.
During the three-hour virtual PD workshop, 25 network members joined in six progressive activities to elicit survivor needs, document existing resources in the survivor ecosystem, and identify priorities to guide the project. Findings revealed that most existing resources are clinic- or hospital-based, and that the community-based resources are targeted at specific needs. Resource gaps were identified in seven areas, mostly in the community settings.
The top four priorities that emerged were: provision of culturally-tailored care; access to specialized clinical care; creation of a central resource center; and focus on mental and behavioral health. The PD workshop was a critical step in the larger process to ensure high quality, collaborative, and coordinated care to young women in Chicago who are affected by breast cancer.