Development and Evaluation of the Canteen Connect Online Health Community: Using a Participatory Design Approach in Meeting the Needs of Young People Impacted by Cancer

SIMPLE SUMMARY: Adolescent and young adults (AYAs) impacted by their own or familial cancer require information and peer support throughout the cancer journey to help with their feelings of isolation. AYAs impacted by cancer need safe, secure, and accessible ways to connect with their peers and access information, peer, and professional support. Online Health Communities provide social networks, support, and health-related content to people united by a shared health experience. Canteen Connect (CC) was developed using a participatory design (PD) process, covering a needs assessment, idea generation, and implementation evaluation. The evaluation showed CC was appropriate for connecting with other AYAs. Most AYAs reported satisfaction with CC and a positive impact on their feelings of sadness, worry, and/or anxiety. By using a PD approach, CC fills an important service provision gap in providing an acceptable and appropriate online health community for AYAs impacted by cancer, with initial promising psychological outcomes. ABSTRACT: Adolescent and young adults (AYAs) impacted by their own or familial cancer require information and peer support throughout the cancer journey to ameliorate feelings of isolation. Online Health Communities (OHC) provide social networks, support, and health-related content to people united by a shared health experience. Using a participatory design (PD) process, Canteen developed Canteen Connect (CC), an OHC for AYAs impacted by cancer. This manuscript outlines the process used to develop CC: (1) A mixed-methods implementation evaluation of Version I of CC (CCv.1); (2) Qualitative workshops utilizing strengths-based approaches of PD and appreciative inquiry to inform the development of CC Version 2 (CCv.2); quantitative implementation evaluation to assess the appropriateness, acceptability, and effectiveness of CCv.2. Through several iterations designed and tested in collaboration with AYAs, CCv.2 had improvements in the user experience, such as the ability to send a private message to other users and the site becoming mobile responsive. Results from the evaluation showed CCv.2 was appropriate for connecting with other AYAs. Most AYAs reported satisfaction with CCv.2 and a positive impact on their feelings of sadness, worry, and/or anxiety. CCv.2 fills an important service provision gap in providing an appropriate and acceptable OHC for AYAs impacted by cancer, with initial promising psychological outcomes.