Abstract
Abstract Background: Project Life is a virtual wellness house led by people living with metastatic breast cancer (MBC) for people with MBC. Through the organization’s targeted programming and curated content, Project Life promotes key dimensions of wellness: physical, emotional, social, spiritual, and financial. Project Life was created to fill the gaps in survivorship care for people with MBC specifically. The objective of this study was to qualitatively evaluate members’ experiences with Project Life, understanding the impact of the organization and potential areas for future growth. Methods: From March 2022 to May 2022, we conducted semi-structured qualitative interviews virtually with members of the Project Life wellness community. The study design and primary objectives were designed in direct collaboration with Project Life leadership. A study flyer was distributed by e-mail and social media to the Project Life community. Participants were eligible if they self-identified as having MBC, were a member of the Project Life community and could complete the interview in English. Participants were asked a series of questions about how they heard about the organization, the types of programming they have participated in, the greatest benefits of Project Life, and areas for future growth and improvement. Interview transcripts were transcribed verbatim and analyzed. We then analyzed transcripts with phronetic iterative analysis, to uncover contextually grounded, emergent themes through synthetic coding. Results: We interviewed 36 women with MBC who were members of the Project Life Wellness Community in Spring 2022. Overall, 22% of participants identified as people of color, including Black, Latina and Asian women. In terms of age, 8 participants were 30-45, 15 were 46-59, and 13 were 60+. The overwhelming majority heard about Project Life through social media, with only one participant indicating they learned about the organization from their cancer center. Many participants stated that they wished cancer centers connected patients to external MBC support organizations like Project Life. The most commonly utilized Project Life programs included healing circles, legal clinics, cooking classes, and therapeutic art. Many participants endorsed having improvements in quality of life from being engaged with Project Life through MBC-specific curated content and the strong sense of community. Several participants indicated the appeal of participating in an organization that was developed by people with MBC for people with MBC. Additional suggestions for content included finding information about clinical trials and increasing caregiver programming. Suggested opportunities for growth included programming across time zones, facilitating geographic connections, and partnering with other MBC advocacy organizations. Conclusions: Patient-led and curated virtual communities are filling substantial gaps in survivorship care for individuals with metastatic breast cancer. Through its virtual format, the Project Life wellness community has a widespread reach and offers a promising model for intentionally curated metastatic survivorship care. The unique virtual format of Project Life should spark creativity in how quality survivorship care for people with MBC can be delivered. Healthcare settings including cancer centers can play a larger role in connecting people with MBC to external support organizations to better ensure survivorship needs are being holistically met. Citation Format: Mya Roberson, Joshua Woods, Lesley Glenn, Deltra James, Julia Maues. "It’s like Coming Home": A Qualitative Evaluation of Project Life a Virtual Wellness Community for People Living with Metastatic Breast Cancer [abstract]. In: Proceedings of the 2022 San Antonio Breast Cancer Symposium; 2022 Dec 6-10; San Antonio, TX. Philadelphia (PA): AACR; Cancer Res 2023;83(5 Suppl):Abstract nr P5-08-16.
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