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Online support needs and preferences for survivors of testicular cancer: a qualitative descriptive study
Sonam J Shah1, Samuel Tate1, Mary W Dunn1,2
1Department of Urology, School of Medicine, University of North Carolina, Chapel Hill, NC, USA.
Purpose:
Despite high survival rates, testicular cancer survivors face unique, long-term survivorship challenges. Given the demographics of this population, online resources are well-positioned to provide support, yet substantial barriers persist. This study aims to understand how testicular cancer survivors currently use online support resources and to identify their preferences for a future online support platform.
Methods:
For this qualitative descriptive study, survivors of testicular cancer were recruited from a survivorship research registry, a survivorship clinic, and a community organization. Researchers conducted telephone interviews on care experiences, survivorship needs, online resource use, and online support preferences. Data were analyzed through thematic analysis with consensus coding and narrative summaries.
Results:
Twenty-two testicular cancer survivors were interviewed (median age at diagnosis 30 years old; median survivorship 6 years). Participants used a range of online resources, including medical websites to meet their informational needs and social media to address their experiential and emotional needs. While online resources provided a repository of readily accessible information, multiple issues can limit trust and engagement and cause emotional distress. In envisioning a future survivorship support platform, participants sought a safe, trusted, and user-friendly environment. Desired features include up-to-date medical information personalized to disease type and stage; verified content with moderation and community standards to foster trust; linking information to instrumental support to promote survivorship; and testimonials, peer navigation, and interactive discussion spaces for connection, support, and community.
Implications:
Survivors of testicular cancer expressed strong preferences for a dedicated, online support platform that integrates reliable medical content with community. These results can guide the development and implementation of evidence-based online survivorship programs and digital health interventions to improve long-term well-being and quality of life among testicular cancer survivors.
