Exploring Strategies for Using Social Media to Self-Manage Health Care When Living With and Beyond Breast Cancer: In-Depth Qualitative Study

Background: As breast cancer survival rates improve and structural health resources are increasingly being stretched, health providers require people living with and beyond breast cancer (LwBBC) to self-manage aspects of their care.

Objective: This study aimed to explore how women use and experience social media to self-manage their psychosocial needs and support self-management across the breast cancer continuum.

Methods: The experiences of 21 women (age range 27-64 years) were explored using an in-depth qualitative approach. The women varied in the duration of their experiences of LwBBC, which facilitated insights into how they evolve and change their self-management strategies over time. Semistructured interviews were analyzed inductively using a thematic analysis, a polytextual analysis, and voice-centered relational methods.

Results: The use of multiple social media platforms, such as YouTube, Facebook, WhatsApp, and Twitter, enabled women to self-manage aspects of their care by satisfying needs for timely, relevant, and appropriate support, by navigating identities disrupted by diagnosis and treatment and by allowing them to (re)gain a sense of control. Women described extending their everyday use of multiple platforms to self-manage their care. However, women experienced social media as both empowering and dislocating, as their engagement was impacted by their everyday experiences of LwBBC.

Conclusions: Health care professionals (HCPs) need to be more aware, and open to the possibilities, of women using multiple social media resources as self-management tools. It is important for HCPs to initiate value-free discussions and create the space necessary for women to share how social media resources support a tailored and timely self-managed approach to their unique psychosocial needs.