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

Abstract

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.

People with cancer and their family caregivers’ personal experience of using supportive eHealth technology: A narrative review

“…one or more cancer types. It must be noted that while the review sought to focus on eHealth technology for people being treated or previously treated with curative intent, a small number of selected studies included a sample with a minority of participants with advanced or metastatic cancer (Fang et al, 2020;Grimsbø et al, 2012;Lambert et al, 2020;Ruland et al, 2013;Ure et al, 2020). The authors decided to include these studies as the majority of the sample represented the relevant population, whereby the authors maintained a sample cut-off point of 70% and were using the same eHealth technology as participants with an earlier cancer stage.…”

“…eHealth technology was valued for its role in helping users learn about the cancer experience. Participants with cancer found that information provided through eHealth echoed the advice of their healthcare team and standard care, which helped them understand the language around cancer or address their knowledge gaps regarding information they did not initially understand, potentially due to feeling overwhelmed (Brennan et al, 2020;Gustavell et al, 2020;Hauffman et al, 2020;Ownsworth et al, 2020;Ure et al, 2020). A number of studies highlighted that eHealth enabled people with cancer and family caregivers to prepare for hospital visits, navigate the healthcare system and engage more efficiently with the clinical team (Hauffman et al, 2020;Mohsen et al, 2021;Song et al, 2015).…”

The role of Facebook groups in the management and raising of awareness of antidepressant withdrawal: is social media filling the void left by health services?

“…Studies have reported on Facebook groups supporting all manner of ailments from alopecia to cancer. 1 – 3 There are literally thousands of groups providing information and support to millions of people. A systematic review of data on the use of social media for public health topics in general concluded that qualitative benefits can be derived in terms of learning and education for both patients and physicians.…”

Investigation of Women’s Health on Wikipedia—A Temporal Analysis of Women’s Health Topic

“…Informatics 2020, 7, x 2 of 23 usually face special health risks, such as pregnancy, cervical and breast cancer, and accompanying physical and psychological issues [7][8][9]. Social media are currently utilized as important platforms by women to gain and share specific women-health-related information, to strengthen social supports by building social connections with others, and to self-manage health care [10][11][12][13].…”

“…C3gender gap(22), law enforcement(20), female child(20), police officers(14), Wikimedia foundation (13), New York Times(13), Wikipedia editors (12), Silicon Valley (11), gender bias (9), British Airways (8), New Zealand (8), black women (8), technology industry (7), female officers (6), sexual harassment (6) Inequality and discrimination (work, research), minority group (woman), abuse and violence (sexual violence) C4 glass cliff (28), triple oppression (20), black women (15), Communist Party (9), leadership positions (7), women executives (6), Michelle K (5), United States (5), black feminist (5), gender roles (4), occupational sexism (4), Claudia Jones (4), Socialist Party (4), reverse sexism (4), glass ceiling (4), Supreme Court (4), men and women (4) Inequality and discrimination (work), minority group (black, woman), woman protection (organization, research)…”