Breast cancer remains the most common type of cancer in women [1]. Owing to the improvements in early diagnosis, treatment, and an aging population [2,3], survivorship rates and life expectancy for women living with and beyond breast cancer (LwBBC) are increasing. However, as health care systems are increasingly stretched, with significant gaps developing in health care resource provision, increasing patients’ abilities to engage in positive self-management behaviors when living with long-term conditions [4,5] has become a global issue [6].

Self-management—defined as “awareness and active participation by the person in their recovery, recuperation, and rehabilitation, to minimize the consequences of treatment, promote survival, health and well-being” [7]—is reported to support patient empowerment, increase self-efficacy, and lead to behavioral changes, while reducing demands on health care resources [4,5,7-9]. However, Rogers et al [9] suggest that more attention needs to be placed on the “contexts, resources, practices, priorities, and networks of patients living with a chronic condition to identify the nuanced ways in which self-care support and long-term condition management can be integrated into the open systems of people’s everyday lives.”

Women LwBBC report many ongoing and unmet psychosocial needs [10,11], including pain, fatigue, fear of recurrence, lymphedema, and hair loss [12-19]. As these complex issues require ongoing support, attending to the everyday resources, practices, priorities, and patient networks that women engage in for their own self-care, could offer health care professionals (HCPs) insights for better health care outcomes.

Social media have the potential to support women LwBBC to manage aspects of their own self-care, including managing unmet psychosocial needs. Social media are defined as a group of Web-based apps that enable the creation and sharing of user-generated content [20]. They offer patients instant access to information and new connections through easy access to other users [21]. Social media have become taken for granted health information resources [22,23] and include, for instance, a cancer tag ontology of hashtags on Twitter that links patients, doctors, caregivers, and advocates. This includes a weekly tweet chat in relation to breast cancer—#bcsm (breast cancer social media) [24,25]. However, research on social media use by women LwBBC is limited to a small number of studies [24,26-39]. These studies have focused either on discrete platform use (eg, Facebook, Twitter) or have adopted methods such as secondary data analysis [26-38], which do not acknowledge the complex ways in which social media are used and experienced by women LwBBC. Furthermore, research on social media as a component of electronic health interventions [6] ignores the experiences of women using commercial social media platforms to create, use, maintain, and generate grassroots informational and storytelling spaces, such as blogs, and community spaces, such as Facebook groups, to support their own self-management. Facebook groups can be open, closed, or secret. Open means anyone can see the group, who is in it, and can join it. Closed groups can also be seen by anyone. The group’s name, description, and member list are publicly visible; however, only those who have been invited to a closed group can see its posts. A secret group is not publicly visible. Women must ask to join secret breast cancer groups and are added by a moderator, and only group members can see group posts. As women are generating digitally mediated support together in Web spaces, understanding how women LwBBC use social media to support self-management and self-care practices can help target informational and psychosocial support more appropriately and provide useful information to HCPs about women’s self-management practices.

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.

A qualitative study was used to explore women’s use of social media to support self-management when LwBBC as we were unable to find previous studies that explored use of multiple social media for this purpose. Semistructured interviews, including visual methods were developed to gain rich, detailed data [40]. Photographs were introduced into the interview setting through photo elicitation (social support images provided by the research team, eg, friends being together, families, HCPs, and mobile technologies, eg, women using mobile phones or laptops) or photo production (photographs taken by women to communicate their experiences of LwBBC) to elicit or trigger conversation [41]. An interview guide was developed by the research team.

Women had to be 18 years or older, with a previous diagnosis of breast cancer. It was not a requirement that women had to use social media at the present time. We were interested in women’s experiences of social media use at any time since diagnosis. We were mindful that some women may have used social media at some point but had not found it helpful. It was as important to capture these experiences. We were interested in how women’s experiences of social media use varied in relation to time since diagnosis. We purposefully recruited women who had been LwBBC for less than twelve months, between 1 and 5 years, and 5 years or more, with equal numbers (n=7) recruited for each temporal period postdiagnosis. Participants emailed the lead researcher (CU) to register interest in participating after seeing study details online (in breast cancer Facebook groups [n=12], Twitter [n=2], charity websites [n=1]) or offline via cancer support centers (n=2), posters (n=1) or through word of mouth (n=3). In total, 44 women were interested in the study. Of the 44 women, 21 consented to participate, with 1 known to CU. Women decided which type of interview—photo elicitation or photo production—they wished to participate in.

Face-to-face interviews carried out by CU were audio recorded and video recorded. The question structure was kept deliberately broad to enable women to have as much space as possible to explore their experiences of social media use. The first half of all interviews followed the same structure using the interview guide to ask broad questions related to personal experiences of breast cancer—women’s overall social media use and use in relation to LwBBC. In the interviews using photo-production techniques, women then shared the photographs they had taken to discuss how they communicated their experiences of LwBBC with others. In the interviews, using photo elicitation techniques, Wortman’s [42] study on social support was used to support probing questions. Photographs provided by the research team were used to prompt responses related to possible providers of social support, including HCPs, work colleagues, friends and neighbors, family including children and parents, partners, peers, and service providers, for example, charities. Interviews took place in university or community settings. Field notes were written after each interview. Considerations about data saturation were guided by the concept of information power [43], that is, the more relevant information a sample holds, relevant to the study, the fewer participants are needed—researcher subjectivity [44] and taking a pragmatic approach to sample size [45], given the resources available. On the consent form, women were asked how they wanted quotes to be credited, that is, with their own name or a pseudonym. Most participants (16/21, 76%) waived their rights to anonymity. Pseudonyms are used for those who retained anonymity. Ethical approval was granted by the University of Salford (approval number: HSCR 15-71).

Data were analyzed using thematic analysis [46], polytextual thematic analysis [47], and the voice-centered relational method [48] approaches. Figure 1 shows a review of the steps taken. Transcripts (including photographs) were inductively coded in NVivo (QSR International, version 11) by CU. Monthly review meetings were held with AMCR, AG, and JC to reflect on coding, to review field notes, and for thematic development.

Participants were invited to review the findings via email. Of 21 participants, 18 (86%) responded to the invitation and were forwarded the findings. Three photo-elicitation participants did not respond to the emailed invitations. The summary of the findings invited participants’ responses by phone or email. Nine participants (9/18, 50%) responded. All (9) accepted the findings. Some offered comments about aspects of the findings that resonated with them. Others offered thanks for the opportunity to be involved.

A total of 21 women (age range: 27-64 years at the time of diagnosis) participated. Interviews lasted between 55 and 168 min (mean 99 min). The number of photographs (n=157) taken ranged from 3 to 47 (mean 17). Participants’ characteristics are provided in Table 1.

A total of 3 main themes with 8 subthemes were identified in relation to why women use social media to support their experiences of LwBBC (Figure 2). For the purposes of this paper, the most relevant themes and subthemes that inform HCPs about women’s use related to self-care and self-management were discussed. Working through the impact of physical changes, a subtheme identified as part of the wider PhD study, was, therefore, not discussed here.

This research identified 3 themes relating to women’s use of social media to support self-management: finding timely, relevant, and appropriate support (support); navigating disrupted identities (identity); and (Re)gaining a sense of control (control).

Women negotiate their entitlement to care [52] and use social media to supplement information provided by HCPs [53-55]. Significantly, women LwBBC at all stages of the breast cancer continuum are concerned about limiting demands on HCPs, for fear of mithering or bothering. This is supported by studies that show patients with cancer as reluctant to discuss psychosocial concerns with their clinicians [56] and users of online health communities (n=89) describing HCPs as too busy for detailed discussions [54]. To supplement the available support, some women are actively involved in digital labor in relation to meeting some of their psychosocial needs. Digital labor in a social media context relates to the unpaid creation of Web-based content and information [57]. In so doing, women articulate the perspective that they are reducing the potential demand for health resources. Rather than moving into new support environments postdiagnosis, such as using Web-based breast cancer charity forums, women’s digital labor includes adapting and changing the social spaces they already use or occupy on social media, as demonstrated with the collaborative establishment of #bcsm [24,25] on Twitter. Evidence suggests that those who have diverse networks—characterized by numerous and varied network members (family, friends, acquaintances, and groups) who are in frequent contact with the individual—have better self-management capabilities among those with long-term conditions [58]. Furthermore, those with diverse networks use formal health care services less often than those in restricted, minimal family, family, or weak tie networks, presumably because of the increased number of connections [58]. Most often, the social spaces used are a logical extension of everyday use with women moving across platforms to suit their unique needs [59], in line with the trend for users to have accounts or profiles on multiple platforms [60-62]. Facebook, YouTube, WhatsApp, and Twitter were the most frequently used platforms in this study. Women adopt complex Web-based searching strategies to satisfy multiple needs, including timeliness (immediacy), relatability (women like me), and authenticity (experiential experts).

The first theme reports how women, by moving in and out of different groups and social media platforms, gain a sense of self-efficacy by gaining information at the appropriate time for them, determined by them. This supports women’s ability to cope with the amount of information they encounter at challenging times along the breast cancer continuum and supports adjustment and informed anticipation of what the next stages in their cancer experiences entail. Using different social media platforms at different times demonstrates active and conscious decision making in tailoring connection and information seeking according to specific needs at any point in time.

Feeling an emotional connection to other women LwBBC was a significant factor in using social media, particularly when women felt disconnected from their usual support structures. Some women found that WhatsApp provided mediated intimacy [63] and supported the continuation of relationships postdiagnosis that felt disconnected or strained when face to face. By introducing everyday experiences of LwBBC into WhatsApp group conversations, women normalized conversations about cancer and succeeded in attending to their need to talk about their experiences. Women experienced WhatsApp as enabling message recipients to craft effective supportive responses.

The second theme captures the challenges for women in navigating disrupted identities and coping with biographical disruption [64-66]. Social media afford opportunities to link with and learn from similar others. When women experience a gap in service provision, they create or join niche groups [67] to find likeminded women. However, sometimes women find that participating in Facebook groups or on Twitter disrupts the validity of their experiences. They withdraw to better support their self-care. Women’s experiences encapsulate the ongoing debate about the internet’s potential to create and diminish community [68] with women experiencing participation as both positive and negative, sometimes simultaneously. More research is required to understand whether participation in social media conversations impacts adherence to clinical guidelines, including tamoxifen adherence and engagement in physical activities.

In the third theme—(Re)gaining a sense of control—women work to limit the burden of LwBBC on their families by self-managing aspects of emotional work through other women on social media. WhatsApp and Facebook Messenger were sometimes used following initial diagnosis to inform others. This was protective of psychosocial health by removing uncertainty around sharing the diagnostic narrative and afforded a sense of control through framing experience to influence the type of response required. On Twitter and in closed and secret groups, managing exposure to other women’s experiences is challenging. Strategies employed to limit exposure to potentially threatening content support previous research [69] and align with women’s approaches to information searching in relation to breast screening [70]. Similarly, push notifications on smartphones controlling the flow of information [71] from breast cancer groups acted as negative constant reminders of breast cancer. Being able to control information flow by changing notifications enabled a sense of control. The ability to use social media to compartmentalize the experiences of LwBBC was seen as a benefit of social media use.

Although evidence suggests that social media are shifting aspects of the patient-provider relationship [72], the original research aims of this study did not include generating outcomes for HCPs as a specific objective. However, the findings indicate that there are opportunities for HCPs and patients to work closer together to understand the benefits of social media use to support self-management. To encourage open conversations with patients, it may be useful for HCPs to encourage women LwBBC to share if and how they are addressing their self-management needs through their interactions with other women on social media. Given that many breast cancer groups on Facebook are closed or secret and WhatsApp groups are encrypted, there are challenges for researchers and HCPs alike in gaining awareness of what is shared in these spaces without dialog. Understanding which platforms or specific groups women find useful as self-management tools could enable practitioners to signpost other women to social media resources that women find beneficial. Discussing the knowledge gained by women through platforms and social media groups provides opportunities for HCPs to support women’s appraisal of information and could encourage open discussion about different approaches to self-management. Furthermore, there are opportunities for breast care nurses and oncologists to guest-moderate chats in grassroots social media spaces to support women’s decision making and strategies for self-management.

This was a qualitative study to understand the complexity of women’s social media use when LwBBC. However, it did not provide insight into the relative extent of different aspects of social media use across a broad and representative population and did not provide insights into men’s experiences of social media use when LwBBC. Further research should attempt to capture quantitative data to identify how social media use develops self-efficacy when LwBBC, supports self-management behaviors and impacts the overall sense of health and well-being across the cancer continuum.

The ability to determine how, when, and where to access 24-hour support using social media provides opportunities for women globally to proactively engage in self-management practices unavailable a decade ago. Although women use social media in part to reduce demand on health care services, it is unknown whether use supports decision making or exacerbates issues within the clinical setting, for example, through poor decision making, which later increases demand for clinical services. Understanding HCPs’ perceptions of the use of social media to support 24-hour self-managed care is an area for further research inquiry.