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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.
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.
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.
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.
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.
Breast cancer remains the most common type of cancer in women [
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” [
Women LwBBC report many ongoing and unmet psychosocial needs [
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 [
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 [
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
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 [
Data were analyzed using thematic analysis [
Data analysis process flowchart. (VCRM: voice-centered relational method).
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
Participants’ characteristics (N=21).
Characteristic | Values, n (%) | |
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<31 | 3 (14) |
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31-40 | 6 (29) |
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41-50 | 9 (43) |
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51-60 | 2 (9) |
|
>61 | 1 (5) |
|
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<12 months | 7 (33) |
|
1-5 years | 7 (33) |
|
>5 years | 7 (33) |
|
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Single | 5 (24) |
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Cohabiting | 2 (9) |
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Married | 13 (62) |
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Divorced | 1 (5) |
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White British | 19 (90) |
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Black British | 1 (5) |
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Mixed or multiple ethnicities | 1 (5) |
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Full-time employment | 7 (33) |
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Part-time employment | 4 (19) |
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Unemployed | 2 (9) |
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Retired | 3 (14) |
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Student | 2 (9) |
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Not working through choice | 1 (5) |
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Unable to work due to health issues | 5 (24) |
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Once | 17 (81) |
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Twice | 4 (19) |
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Primary | 11 (52) |
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DCISa | 4 (19) |
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Primary and DCIS | 3 (14) |
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Local recurrence | 2 (9) |
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Secondary | 1 (5) |
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Mastectomy | 13 (62) |
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Lumpectomy | 11 (52) |
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Chemotherapy | 17 (81) |
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Radiotherapy | 14 (66) |
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Tamoxifen | 13 (62) |
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Photo elicitation | 12 (57) |
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Photo production | 9 (43) |
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17 (81) | |
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YouTube | 15 (71) |
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8 (38) | |
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7 (33) |
aDCIS: ductal carcinoma in situ.
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 (
Thematic map: women's use of social media to support self-management when living with and beyond breast cancer.
Most women were active social media users at the time of their diagnosis. Extending their day-to-day use to find support was a logical extension of existing social media practices. Women described gaining support on social media through 3 subthemes: supplementing support from HCPs, navigating informational needs, and feeling emotionally (dis)connected.
Women highly valued the clinical expertise provided by HCPs; however, collectively, they described themselves as cautious users of secondary health care provision. They avoided
I don’t want to be bothering them with phone calls when they are in clinic.
Therefore, women who described using social media to gain support felt unwilling or unable to access their HCPs. Indeed, all women using social media described how easy access to experiential support from other women LwBBC reduced their sense of needing to access HCPs. Furthermore, sometimes women decided that they no longer needed to seek reassurance from their general practitioner:
I mean I tried to make appointments with my GP, but you know the way things are going with the NHS [National Health Service] and all that. It is like three weeks until my next appointment. I don’t need to now. I just go on the group [Facebook group] and think’ oh, OK, alright yeah.
Instead, women can experience closed and secret groups on Facebook, as providing immediate, relevant responses that reassure and inform:
There would be people to talk to rather than having to ring up the nurse, leave a message on the breast cancer nurse line, feeling really bad because they are really busy, and they are running around doing other things and then waiting for them to ring me back perhaps that same day perhaps not that same day erm, to this was...this immediacy that, you know, we get used to with technology erm...
Women at all stages of the breast cancer continuum described their social media use as supplementing professional support and as a way to gain agency by removing their reliance on HCPs as the source of all breast cancer knowledge. By using social media to address questions and concerns quickly, women voiced notions of feeling empowered.
Initially, women used information searching as a coping strategy. For some, information searching began after diagnostic testing and before formal diagnosis. Women reported experiencing information overload in the clinical setting and used social media to fill knowledge gaps at key points in their
Because there’s that much information, you can’t possibly take it all in at the appointment. And when they tell you, you are almost kind of shocked anyway. So, you don’t digest any of it. Nothing is retained. Absolutely nothing is retained.
Women described
You kind of come across a post and there’ll be like 47 comments, by the time you’ve read all of that you’ve had quite an in-depth insight into that particular issue, so I just read a lot.
Using Twitter to follow and learn from other women, LwBBC was described as supporting joint decision making with HCPs:
I found Twitter really useful in that because then I started following lots of people, so by the time I spoke to people I was already pretty well informed, or I felt like I was anyway, um, obviously it gave me the opportunity to ask some questions then.
In addition, women used YouTube to gain visual information relating to practical aspects of treatment and managing the effects of treatment, including lumpectomy, radiotherapy, and mastectomy procedures. Some women used YouTube to watch mastectomies
Women supplemented Web-based information through active and passive consumption of experiential knowledge principally using Facebook, YouTube, and Twitter. By moving in and out of platforms and different groups on platforms, women gathered information at the appropriate time for them, determined by them. This supported women’s ability to cope with the amount of information they encountered when newly diagnosed and supported adjustment and informed anticipation of what the next stage in their breast cancer experience entailed at different stages of the breast cancer continuum. By engaging in seeking, sifting, evaluating, and sharing information, women validated their experiences and were better equipped to advocate for themselves across a range of everyday settings.
Some women used different social media platforms to navigate feelings of disconnection from other people to mediate relationships that provided emotional support and to connect with other women who shared similar experiences. Many described family and friends as
And those times when you are sat home for a week, bored out of your brains, feeling like death, it’s quite nice to connect with somebody that’s going through the same thing, yet you’ve not got the energy to talk so, you know what I mean, so it’s been really good for that because I think I would have felt quite lonely…yeah.
This emotional connectedness was described by 2 women as
I cannot think of a single source that would provide even close to the amount of...even close to the amount of support the YBCN [Younger Breast Cancer Network] has provided for me. I never looked elsewhere.
Many women preferred gaining emotional support through closed or secret Facebook groups or other platforms such as WhatsApp, Skype, and FaceTime, as these digital spaces supported intimate conversations, feelings of proximity, and “the reality of it [breast cancer] sometimes.” Women described using different platforms simultaneously to scale how private or public they were about different aspects of their experiences. After finding social media groups or digital spaces that satisfied individual needs, some women developed personal relationships with other women LwBBC, which remained significant and important to them many years after their original diagnosis.
Women described how breast cancer presented challenges to their sense of identity, which they navigated in numerous ways. The following 2 subthemes are relevant to HCPs:
Postdiagnosis, many women used social media to find
A lot of us didn’t want reconstruction and some were thinking about going flat completely and one of them mentioned the Flat Friends group cos I, I wear a (pause) prosthesis; I didn’t have reconstruction I decided to join that group cos at one stage I thought erm do I go flat completely?
The need to find
Some women identified difficulties with the notion of
Women at all stages of LwBBC described having to work through aspects of their breast cancer experience daily. For those with secondary breast cancer or further along the breast cancer continuum, many women detailed the impact and side effects of treatment as
I can’t have somebody coming every three weeks with me, it’s...who’s got time? Who’s got the energy? Who’s got the effort? I don’t mean that in a bad way, I know that it’s a drag.
For Jo, working through the day to day involved using social media to extend the clinical encounter to her social networks. She used her iPad to connect with her Twitter followers during treatment, drawing on support in real time as and when she needed it.
For some women,
And then I look on the [...] network and quite a few people say, “why are you having Tamoxifen? I'd put up a fight against that. I'm not on Tamoxifen I don't think it's a good idea. I'm having this drug instead and erm” so again that [….] is, now I am having a bit of a worry and a bit of a wobble about being on this Tamoxifen.
Although some women felt conflicted when other women LwBBC challenged clinical guidelines, many women used social media as a tool to gain a sense of control.
Women described (re)gaining a sense of control through 2 subthemes: managing the emotional impact on self and others and being productive
Women described seeking to control the emotional impact of LwBBC on others by shielding them from aspects of LwBBC. Often, women made use of messaging services when initially diagnosed to inform others to (re)gain some control over disseminating their
through social media I think you can be a little bit more honest because (pause) you’ve not got as much invested in their feelings. If you know, what I mean and they’re going through it so you can’t shock or scare them or make them feel (pause). There’s no guilt in telling somebody on social media that yeah you do feel like shit, do you know what I mean, cos they’re not going to come rushing round to your house, so there’s that distance so I think you can definitely feel you can be more honest
Women were purposeful in determining which platforms best supported their preferred communicative approaches and controlled when to publish personal information. WhatsApp provided women with a sense of intimacy, privacy, and connectedness, both with women LwBBC and their family/friends. Where women did not use WhatsApp and were not members of closed Facebook groups but were Facebook users, they posted to achieve responses that were (emotionally) manageable by controlling how they conveyed their experiences:
I would post “first out of six chemos. Last chemo – nailed it.” That kind of thing. Erm, I do put it as very matter of fact. I did not say anything like “chemo is crap. I feel awful.” And I would never post anything like erm, “I’m really down today” or anything like that. It was always very upbeat. I didn’t want anyone to pity me.
Women also reported having to learn to protect themselves emotionally when using social media, as sometimes content was experienced as threatening. Women reported anxiety—“you don’t know what you’re going to find”—when searching for content or reading about others’ experiences. Women described strategies to control exposure to content so that it did not impinge negatively on their psychological health. This included prompt closing of content identified as having the
Women LwBBC reported using their experiences productively through their social media use. In one way some women (re)gained a sense of control by creating contemporary social media–based health resources. These resources were often borne out of the lack of service provision and included the development of new Web-based spaces including Twitter chats (#bbcww) and Facebook groups: for younger women with breast cancer, to support children of parents affected by cancer, and for women who wish to remain
Some women over 12 months postdiagnosis felt
Similarly, engaging with oncologists on social media was seen to support women in making decisions about their own health care. Examples of successful advocacy were acknowledged by others LwBBC as something to
I’ve been able to then go to my Oncologist and say, “Look at this, this is what they’re doing over in America, when are we getting it here?” Or “this is the treatment now available, when can I have it?”
For Jo, trying to influence other women LwBBC to develop positive attitudes toward improving their physical health provided purpose. By sharing updates on her own exercise goals, she sought to engage women in positive self-management behaviors. Jo used social media to inform, educate, and encourage others to be physically active to increase women’s chances of accessing future treatments or surgical procedures through a focused approach to healthy, active living.
Women’s photographs also demonstrated social media being used to actively challenge debilitating cancer narratives, which circulate in the mainstream press and on the Web. Countering problematic cancer narratives and having the right to reply was described as providing emotional release. Some women LwBBC, therefore, use social media as an opportunity for voice and reframing cancer conversations, which reduced their sense of disempowerment. Women can, therefore, develop complex social media identities that enable them to regain a sense of control through immersion in, shaping of, and sharing of expertise with others in ways that reciprocally supports their own individual needs.
This research identified 3 themes relating to women’s use of social media to support self-management:
Women negotiate their entitlement to care [
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
The second theme captures the challenges for women in navigating disrupted identities and coping with
In the third theme—
Although evidence suggests that social media are shifting aspects of the patient-provider relationship [
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.
breast cancer social media
health care professional
living with and beyond breast cancer
This study was funded as a doctoral study by the University of Salford. The authors would like to acknowledge Breast Cancer Care, Macmillan Cancer Support, and the grassroots Facebook groups—YBCN, Flat Friends, UK breast cancer group for survivors and sufferers, and the Word of Mouth Mammography e-Network for sharing details of this study to support recruitment and thank all the women who generously participated in this research.
None declared.