What Young Women with Breast Cancer Get Versus What They Want in Online Information and Social Media Supports

Abstract

Purpose:

Young women are high users of social media (SM), but information is lacking on whether online supports including SM meet the needs of young women (<40 years) with breast cancer (YWBC). YWBC are a vulnerable population who experience many psychosocial challenges alongside cancer diagnosis and treatment. This study aimed to gather data on what YWBC get versus what they want in online support.

Methods:

Semi-structured interviews explored YWBC's perceptions and use of online information/SM, including visions for ideal support. YWBC between the ages of 18–40 were recruited via two urban oncology clinics. Recruitment continued until redundancy of responses was achieved.

Results:

Thirteen YWBC participated in the study. Some reported benefits of online supports included connection with similar others, emotional support and ease of use. These benefits were balanced by drawbacks, such as a lack of appropriate/credible information and/or distressing information. Respondents spontaneously mentioned coping strategies such as managing information exposure and regulating SM use to mitigate against harms of online supports. Collectively, participants described nine facets of an ideal online support hub, which could function as a one stop shop for informational, practical and emotional supports for YWBC.

Conclusion:

Developing a multifunction online support hub may help women to find credible and useful information, rapidly, and address current limitations of online supports.

Introduction

Young women with breast cancer aged <40 years old (YWBC) are a vulnerable group who in addition to diagnosis and treatment, face many psychosocial challenges related to career, fertility, parenting, finances, body image and more.^1,2 Post treatment effects such as early menopausal symptoms and post surgical pain, as well as depression and anxiety may persist long after treatment is completed, with negative effects on quality of life.³ Additionally, YWBC typically have worse treatment outcomes than their older counterparts, in part because they often have more aggressive forms of the disease.^4,5

Given these challenges and because breast cancer diagnoses are more commonly seen among older patients, YWBC may be considered a unique population with higher information and support needs.⁶ However, YWBC report having unmet needs following diagnosis.⁷ Support via family and friends may be non-existent, or may wane once treatment is completed.⁸ Furthermore, YWBC are unlikely to know peers who are similarly diagnosed and information about breast cancer tends to target older women.

Among the general population, research shows that the internet, including diverse forms of social media (SM) have become important ways patients discover and share health information.^9,10 Most adults search the internet for health-related information,¹¹ and women and youth are the highest users.^12–14 In health care, SM use is most commonly driven by a desire to exchange information and provide support.¹⁵ Benefits of health-related SM use include: better understanding of treatment pathways,¹⁶ support for treatment decision making,¹⁷ increased satisfaction with treatment,¹⁸ and improvements in social^19,20 and psychological outcomes,²¹ including reduced anxiety.¹⁶ However, these benefits are balanced by drawbacks²² such as privacy concerns,²³ dubious information quality,^20,24 and sharing of inaccurate information.²⁵

Most of what we know about how patients use and benefit from SM comes from opportunistic studies analysing content from web-based communities and online support groups,^21,23,24 or intervention studies aimed at increasing education or providing lifestyle support via online engagement.^23,25 Data from additional sources is needed to gain a deeper understanding of cancer survivors' experience of SM including motivations for its use.²³ Furthermore, with limited exceptions,¹ most of this research has focused on adult and mixed patient populations.²³ The support needs of younger adults are unique and services should be tailored to these.²⁶ Given variable patterns and purpose of SM use by age, gender,²⁷ and patient population, research is needed to determine whether existing platforms are meeting the support needs of different patient groups, and how we may improve functioning and content of online supports. In particular, research on avid SM users and vulnerable patient populations such as YWBC is needed, as SM may provide a platform for accessing support for populations with complex psychosocial needs.

This study aimed to address gaps in the literature by using qualitative methods, to explore YWBC's perceptions of what they want versus what they get in the way of online and SM supports. Specifically, we asked YWBC about their health-related SM use, as well as use of online supports more generally, including motivations for their use, their benefits and drawbacks, and YWBC's perceptions of ideal online support.

Methods

Research design & ethics

Thematic analysis²⁸ was used to analyse qualitative data collected via semi-structured interviews. This study received ethics approval from Trillium Health Centre and Sunnybrook Health Sciences Centre in Toronto, Canada.

Sample and recruitment

The purposive sample included English-speaking females aged 18–40 who were treated for non-metastatic breast cancer and used SM. Health care practitioners from two Toronto-based hospitals assisted with recruitment by asking eligible women from their clinics if they were interested in participating. Recruitment continued until the researchers had deemed data sufficient to address the research questions, and thematic saturation was reached.²⁹ Thirteen female breast cancer patients completed audio-recorded interviews from the 18 participants approached for the study (76%). Reasons for decline were not recorded by oncologists.

Interview schedule

The semi-structured interview addressed concerns that YWBC face, patterns of SM use (i.e., type of media, frequency), motivations for SM use, benefits and drawbacks of SM for YWBC, and visions for ideal information/support platforms for YWBC. Similar questions addressed general online health-related information seeking behaviour.

Procedure

Research assistants (C.C. and S.S.) contacted consenting participants 1-week following clinic to arrange interviews, which were conducted primarily over the telephone and averaged 30 minutes. Audio-recordings were verified and transcribed.

Data analysis

Two authors (A.C. & B.S.) conducted thematic content analysis.³⁰ AC read all data and created a coding structure using NVivo 11.^® A.C. then coded the data against this structure, which was modified/re-organised as part of analysis. To limit bias and to support trustworthiness of the analysis, a second researcher (B.S.) read and coded all interviews and noted any areas of disagreement with the initial coding structure. These were discussed and the coding structure was modified as necessary. Coding continued until all data could be categorised.

Results

Participants

Participants averaged 35.5 years old at the time of interview (range = 30–40 years), and were diagnosed at an average age of 33.3 years (range = 26–40). Three were in active treatment with radiation or chemotherapy and the remaining were post-treatment.

Key interview themes and exemplary quotes are presented in Tables 1 and 2 respectively.

Table 1.

Information Seeking and Social Media Use by Young Women with Breast Cancer: Key Interview Themes

Research area	Key theme	Subthemes (N = 13)
Concerns facing YWBC		Other responsibilities: family members; career/work; school; moving; caring for others; busy (n = 9)
		Treatment: effectiveness; side effects (n = 8)
		Survivorship: survival; outcomes/prognosis; the future (n = 7)
		Recurrence/cancer spread (n = 6)
		Parenting: talking to kids about cancer/treatment; breastfeeding; fertility (n = 6)
		Diagnosis: being diagnosed/shock; impact on life [i.e., surgery, children] (n = 4)
		Wellbeing: depression; healthy lifestyle; experiential concerns [i.e., how it will feel] (n = 3)
		Relationships: social life; relationships (n = 3)
		Self-image: body image; confidence; sexuality (n = 2)
General information & support seeking	Information sources	Health care practitioners: doctors; nurses (n = 13)
		Google (n = 10)
		Peers/family (n = 10)
		NGO support: Wellspring; Cancer Society; Canadian Breast Cancer Foundation; Gilda's Club; Power of Hope; Nanny Angel (n = 7)
		Online resources: Rethink Breast Cancer; Chemocare; Sloan Kettering (n = 7)
		Hospital-based support: programs; group meetings (n = 7)
		Print materials: hospital leaflets; library books (n = 5)
		Allied health: social worker; psychologist; child life specialist (n = 4)
		Social media: discussion boards/forums; blogs; CaringBridge; BreastCancer.org (n = 4)
		Complementary health: naturopath (n = 3)
	Type of information and support sought/purpose of seeking	Information: disease; treatment; statistics; about doctors; prepare for doctor visit; increase awareness; practical tips [wigs, wound management, meals] (n = 10)
		Read about others: experiences; feelings; outcomes (n = 6)
		Resources available: practical; emotional; informational (n = 6)
		Get support: peer support; reassurance (n = 6)
		Planning: for future; childcare (n = 3)
		Information sharing: share experience with others; outlet (n = 2)
	Challenges with online information & support seeking	Quality: information veracity; quality (n = 8)
		Information missing: life after treatment; mental/emotional health; hair loss; the whole journey/clear next steps; screening at an earlier age; local information; post-op pictures; sexuality; women with kids; younger women [i.e., age & stage of life, pictures on sites] (n = 8)
		Too much information: sifting through; time consuming; overwhelming (n = 6)
		Anxiety provoking: unnecessary alarm (n = 5)
		Too busy (n = 2)
		Not local (n = 2)
		Advertising (n = 1)
Social media use	Type of social media used	Facebook (n = 13)
		Instagram (n = 5)
		Blogs: own and others' (n = 3)
		Discussion boards (n = 3)
		Pintrest (n = 2)
		YouTube (n = 2)
		Twitter (n = 1)
	Pattern of social media use	Type of user: observer and poster; observer only; avoider; compelled to use; embarrassed to post/vulnerable/in denial (n = 12)
		Changing use: change in typical use over time/course of treatment [increased, decrease, disengaged] (n = 9)
		Other initiated: encouraged by others/posted by others [sending links; fundraising] (n = 2)
	Motivation for social media use	Share information: for updating large groups of family/friends; report progress/status/experience; share news firsthand (n = 8)
		Obtain information: treatment; practical supports/resources; others' experiences (n = 4)
		Support others: to encourage/inspire/support others (for benefit) (n = 3)
		Obtain support: financial and emotional support (n = 2)
		Private outlet: can disclose anonymously (n = 2)
		Documentation: document journey (n = 1)
	Benefits of social media use	Peer support: shared experiences/learning from similar others/own age; mirrored experience; walk through another's journey (n = 12)
		Emotional support: feel not alone; get reassurance; count blessings (n = 11)
		Ease of use/convenience: connect/discuss when you want to; easy to connect; easy to disseminate information; connect even if unwell; don't have to wait for appointment (n = 9)
		Community: connect with diverse people; globally; sense of community; create own network/new friendships; snowballing support (n = 7)
		Address needs: signal needs; get information; fundraise (n = 4)
		Provide support: help others; raise awareness (n = 3)
		Therapeutic: a release/outlet; self-expression; therapeutic writing (n = 3)
		Anonymous: can remain anonymous (n = 3)
	Challenges of social media use	Lack of privacy: too public; everyone knows your business; posts will always be out there; sharing with people outside of close friends (n = 12)
		Quality: unknown information source [who's on the other end?]; critical appraisal/discerning what's true/veracity of information; get wrong information/advice; one-sided information (n = 11)
		Anxiety provoking/depressing: overwhelm; bad news; others are better off; seeing similar others with poor prognosis/outcomes (n = 8)
		Too much information: irrelevant/idiosyncratic; time consuming (n = 5)
		Unsolicited advice: support from people you don't know; swayed by others' decisions (n = 4)
		Hard to move on: don't want to identify with diagnosis/denial; trying to move on from cancer diagnosis (n = 3)
		Not local (n = 1)
	Coping with social media	Manage information exposure: getting a trusted other to search information; advised not to seek information online; pace information seeking; get extra information/prepare self with information (n = 10)
		Regulate social media use: quit posting/keep information private; avoid social media; delay disclosure of diagnosis (n = 7)
		Check veracity: critical appraisal; verify with medical team; independent research/seek out research; look for reputable sites (n = 6)

YWBC, Young women with breast cancer.

Table 2.

Exemplary Quotes

Key theme	Exemplary quotes (Source)
YWBC Concerns	…busy. I've got more things to do now, like going to doctors' appointments, you know, and then if I'm not doing chemo then I have to rest and, you know, I have kids too, so I have to take care of them. So yeah… my time has changed. (P2)
YWBC Concerns	I need to preserve my eggs just in case I can never do naturally. I have to have that backup plan in place because a future without kids, for me, is like a death sentence.” So I was like, “Okay, this is what I have to do first before I start chemo. (P3)
Information sources	Like, I would just go to, like, the search engine and punch in something about, you know, like just randomize, and then see what came up. Like, if it was like some question about radiation I would just, like, put that in, or like… you know? (P1)
Information sources	Well, the Internet in general, and social media, yeah. But just searching, you know, Google–and they always say don't do that–but I must admit that was a way that I was a able to learn more about breast cancer and young women with breast cancer …but also through Facebook as well. (P4)
Type of information and support sought/purpose of seeking	Well, it was all new to me so it was trying to learn more about the disease itself …the impact on young women … am I going to be okay? How am I going to get through this? What sort of resources are out there for me? So it allowed me to be able to see and make sure that I'm sort of not alone in the process, that there have been other people around my age that have been through it before. (P4)
Type of information and support sought/purpose of seeking	I needed… to talk to people in a similar situation and, you know, meet people. (P13)
Challenges with online information & support seeking	I did have to dig more on the Internet to find stuff… that was sort of looking at someone at my age and stage of life …I'm in the middle of my career and, like, I have young kids, and like… so there was sort of a lot more aimed at … like, post-menopausal… late 40 s/early 50 s, and so it was challenging on the Internet …(P3)
	But then I came across… again it was more information, and someone had just kind of put a blurb, there's a paragraph on the website that it said something about young people and the high risk that we have of reoccurrence of cancer … and that freaked me out … I was sort of panicking … it was like a sentence on a page that it wasn't even meant to be the focus of that page, and I thought, “Here's this sentence that do they know how powerful and strong it is just reading it makes you kind of go into a tailspin. (P12)
	Like, you couldn't find anything on talking to your kids about having breast cancer, or talking to your kids about I'm going to be bald, or I'm going to lose a breast…(P13)
Pattern of social media use	During my diagnosis stage, I stopped posting anything and everything for pretty-much almost a year or so, like, until I had passed through my chemo. I hadn't posted not one picture. Normally I do … but I didn't post anything because I didn't want anyone on Facebook to know what I was going through besides the people that knew me personally. (P8)
Motivation for social media use	I know with Facebook that was sort of my first way to let people know that I had been diagnosed with breast cancer, which was a huge, huge step for me. (P4)
Motivation for social media use	I have family overseas, and instead of keep phoning them back and texting back and e-mailing back, like, a hundred people–because I just didn't have the energy–I would just post something and they would all look and comment, and that was just easier and more convenient. (P9)
Benefits of social media use	Yeah, I was interested in people … I mean, breast cancer, it's a long road, right? … and it just it feels like you'll never get to the end of it. And there was a few people …they would have sort of YouTube videos, blogging the stage of their reconstruction and stuff, and you would see from the day they were diagnosed to the end and it's like, “Wow,” you know, “there's a light at the end of the tunnel,” kind of thing. (P13)
Benefits of social media use	It's nice being able to connect, even when you're not feeling good, with an [online] support group, or when maybe because of risk of infection you can't go out… And also you're getting a larger pool of people who aren't necessarily in your geographic zone but who might have a very similar cancer to yours … [P4]
Challenges of social media use	It's hard to separate the signal from noise on social media on any topic. So health stuff, because there's just so much… you can just go down a rat hole and get yourself very upset and/or, you know, get not-great information that seems credible if … lots of people have kind of chimed in on it. (P3)
Challenges of social media use	Well, there are times now that I kind of regret posting all my stuff, because it's so public. I mean, even though there's privacy settings it is still kind of public, and everybody kind of knows your info … it it's always going to be a reminder. And … people that didn't know me during this time look back and see that I'm going to have to explain it to them, right? (P6)
Coping with social media	So I tried to take it one step at a time. So for me it was, “Okay, what's chemo going to be like? What are these drugs that I'm going to be on for that going to look like? What are the side-effects?” to try and just really be focused questions so that I didn't find myself too overwhelmed. (P3)
	I guess I didn't want people to pity me or feel sorry for me, so I just wanted to go through it, and then I was like, you know, once I sort of pass it and I survive it, that's when I'll post stuff. And I still, at that point in time, didn't really feel like I needed to. (P8)
	I don't always believe everything that I read, but if I see something that I do question then I would just really want to take it to my medical team as opposed to hoping to find the correct answer on-line. (P4)
Ideal site	… maybe a platform where, you know, people that are going through treatment can share their experiences, and so then you know that … what you're experiencing is not that different than somebody else out there in, you know, in the world. (P9)
	Videos would be cool … links to other websites and other blogs; a live chat would be cool; and e-mail obviously, like a contact section. I want to say a list of resources … it would have maybe a message board might be cool. (P12)
	I think that you need a combination of good advice plus sharing of stories and information and statistics, whatnot, to get through it …(P8)
	So if you did have questions for a doctor and you wanted to ask some specific questions I think that there should be some sort of privacy, it shouldn't just be open to everyone. (P8)
	I would want a moderator… there's a lot of woo out there around, you know, this magical food will help you cure your cancer, or this… you know? So I think I definitely want something or someone who is sort of able to try to sort of say…“This is what the science says, this is what is actually…” like, you know, bounded in reality as opposed to wishful thinking. (P3)
	I think probably, like, easy-to-use… or, easy-to-find layout is probably, you know, the most important thing, because otherwise you're just trying to scroll through information that may or may not be relevant to you, and trying to then collect it all and put it into something that has meaning for you …obviously the accuracy of the information is important too…(P11)

YWBC concerns

Participants were primarily concerned with treatment, its effectiveness and side effects. Other concerns related to survivorship and prognosis including the possibility of recurrence and metastases, and were balanced against worries such as parenting, work, and finances.

Motivations for online information-seeking/SM use

Online information/support seeking was driven predominantly by the desires to address concerns and to connect with similar others. Information searching was often described as a process of discovery, as participants were unsure of what resources they were looking for. They tended to stumble onto sites with applicable information and interactive components. Interestingly, many participants were instructed by health care practitioners to avoid online information, which might be of questionable quality or not targeted to a patient's unique diagnosis.

There was overlap between participants' primary motivations for online information seeking and SM use. For example, participants discussed sharing information with others and obtaining support from or reading about the experiences of similar others/peers. However, the reasons for SM use included more themes related to dynamic interaction as opposed to uni-directional information seeking. Participants also saw SM as a way to document their journey, as well as a place to support others.

Information & support seeking

Information from health practitioners and family/friends were signalled as the primary sources of information/support followed by non-governmental organizations, allied health, and print materials. SM and online information did not top the list of supports, partly because participants do not know what supports are available. Most participants found online information/SM support through a “Google” search.

Patterns of SM use

Participants reported using many SM channels for cancer-related support and information, but Facebook, including closed groups related to cancer, predominated. Most participants used more than one channel concurrently (i.e., Facebook, Instagram, or Blogs).

Participants also reported different styles of SM use—some were mostly observers and others avid posters, but patterns of use were variable over time with no identifiable patterns across participants. For some, diagnosis led to a short-term reduction in SM use as participants wanted to contain input from and limit disclosure to others. For others, SM was an opportunity to openly share the diagnosis and subsequent treatment journey with all friends and followers. Open sharing of information reduced the burden of trickling information one disclosure at a time, as well as the risk of others sharing the news on the participant's behalf. Some who used SM specifically for support with breast cancer reported a general disengagement from SM as a way of avoiding reminders of the disease.

Benefits of SM use

The main benefits of SM use from most to least common were: peer support, ease of use, community, addressing needs, providing support, and a therapeutic and anonymous outlet. For the majority, SM provided a forum to connect with other YWBC to share similar experiences, concerns, information, and hopes. Shared experiences contributed to a sense of community extending beyond local boundaries. Given options for asynchronous messaging and global connections, some participants reported the benefit of being able to connect with others any day/time. Being able to provide support for others was another important benefit from SM and contributed to finding meaning from the cancer experience.

Concerns with information seeking & SM use

Participants spoke about concerns with online information and SM interchangeably. Primary concerns were with the quality of information including its veracity, its lack of specificity to their diagnosis and the challenges of sifting through masses of information. The sheer volume of information was overwhelming. Other concerns related to a lack of information for their age-group. Participants also reported stumbling on more (negative) information than intended, which contributed to anxiety and/or not being able to find the right information.

Coping with SM/online information

Many participants talked about strategies for managing the challenges of online information/SM use, which predominately included limiting information exposure. Some decided not to use the Internet after initial searches led to distressing information. Others engaged friends/family to research and read about their condition as a way of avoiding upsetting material. To avoid being overwhelmed, some participants reported searching for information in a “step-by-step” way along the journey as opposed to researching everything at once.

The second most common strategy was to regulate SM use, which included decreasing the amount of use, limiting disclosure of health-related information online, or avoiding SM use altogether. Finally, participants described checking the veracity of information by verifying information with their medical teams or critically appraising the information and source.

An ideal online support

Thinking about an ideal online support for YWBC, participants most commonly recommended the importance of connection to peers, followed by a site with multi-media channels, credibility, holistic information, connection to other credible sites/resources, functional, attractive and secure features, and inspirational messaging (Fig. 1).

FIG. 1.

Components of an ideal online support for young women with breast cancer. Color images are available online.

Discussion

Our research extends previous studies by directly engaging purportedly high users of online health related information (young women) about their perceptions of supports available for YWBC. Furthermore, the research extends understanding of the motivations behind SM use,^23,31 which were primarily to connect with peers and to complement/bolster more traditional health care supports.³² These supportive functions of SM are important for patients like YWBC who have an uncommon diagnosis for their age-group and who may be at risk of feeling isolated.³³

Our research also elucidates how patients search information online. Participants reported searching haphazardly and cherry-picking information from different sources in an attempt to fill their personality, psychosocial and information needs, including the amount and kind of information sought. As in other research,²⁰ we found that participant's experienced challenges in online information seeking. However, our research also revealed participants' use of coping strategies such as information management to regulate exposure to and negative effects from SM/Internet use. Health practitioners may consider supporting these and other natural coping strategies and reconsider blanket advice to avoid online searching. Educating patients about smart searching and credible sites^13,25 will help them weed out unhelpful sites while linking them with their benefits.

Participant's reports of coping through avoidance also has implications regarding the way online support and information are presented. There are individual differences in the amount and kind of information that patients want.³⁴ This knowledge should be applied when building online supports, so that information is clearly marked and channelled, and patients can choose whether to explore anxiety provoking topics (e.g., mortality risk among YWBC). Additionally, there are individual differences in literacy levels that affect comprehension of information presented. SM and other online supports can help overcome these challenges through platforms such as video-based information.³⁵ However, principles of health literacy should be used when designing supports to improve their accessibility by a wide audience.^36,37 Appropriate design combined with improved patient education about utilizing credible sites may lead to increased satisfaction with supports and improved patient outcomes. More research is needed in the development and testing of supports grounded in the realities of online platforms.^38,39

Unfortunately, our research shows that there are gaps in online information and resources for YWBC, suggesting that there is room for providers and developers to build sites that cater to the information and support needs of YWBC. Our participants highlighted many elements of an ideal online support for YWBC. Their collective vision emphasized an interactive, multifunctional, credible, patient-directed but moderated site with links to relevant resources and consolidated information specific to their concerns. A one-stop support hub that is updated regularly may help to tip the balance toward the benefits of online support and SM use by removing challenges such as information overload.

Limitations

Despite a relatively small sample, we were able to collect rich data, conduct in-depth analysis and observed informational redundancy, while addressing our research questions. However, a larger sample and more data on participant demographics would have enabled analysing results for different subgroups of the YWBC population. It may be that women of different ethnicities, age groups or locations need and want different supports than the group of women we interviewed. In spite of this limitation, our findings provide a solid base for future work aimed at developing and piloting ideal supports for YWBC.

Future Research & Conclusions

YWBC are a particularly vulnerable population who face many psychosocial challenges alongside cancer diagnosis and treatment.¹ Our research indicates that although YWBC experience benefits from online supports, particularly in relation to linking with peers with similar experiences, no singular online resource or SM site fully addresses their concerns and support needs. Modifying/developing existing supports to include a type of one stop support hub where patients can access and link to multi-modal, moderated and personalized supports may help to address a gap in this increasingly prevalent adjunct to health care. A first step in this process would be to conduct a detailed stocktake of existing supports and measure them against ideal elements outlined by our participants.

In addition to examining online supports including SM as a stage for intervention in education, health behaviour change,⁴⁰ and clinical outcomes,²⁵ future research should examine the function and form of the media itself and whether these factors have an effect on outcomes such as patients' perceptions of connectedness, satisfaction with support, engagement in care, health behaviour change, and knowledge of disease and treatment. Research might also examine interventions that teach YWBC how to limit the negative aspects of SM and online supports. By optimizing the form and function of online sites and tailoring their content to the unique needs of different patient populations, we may be able to optimize patient satisfaction with supports, and ultimately patient outcomes.

Footnotes

Acknowledgments

We would like to thank the women who participated in this study, Corrine Daly for her assistance with ethics, and Drs. Ellen Warner and Jeffrey Myers for their support with participant recruitment.

This research was funded by the Canadian Institute of Health Research & The Canadian Breast Cancer Foundation (#01305-000).

Author Disclosure Statement

The authors have no conflicts of interest to declare. This is original research.

References

Perales

M-A

, Drake

, Pemmaraju

, Wood

. Social Media and the Adolescent and Young Adult (AYA) Patient with Cancer. Curr Hematol Malig Rep. 2016; 11(6):449–55.

Thewes

, Butow

, Girgis

, Pendlebury

. The psychosocial needs of breast cancer survivors; A qualitative study of the shared and unique needs of younger versus older survivors. Psychooncology. 2004; 13(3):177–89.

Howard-Anderson

, Ganz

, Bower

, Stanton

. Quality of life, fertility concerns, and behavioral health outcomes in younger breast cancer survivors: a systematic review. J Natl Cancer Inst. 2012; 104(5):386–405.

Assi

, Khoury

, Dbouk

, et al. Epidemiology and prognosis of breast cancer in young women. J Thorac Dis. 2013; 5 Suppl 1:S2–S8.

Narod

. Breast cancer in young women. Nat Rev Clin Oncol. 2012; 9:460.

Ahmad

, Fergus

, McCarthy

. Psychosocial issues experienced by young women with breast cancer: the minority group with the majority of need. Curr Opin Support Palliat Care. 2015; 9(3):271–8.

Burris

, Armeson

, Sterba

. A closer look at unmet needs at the end of primary treatment for breast cancer: a longitudinal pilot study. Behav Med. 2015; 41(2):69–76.

Gould

, Grassau

, Manthorne

, et al. ‘Nothing fit me’: nationwide consultations with young women with breast cancer. Health Expect. 2006; 9(2):158–73.

Grajales Iii

, Sheps

, Ho

, et al. Social Media: a Review and Tutorial of Applications in Medicine and Health Care. J Med Internet Res. 2014; 16(2):e13.

10.

Kaplan

, Haenlein

. Users of the world, unite! The challenges and opportunities of Social Media. Bus Horiz. 2010; 53(1):59–68.

11.

Thackeray

, Crookston

, West

. Correlates of Health-Related Social Media Use Among Adults. J Med Internet Res. 2013; 15(1):e21.

12.

Brenner

A. 72% of Online Adults are Social Networking Site Users 2013. Accessed September 4, 2018 from: http://www.pewinternet.org/files/old-media/Files/Reports/2013/PIP_Social_networking_sites_update_PDF.pdf

13.

Walton

, Albrecht

, Lux

, Santacroce

. Social Media: support for survivors and young adults with cancer. Clin J Oncol Nurs. 2017; 21(5):537–40.

14.

Smith

, Kirch

, Clark

, et al. Internet and social media use by patients in a comprehensive cancer center. J Clin Oncol. 2011; 29(15_,suppl):e19594-e.

15.

Kuang-Yuan

, Chengalur-Smith

, Weijia

. Not Just for Support: companionship Activities in Healthcare Virtual Support Communities. Commun Assoc Inf Syst. 2014; 34:561–94.

16.

Attai

, Cowher

, Al-Hamadani

, et al. Twitter Social Media is an Effective Tool for Breast Cancer Patient Education and Support: patient-Reported Outcomes by Survey. J Med Internet Res. 2015; 17(7):e188.

17.

Chung

, Kim

. Blogging activity among cancer patients and their companions: uses, gratifications, and predictors of outcomes. J Am Soc Inf Sci Technol. 2008; 59(2):297–306.

18.

Wallner

, Martinez

, Li

, et al. Use of online communication by patients with newly diagnosed breast cancer during the treatment decision process. JAMA Oncol. 2016; 2(12):1654–6.

19.

Koskan

, Klasko

, Davis

, et al. Use and Taxonomy of Social Media in Cancer-Related Research: a Systematic Review. Am J Public Health. 2014; 104(7):e20–e37.

20.

Smailhodzic

, Hooijsma

, Boonstra

, Langley

. Social media use in healthcare: a systematic review of effects on patients and on their relationship with healthcare professionals. BMC Health Serv Res. 2016; 16(1):442.

21.

Sugawara

, Narimatsu

, Hozawa

, et al. Cancer patients on Twitter: a novel patient community on social media. BMC Res Notes. 2012; 5(1):699.

22.

Clark

, Algoe

, Green

. Social network sites and well-being: the role of social connection. Curr Dir Psychol Sci. 2017; 27(1):32–7.

23.

Falisi

, Wiseman

, Gaysynsky

, et al. Social media for breast cancer survivors: a literature review. J Cancer Surviv. 2017; 11(6):808–21.

24.

Abramson

, Keefe

, Chou

W-YS

. Communicating About Cancer Through Facebook: a Qualitative Analysis of a Breast Cancer Awareness Page. J Health Commun. 2015; 20(2):237–43.

25.

Han

, Lee

, Demiris

. Interventions using social media for cancer prevention and management: a systematic review. Cancer Nurs. 2018; 41(6):E19–E31.

26.

Tsangaris

, Johnson

, Taylor

, et al. Identifying the supportive care needs of adolescent and young adult survivors of cancer: a qualitative analysis and systematic literature review. Support Care Cancer. 2014; 22(4):947–59.

27.

Powell

, Inglis

, Ronnie

, Large

. The characteristics and motivations of online health information seekers: cross-sectional survey and qualitative interview study. J Med Internet Res. 2011; 13(1):e20.

28.

Braun

, Clarke

. Using thematic analysis in psychology. Qual Res Psychol. 2006; 3(2):77–101.

29.

Sandelowski

. Sample size in qualitative research. Res Nurs Health. 1995; 18(2):179–83.

30.

Hsieh

H-F

, Shannon

. Three Approaches to Qualitative Content Analysis. Qual Health Res. 2005; 15(9):1277–88.

31.

Antheunis

, Tates

, Nieboer

. Patients' and health professionals' use of social media in health care: motives, barriers and expectations. Patient Educ Couns. 2013; 92(3):426–31.

32.

Rupert

, Moultrie

, Read

, et al. Perceived healthcare provider reactions to patient and caregiver use of online health communities. Patient Educ Couns. 2014; 96(3):320–6.

33.

Breuer

, Sender

, Daneck

, et al. How do young adults with cancer perceive social support? A qualitative study. J Psychosoc Oncol. 2017; 35(3):292–308.

34.

Zhang

. The Effects of Preference for Information on Consumers' Online Health Information Search Behavior. J Med Internet Res. 2013; 15(11):e234.

35.

Adams

. Revisiting the online health information reliability debate in the wake of “web 2.0”: an inter-disciplinary literature and website review. Int J Med Informatics. 2010; 79(6):391–400.

36.

Hou

W-H

, Huang

Y-J

, Lee

, et al. Validation of the integrated model of health literacy in patients with breast cancer. Cancer Nurs. 2018; 41(6):498–505.

37.

Sørensen

, Van den Broucke

, Fullam

, et al. Health literacy and public health: a systematic review and integration of definitions and models. BMC Public Health. 2012; 12(1):80.

38.

Merolli

, Gray

, Martin-Sanchez

. Health outcomes and related effects of using social media in chronic disease management: a literature review and analysis of affordances. J Biomed Informatics. 2013; 46(6):957–69.

39.

McAlpine

, Joubert

, Martin-Sanchez

, et al. A systematic review of types and efficacy of online interventions for cancer patients. Patient Educ Couns. 2015; 98(3):283–95.

40.

Vraga

, Stefanidis

, Lamprianidis

, et al. Cancer and social media: a comparison of traffic about breast cancer, prostate cancer, and other reproductive cancers on twitter and instagram. J Health Commun. 2018; 23(2):181–9.