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 social19,20 and psychological outcomes, 21 including reduced anxiety. 16 However, these benefits are balanced by drawbacks 22 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 analysis 28 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.
Information Seeking and Social Media Use by Young Women with Breast Cancer: Key Interview Themes
YWBC, Young women with breast cancer.
Exemplary Quotes
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).

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 sites13,25 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.
