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J Adolesc Young Adult Oncol. October 2022; 11(5): 478–485.
Published online 2022 Oct 14. doi:10.1089/jayao.2021.0113
PMCID: PMC11071103
PMID: 34882036
Christabel K. Cheung, PhD, MSW,
1 Monica G. Norlander, MPH, MLIS, MA,2 Adriana N. Vest, MD, PhD,3 Bria N. Thomas,4 and Bradley J. Zebrack, PhD, MSW, MPH5
Author information Copyright and License information PMC Disclaimer
Abstract
Purpose:
The purpose of this study was to expand upon findings from a prior Delphi study of adolescent and young adults' (AYAs') preferences for cancer resources. Utilizing an embodied approach, this study intended to elucidate a deeper and nuanced understanding of the expressed benefits and risks of engaging in cancer-related online interactions.
Methods:
Using Gale et al.'s framework method for qualitative, multidisciplinary health research and Thanem and Knights's embodied research methods for the social sciences, an investigative team of embodied researchers (AYA cancer patients turned researchers) conducted semistructured in-depth interviews with AYA cancer patients (n = 10) diagnosed between ages 15 and 39 years. To generate themes, researchers identified commonalities and differences within the qualitative data, and indexed codes according to the agreed analytic framework. Furthermore, by fully engaging with personal reflexivity, bracketing, and analytic memos across data collection and analysis, the investigative team elucidated benefits and risks of embodied research.
Results:
Findings impart evidence on AYAs' needs for internet-based content at the time of cancer diagnosis, use of the internet to fulfill cancer-related needs, perception of gaps in online cancer resources, and advice to other AYA cancer patients accessing internet-based information and support. Content analysis of interview data on participants' descriptions of personal engagement with the internet revealed beneficial themes of empowerment and harmful themes of fear-inducing consequences.
Conclusions:
In our rapidly evolving context of postpandemic internet reliance, developers of online cancer content should prioritize and respond to the nuanced vulnerabilities of AYAs. Future research must include socioeconomically disadvantaged participants to better understand practical challenges and promote health equity.
Keywords: internet resource use, experiences, social media, qualitative, embodied research
Introduction
When the coronavirus disease 2019 (COVID-19) pandemic unfurled its rapid surge across the United States in March 2020, the American health care system met its fury with accelerated implementation of system-wide telemedicine.1,2 Despite long-standing health insurance restrictions on the use of digital technologies to deliver health care, the COVID-19 emergency in effect lifted long-standing policy limitations.3,4 Medicine has been forever revolutionized in favor of online innovation.5,6 Within the first few weeks of the COVID-19 outbreak, adolescent and young adult (AYA) health clinics transformed from previously zero to nearly all telehealth visits.7,8
Despite the usefulness of social media and internet resources during the COVID-19 pandemic, social media platforms—such as Twitter, Instagram, YouTube, Reddit, and Gab—contributed to an infodemic of fast-spreading misleading and fabricated content.9,10 Likewise, Johnson et al.'s review of popular social media articles on cancer found 30.5% containing misinformation.11
The visual stereotype of AYAs may be that of an iGeneration of digital natives12—born with fast-moving fingers on mobile devices, who swipe and scroll in between carefree posts and selfies. For AYAs, internet-based cancer content ranges along a vast spectrum of values—from anxiety-provoking clickbait to posts that trigger the “pain of no longer fitting in” and/or hashtags that lead to lifelong friendships.13,14
The majority of AYA cancer patients can readily access internet resources throughout the cancer care continuum.15 It is known that information sourced from the internet plays a factor in AYA cancer patients' decision-making processes regarding their treatment options and self-management,16,17 social support from patient peers,18–20 and access to post-treatment behavioral interventions.21–24 Additionally, patient-generated social media content, networks, and activity have demonstrated utility in post-treatment monitoring of bothersome side effects.25 For example, cancer patients' YouTube video blogs (vlogs) are places where AYAs learn about diagnoses, treatments, and survivorship and connect with cancer patient peers.26
The early literature on AYAs' experiences with internet-based cancer content has focused on user preferences27–30 and improving access to AYA-targeted content sponsored by cancer care providers.31–35 In more recent years, a growing literature has examined the use of popular social media platforms, where AYAs may participate as consumers and/or creators of Internet content.18,36–38 Evidence suggests that it is easy to find patient peers through social media, but the adage that misery likes company may ring true. For example, studies revealed that negative Instagram posts associated with #Melanomasucks were more likely to receive responses37 and cancer-related tweets that expressed negative emotions and anger diffused more widely.38
Due to the established importance of normalizing cancer-related distress when conducting qualitative interviews with AYAs,39 and the instrumental role of cancer patient peers in creating such normalcy for AYAs, we employed an embodied approach. Embodied research is defined as a scientific method led by stakeholders of the investigation and aims to generate empirical evidence that could not otherwise be found due to exclusive access granted by embodiment.40–42 Embodied techniques call on researchers to reflect upon how their own embodied selves affect the research process, interact with the topics and subjects of study, and contribute to the knowledge generated.
Empirical knowledge in AYA oncology can benefit from embodied researchers in four areas: (1) improvements to all research activities through patient advisem*nt, (2) contributions to transdisciplinary knowledge through lived experiences, (3) greater fidelity to both evidence-based practice and practice-based evidence, and (4) increased responsiveness to the changing AYA sociocultural landscape.43
The purpose of this study was to expand upon findings from a prior Delphi study of AYAs' general preferences for cancer resources27 by focusing exclusively on examination of internet experiences related to cancer. To elucidate a nuanced understanding of the benefits and risks of online cancer content, an embodied research approach was utilized.
Methods
The investigative team comprised four embodied AYA cancer researchers (C.K.C., M.G.N., A.N.V., and B.J.Z.)—that is, researchers who were themselves diagnosed with cancer as AYAs. Two embodied researchers conducted semistructured in-depth interviews with AYA cancer patients (n = 10) diagnosed between ages 15 and 39 years. A third embodied researcher assisted the two interviewers with coding and affinization of qualitative data from the interviews.
Approval to conduct this research was granted by the University of California, Los Angeles, Institutional Review Board (IRB#14-001649) and the study adhered to the UCLA Office for Protection of Research Subjects guidelines for research ethics. Participants received written study information about the study purpose, procedures, potential risks and benefits, privacy and confidentiality, and their right to withdraw at any time with no consequences. Participants provided oral consent before being interviewed and were informed that interview data would be anonymized with identification codes.
Embodiment of AYA cancer
Following Thanem and Knights's42 theorization of embodied research in the social sciences, our investigative team comprised four embodied researchers who were diagnosed with cancer during their respective AYA years. To transparently incorporate the embodiment of AYA cancer into our investigative lens, our embodied research technique involved fully engaging with personal reflexivity, bracketing, and analytic memos across data collection, coding, and content analysis.42
Two embodied researchers (C.K.C. and A.N.V.) conducted semistructured interviews and opened each interview by sharing their respective personal reflexivity on AYA cancer. These prepared personal disclosures enabled researchers to develop rapport that welcomed participants to share details that may be less commonly understood outside a firsthand experience of cancer. Furthermore, upon completion of all participant interviews, embodied researchers participated in audio-recorded debriefing discussions that elicited their perceptions of benefits and risks associated with engaging in embodied research methods. Data from debriefing discussions were subsequently transcribed, coded, examined through content analysis, and summarized.
Participants and recruitment
With the goal of focusing on the benefits and risks of AYAs' cancer-related internet experiences, we used Instagram and Facebook's social media platforms to recruit interview participants (n = 10). Eligible participants were cancer patients diagnosed between ages 15 and 39 years, over 18 years old at the time of this study, no more than 5 years past their date of diagnosis, and conversant in English.
Data collection
Researchers conducted all interviews by phone, between October 2015 and May 2016. Interviews were audio recorded, transcribed, and coded using a thematic analysis approach within the Framework Method,44 a combined deductive–inductive approach to data analysis. The Framework Method deductively utilizes a semistructured interview format with predetermined questions that serve as an agreed analytic framework while creating space to inductively discover unexpected aspects of the participants' experience of the phenomena.44 Researchers asked AYA interview participants seven questions and corresponding subquestions, as shown in Table 1. At the close of each interview, the audio recordings were transcribed into Microsoft Word. Each interview lasted an average of 45–60 minutes.
Table 1.
Adolescent and Young Adult Semistructured Interview Questions
| (A) AYA patient needs |
| (1) Can you tell me briefly about what your life was like when you found out you had cancer? |
| (2) Given what was happening to you at the time, what did you need? |
| (B) Internet engagement |
| (3) Are there any things that you never found on the internet, which you wish were on the internet? |
| (4) Did you use the internet for any other reasons related to your cancer experience? |
| (C) Member/stakeholder feedback on prior study results |
| (5) In a prior study, AYA survivors ranked these top 3 barriers to AYA cancer care. What do you think about each of these priorities? |
| (i) A lack of cancer care providers specializing in AYAs (ii) A lack of connection to the AYA patient community (iii) AYAs' own lack of ability to navigate the health care system |
| (6) In a prior study, AYA cancer survivors indicated that the main purpose of internet resources should be to do the following. What do you think of these recommendations? |
| (i) Reduce feelings of loneliness (ii) Create a sense of community or belonging (iii) Provide opportunities to meet other AYA patients |
| (D) Advice for others |
| (7) If you were to advise an AYA just diagnosed with cancer, what would be the top 3 pieces of advice you would give them about getting information and support online? |
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AYA, adolescent and young adult.
Data analysis
Our analysis employed Gale et al.'s44 Framework Method for qualitative, multidisciplinary health research and Thanem and Knights'42 embodied research methods for the social sciences.42,44 Our aim was to expand upon findings from a prior study by Cheung and Zebrack27 by exclusively characterizing internet-based cancer-related interactions.
Inductive thematic analysis
Upon completion of each interview with an AYA participant, researchers listened to the audio recording at least twice. The first listen served as exposure of what was to come. After the first listen, the researcher wrote reflection memos on the most salient aspects of each interview. During the second listen, they simultaneously read through corresponding transcripts to verify the accuracy of each transcript. Data saturation was achieved when no new information was discovered from participants (n = 10) in response to questions within our prefigured analytic frame.
The first phase of content analysis involved inductively coding key words to capture unique responses to each question and pulling the data together into a Microsoft Excel workbook to organize findings. The second phase of content analysis involved inductively grouping key words into clusters and themes and differentiating or combining overlapping responses. Three embodied researchers participated in the first and second phases of the analysis to strengthen inter-rater reliability. Each researcher independently coded each interview transcript; then, results were discussed among the research team to arrive at an agreement on codes and clusters to capture rich and thick textual responses across all interviews.
Deductive thematic analysis
The third phase of content analysis involved the three embodied researchers working jointly to summarize codes and clusters into emergent themes that provide overarching illustrative responses to the seven predetermined questions. As a result, emergent primary themes were deductively generated by researchers identifying commonalities and differences within the qualitative data, and indexing codes according to the agreed analytic framework.
Results
Participant characteristics
Table 2 presents sociodemographics and characteristics of AYA cancer patients in this study. The mean age of participants (n = 10) was 24.8 years (range 19–36 years). Seven identified as female, and three identified as male. Mean age at diagnosis was 21.4 years (range 15–29 years). Two participants were on active treatment at the time of the interview, and the remaining participants were off treatment ( = 1.7 years post-treatment). A variety of diagnoses were represented.
Table 2.
Participant Characteristics (n = 10)
| Gender | |
| Female | 7 (70%) |
| Male | 3 (30%) |
| Ethnicity | |
| Hispanic | 3 (30%) |
| Non-Hispanic | 7 (70%) |
| Race | |
| White | 8 (80%) |
| Black or African American | 1 (10%) |
| Asian | 1 (10%) |
| Age at diagnosis | |
| 15–25 years | 7 (70%) |
| 26–39 years | 3 (30%) |
| Diagnosesa | |
| Breast cancer | 1 (10%) |
| Hodgkin's lymphoma | 2 (20%) |
| Non-Hodgkin lymphoma | 1 (10%) |
| Acute lymphoblastic leukemia | 1 (10%) |
| Chronic myeloid leukemia | 1 (10%) |
| Osteosarcoma | 1 (10%) |
| Rhabdomyosarcoma | 1 (10%) |
| Testis cancer | 1 (10%) |
| Colon cancer | 1 (10%) |
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aTwo participants had more than 1 primary diagnosis.
Key themes and recommendations for internet experiences
We derived two themes that describe the type of cancer content that participants reported as accessed and missing from the internet: (1) psychosocial support to help cope alone or with existing friends, social groups, and new patient peers and (2) knowledge on cancer survivorship, access and use of the health care delivery system, and cancer care resources. Table 3 displays study participants' reported experiences of help and/or harm within these two themes as respective subthemes. Participants then offered a total of 11 recommendations to other AYA patients diagnosed with cancer to better support helpful experiences and warn against harm when searching online (Table 4).
Table 3.
Key Themes on Helpful and Harmful Internet Experiences Among Adolescent and Young Adult Cancer Patients
| Theme 1: Helpful cancer content accessed from the internet |
| Subtheme 1a: Psychosocial support to help cope alone or with existing friends, social groups, and new patient peers |
| Assistance with developing positive coping skills |
| Connection to cancer patient peers with similar diagnosis |
| Activities and entertainment to pass time while coping with cancer |
| Subtheme 1b: Knowledge on cancer survivorship, access and use of the health care delivery system, and cancer care resources |
| Credible patient-driven information related to specific disease, treatment side effects, and coping strategiesa |
| Scientific articles on latest cancer research innovations specific to AYAsa |
| Theme 2: Harmful cancer content accessed from the internet |
| Subtheme 2a: Psychosocial support to help cope alone or with existing friends, social groups, and new patient peers |
| Negative and/or traumatic content about personal cancer experiences |
| Sharing personalized resources such as prescription medication and medical advice |
| Subtheme 2b: Knowledge on cancer survivorship, access and use of the health care delivery system, and cancer care resources |
| Credible, but fragmented, patient-driven information related to specific disease, treatment side effects, and coping strategiesa |
| Scientific articles on latest cancer research innovations specific to AYAsa |
| Financial resources and health insurance information |
| Popular mainstream health information sites that address cancer |
| End-of-life planning resources |
| Theme 3: Cancer content missing from the internet with harmful impacts |
| Subtheme 3a: Psychosocial support to help cope alone or with existing friends, social groups, and new patient peers |
| Straightforward advice directly from patient peers with the same diagnosis |
| Connection to cancer patient peers soon after diagnosis and the larger AYA cancer community across long-term survivorship |
| Advice on reentering life with the general population |
| Ways to participate in advocacy to influence the field of oncology and cancer care delivery |
| Subtheme 3b: Knowledge on cancer survivorship, access and use of the health care delivery system, and cancer care resources |
| Accessible, reliable, and relatable information throughout the cancer continuum |
| Financial and health insurance information and detailed plain-language guidance |
| Advice on reentering life with the general population |
| Practical strategies and everyday help with professional and educational progress |
| Pain management issues and options during and after cancer treatments |
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aInternet experiences reported by study participants to be both helpful and harmful depending on their context.
Table 4.
Recommendations from and for Adolescent and Young Adult Cancer Patients on Internet Use
| Representative quotations of helpful experiences |
| “Chemotherapy is medicine; You are not dying, medicine is working.” |
| “Social media is efficient for communicating with friends and family.” |
| “Prepare your body for inevitable side effects.” |
| “Learn more about clinical trials and how to navigate clinicaltrials.gov.” |
| “Develop a plan to boost confidence and peace of mind.” |
| “Some apps are like Tinder for cancer support.” |
| “Do not wait for others to come to you.” |
| “Reaching out once can change everything.” |
| “Vent online with other patients.” |
| Representative quotations of harmful experiences |
| “Use the Internet, Google especially, in moderation.” |
| “Be careful with Google, you might overreact.” |
| “Beware of cancer cure scams and misinformation.” |
| “Find a variety of cancer patients' stories on a reputable site.” |
| “Remember that it is easy to freak yourself out.” |
| “The Internet is a double-edged sword.” |
| “Some people online want to mess with you.” |
| “Some things online will freak you out.” |
| “Statistics do not define you.” |
| “Stay away from statistics.” |
| “There is no one right way to do cancer.” |
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Cancer content accessed from the internet
Table 3 begins by displaying AYA participants' expressed helpful experiences of accessing social support and immediate information and resource needs after receiving their cancer diagnoses. All participants reported frequently going online to search for financial resources, oncology specialists, and cancer patient forums for support and advocacy through social media, email, and their health care patient portal (e.g., myChart). Most participants described experiences of both successful and failed attempts at staying away from directly searching for unofficial reports, news, figures, or data about cancer as a whole or specific to their diagnosis.
Cancer content missing from the internet with harmful impacts
All but one participant described a lack of straightforward and reliable information about their cancer diagnoses and treatments written to their level of understanding and a lack of credible information addressing their concerns about cancer survivorship as an AYA. Many participants emphasized not wanting to frighten themselves with statistics and mortality rates that they could misunderstand.
To avoid the stress of cancer-related information, several participants described periods of only using the internet for social media and staying connected to friends, family, and work and even abstaining from the internet altogether during certain periods of depressed mood. Notably, one participant described extreme distress after being unable to find help with medication costs from credible cancer resources. The participant eventually settled on questionable assistance from another cancer patient in an online support group, who willingly connected with her online and then in person to share prescription medication with her.
The majority of participants expressed that both patient-driven information (e.g., credible information on specific diagnoses, treatments, side effects, and coping strategies) and scientific articles on the latest cancer research (e.g., innovations in AYA cancer) had the potential to be experienced as either helpful or harmful depending on the context in which they were received. Several participants expressed not knowing how to ask their health care provider for more detailed information about their diagnoses, treatment schedule, and potential side effects at the start of their cancer treatments while not wanting to bother their friends and family. Several other participants spoke about the importance of how having a compassionate health care provider or patient peer explain the information given to them helped their comprehension.
Recommendations from and for AYA cancer patients
Participants imparted recommendations for other AYA cancer patients, which describe and differentiate internet experiences that were either helpful or harmful (Table 4). Helpful experiences promoted positive coping, while harmful experiences triggered negative thoughts and behaviors. For example, the majority of participants advised that social media and social networking apps were efficient ways to access cancer-specific social support while also advising other AYAs to search for a variety of cancer patients' stories online.
It is notable that in some cases, online content sponsored by credible cancer resources was perceived as negative because it was received during a physically and/or psychologically sensitive time for the patient. All participants suggested that other AYA patients should not go online to search for cancer content during hard times—regardless of whether this difficulty was directly related to their cancer and its treatments. For example, one participant directly warned other AYAs, “Be careful with Google, you might overreact.”
Discussion
Internet content is well integrated into the lives of AYAs who are exceptionally proficient at interacting online as both content consumers and creators.45 It follows that AYAs coping with the devastation of a cancer diagnosis will search, post, and interact online to express their cancer-related needs, thoughts, and emotions. The tremendous volume and variety of ways in which AYAs may interact online open up limitless possibilities for experiences that may be helpful or harmful as these young cancer patients have yet to fully develop the necessary maturity and skills to judge credibility, decipher deception, and/or cope with harmful online interactions.
The internet is a contradictory duality of being both a potential pit of despair and a potential lifeline for AYAs diagnosed with cancer.13,14,46 If risks are minimized, the internet holds great potential for promoting the well-being of AYAs. Findings from our study validate prior evidence on AYAs' distinct health care and psychosocial needs at the time of cancer diagnosis and present new qualitative data on AYAs' nuanced experiences of finding help and harm online following a cancer diagnosis.
Helpful experiences of the internet
Our findings revealed that whether online content was perceived to be helpful was determined primarily by the credibility of its source. A source, however, could be perceived as credible in one area of cancer-related concerns, but less credible in another. For example, oncologists and national cancer organizations were the most relied upon sources for survival statistics, but were considered less credible for information on side effects and psychosocial issues.
All participants expressed some degree of priority for being up to date with the latest information and statistics on their unique cancer treatments and that obtaining this knowledge would help with their mental well-being. Overwhelmingly, content generated by other cancer patients who shared similar experiences was described as being a helpful source for managing the side effects of cancer treatments and psychosocial issues, including health care costs, mental health, school/work, and relationships.
Harmful experiences of the internet
AYAs have a strong developmental need to be heard and perhaps an equally strong need for help with understanding the feedback they elicit. AYAs are both consumers and creators of online content that has the potential for harm. For example, when online searches failed to produce content that AYAs could comprehend, participants asked for help in online groups and chats with patient peers, resulting in a mix of positive and negative experiences. In some instances, stories of pain and struggle shared by patient peers induced fears and worries among participants.
This is an opportunity for developers of online platforms to create mechanisms for qualified monitoring and flagging of content that may be harmful. For example, AYAs may benefit from social workers, patient navigators, or other cancer care providers, who both specialize in serving AYAs and are equipped to direct them to legitimate help, monitor online chats, flag spurious content, and educate AYAs on how to safely engage online.
Benefits of embodied research to psychosocial inquiry
Despite increasing acknowledgment of the importance of embodied research, few social scientists actually write reflexive disclosures about their embodied selves into their research accounts.42 Our study demonstrated the feasibility of employing Thanem and Knights'42 embodied research methods in the examination of lived experiences of AYA cancer patients when engaging with internet content.42
Table 5 presents potential benefits and risks of using an embodied approach, with representative quotations that resulted from debriefing sessions with the four embodied researchers within our investigator team. The overarching theme of these self-reported data suggests that when rigorous embodied research methods are conducted, embodiment may ease the process of building rapport with interview participants, grant exclusive access to privileged or sensitive data, and/or enable the delineation of nuances in the process of reviewing and analyzing interview data.
Table 5.
Benefits and Risks of Embodied Research
| Representative quotations of benefits |
| “The research questions that we [embodied researchers] asked [in this study] are directly relevant to areas of practice [in AYA cancer care].” |
| “[Embodied researchers] have different insights, are very passionate about the subject matter, and may be better connected to the psychosocial, mental health, quality of life, and the more subjective aspects of outcomes than [researchers] who haven't experienced [a cancer diagnosis as an AYA].” |
| “[Embodied researchers had] better access to [their] patient population or [the study's] target population. [We might know] the [cancer care] system better.” |
| “We did deep interviews; we were able to build rapport with our participants in a way that I don't think would have been at all possible with a team of researchers, that was not embodied [by AYA cancer patients]. |
| “[One interview participants in this study] said, ‘I trust you because, like, you know what you're talking about; because you've been there. You had cancer.” |
| “[As an embodied researcher] I am now transitioning to changing the system from within, and I think publishing journal articles, publishing like the voice of the patient in a format that is, I guess, understandable for clinicians and actually shows the data behind how the patients are truly feeling and truly experiencing their condition.” |
| Representative quotations of risks |
| “There's a big risk for bias. You know, your personal experiences are always going to bias, always going to bias you in making hypotheses, in analyzing the data that you acquire … you may have a personal message that you want to prove. You need to be careful with that because, you know, bias is something that we as researchers really want to eliminate.” |
| “There's criticism about whether or not [embodied researchers] can be scientifically objective … perception [from the academic research community] that we're too close to the issue.” |
| “If I talk to too many patients that are angry in a given period, then I need to take a break … because it may stir up secondary traumatic stress in me, or it may just be difficult, because [embodied researchers'] professional compassion for patients naturally comes with some real empathy.” |
| “I don't know if secondary traumatic stress would be all that bad. I don't know. [Secondary traumatic stress] seems a little strong, but it could be possible.” |
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Limitations
There were limitations in our study that should be considered in the interpretation of results. First, participant interviews were conducted between October 2015 and May 2016, and the internet landscape has since seen much change. Nonetheless, our examination of helpful and harmful internet experiences still holds true and may be even more salient given expanding adoption and use of online platforms and telemedicine. Second, our sample lacked adequate socioeconomic and sociodemographic diversity to reach data saturation to indicate any possible associations with these participant characteristics. Despite the aforementioned limitations, our embodied research provides timelessly important new evidence on internet experiences among AYAs following the disruption of a cancer diagnosis.
Conclusions
The line between cancer-related internet experiences that are helpful and harmful is indeed thin—AYAs can potentially be not only easily helped but also easily harmed. In our inescapable postpandemic context of rapidly evolving telemedicine and internet reliance in AYA oncology, developers of online cancer content must incorporate the ever-changing and nuanced experiences of vulnerable AYA patients.
Future research must investigate experiences among socioeconomically disadvantaged and sociodemographically diverse participants to broaden our understanding of the practical challenges related to AYAs' internet experiences as both cancer content consumers and creators. Such findings would also help inform policies and practices aimed at galvanizing strengths and minimizing vulnerabilities in efforts to democratize cancer care and promote health equity.
Disclaimer
A summary of results was presented as part of an oral panel session, “Studying the Lived Experience of Transitioning to Adulthood in the Context of Cancer: Embodied Research in Adolescent and Young Adult Oncology,” at the Society for Social Work and Research Annual Conference on January 20, 2021.
Author Disclosure Statement
No competing financial interests exist.
Funding Information
This project was funded by Teen Cancer America.
References
1. Immune Deficiency Foundation. Telehealth access expanded in response to coronavirus [Internet]. 2020. Accessed
2. Keesara S, Jonas A, Schulman K. Covid-19 and health care's digital revolution. N Engl J Med. 2020;382(23):e82. [PubMed] [Google Scholar]
3. Making emergency supplemental appropriations for the fiscal year ending September 30, 2020, and for other purposes [Internet]. H. R. 6074. 2020. Accessed
4. U.S. Department of Health & Human Services. Notification of enforcement discretion for telehealth remote communications during the COVID-19 nationwide public health emergency [Internet]. 2021. Accessed
5. Jin MX, Kim SY, Miller LJ, et al. Telemedicine: current impact on the future. Cureus. 2020. Accessed
6. Maroongroge S, Smith B, Bloom ES, et al.. Telemedicine for radiation oncology in a post-COVID world. Int J Radiat Oncol. 2020;108(2):407–10. [PMC free article] [PubMed] [Google Scholar]
7. Barney A, Buckelew S, Mesheriakova V, Raymond-Flesch M. The COVID-19 pandemic and rapid implementation of adolescent and young adult telemedicine: challenges and opportunities for innovation. J Adolesc Health. 2020;67(2):164–71. [PMC free article] [PubMed] [Google Scholar]
8. Baum A, Kaboli PJ, Schwartz MD. Reduced in-person and increased telehealth outpatient visits during the COVID-19 pandemic. Ann Intern Med. 2021;174(1):129–31. [PMC free article] [PubMed] [Google Scholar]
9. Cinelli M, Quattrociocchi W, Galeazzi A, et al.. The COVID-19 social media infodemic. Sci Rep. 2020;10(1):16598. [PMC free article] [PubMed] [Google Scholar]
10. Zarocostas J.How to fight an infodemic. Lancet. 2020;395(10225):676. [PMC free article] [PubMed] [Google Scholar]
11. Johnson SB, Parsons M, Dorff T, et al. Cancer misinformation and harmful information on Facebook and other social media: a brief report. JNCI J Natl Cancer Inst. 2021. [Epub ahead of print];djab141. [PMC free article] [PubMed] [Google Scholar]
12. Prensky M.Digital natives, digital immigrants part 2: do they really think differently?Horiz. 2001;9(6):1–6. [Google Scholar]
13. Lazard AJ, Collins MKR, Hedrick A, et al.. Using social media for peer-to-peer cancer support: interviews with young adults with cancer. JMIR Cancer. 2021;7(3):e28234. [PMC free article] [PubMed] [Google Scholar]
14. Donovan E, Martin SR, Seidman LC, et al.. The role of social media in providing support from friends for adolescent and young adult (AYA) patients and survivors of sarcoma: perspectives of AYA, parents, and providers. J Adolesc Young Adult Oncol. 2021;27:100316. [PMC free article] [PubMed] [Google Scholar]
15. National Cancer Institute. Division of Cancer Control & Population Sciences, National Institutes of Health [Internet]. 2019. Accessed
16. Chang K, Berthelet E, Grubbs E, et al.. Websites, websites everywhere: how thyroid cancer patients use the internet. J Cancer Educ. 2020;35(6):1177–83. [PubMed] [Google Scholar]
17. Holmes MM.Why people living with and beyond cancer use the internet. Integr Cancer Ther. 2019;18:153473541982983. [PMC free article] [PubMed] [Google Scholar]
18. De Clercq E, Rost M, Gumy-Pause F, et al.. Moving beyond the friend-foe myth: a scoping review of the use of social media in adolescent and young adult oncology. J Adolesc Young Adult Oncol. 2020;9(5):561–71. [PubMed] [Google Scholar]
19. Lea S, Martins A, Bassett M, et al.. Issues experienced and support provided to adolescents and young adults at the end of active treatment for cancer: a rapid review of the literature. Eur J Cancer Care (Engl). 2018;27(6):e12972. [PubMed] [Google Scholar]
20. Moody L, Turner A, Osmond J, et al.. Web-based self-management for young cancer survivors: consideration of user requirements and barriers to implementation. J Cancer Surviv. 2015;9(2):188–200. [PMC free article] [PubMed] [Google Scholar]
21. Falzone AE, Brindis CD, Chren M-M, et al.. Teens, tweets, and tanning beds: rethinking the use of social media for skin cancer prevention. Am J Prev Med. 2017;53(3):S86–94. [PMC free article] [PubMed] [Google Scholar]
22. Mendoza JA, Baker KS, Moreno MA, et al.. A Fitbit and Facebook mHealth intervention for promoting physical activity among adolescent and young adult childhood cancer survivors: a pilot study. Pediatr Blood Cancer. 2017;64(12):e26660. [PubMed] [Google Scholar]
23. Pohlig F, Lenze U, Muhlhofer HML, et al.. IT-based psychosocial distress screening in patients with sarcoma and parental caregivers via disease-specific online social media communities. In Vivo. 2017;31(3):443–50. [PMC free article] [PubMed] [Google Scholar]
24. Valle CG, Tate DF. Engagement of young adult cancer survivors within a Facebook-based physical activity intervention. Transl Behav Med. 2017;7(4):667–79. [PMC free article] [PubMed] [Google Scholar]
25. Ping Q, Yang CC, Marshall SA, et al.. Breast cancer symptom clusters derived from social media and research study data using improved K-Medoid clustering. IEEE Trans Comput Soc Syst. 2016;3(2):63–74. [PMC free article] [PubMed] [Google Scholar]
26. Hale BJ, Gonzales AL, Richardson M. Vlogging cancer: predictors of social support in YouTube cancer vlogs. Cyberpsychology Behav Soc Netw. 2018;21(9):575–81. [PubMed] [Google Scholar]
27. Cheung CK, Zebrack B. What do adolescents and young adults want from cancer resources? insights from a Delphi panel of AYA patients. Support Care Cancer. 2017;25(1):119–26. [PubMed] [Google Scholar]
28. Donovan E, Martin SR, Seidman LC, et al.. A mobile-based mindfulness and social support program for adolescents and young adults with sarcoma: development and pilot testing. JMIR MHealth UHealth. 2019;7(3):e10921. [PMC free article] [PubMed] [Google Scholar]
29. Lathren C, Bluth K, Campo R, et al.. Young adult cancer survivors' experiences with a mindful self-compassion (MSC) video-chat intervention: a qualitative analysis. Self Identity. 2018;17(6):646–65. [PMC free article] [PubMed] [Google Scholar]
30. Sansom-Daly UM, Wakefield CE, Bryant RA, et al.. The recapture life working party. Feasibility, acceptability, and safety of the Recapture Life videoconferencing intervention for adolescent and young adult cancer survivors. Psychooncology. 2019;28(2):284–92. [PubMed] [Google Scholar]
31. Chalmers JA, Sansom-Daly UM, Patterson P, et al.. Psychosocial assessment using telehealth in adolescents and young adults with cancer: a Partially randomized patient preference pilot study. JMIR Res Protoc. 2018;7(8):e168. [PMC free article] [PubMed] [Google Scholar]
32. Grace JG, Schweers L, Anazodo A, Freyer DR. Evaluating and providing quality health information for adolescents and young adults with cancer. Pediatr Blood Cancer [Internet]. 2019. Accessed
33. Moscato EL, Miley AE, LeBlond EI, et al.. Feasibility and acceptability of an online problem-solving therapy intervention for adolescent and young adult brain tumor survivors. Clin Pract Pediatr Psychol. 2019;7(1):68–78. [Google Scholar]
34. Price J, Brunet J. Telehealth coaching for rural-living young adult cancer survivors: a protocol. Health Educ J. 2020;79(2):212–24. [Google Scholar]
35. Viola A, Panigrahi G, Devine KA. Digital interventions for adolescent and young adult cancer survivors. Curr Opin Support Palliat Care. 2020;14(1):51–9. [PubMed] [Google Scholar]
36. Aggarwal R, Hueniken K, Eng L, et al.. Health-related social media use and preferences of adolescent and young adult cancer patients for virtual programming. Support Care Cancer. 2020;28(10):4789–801. [PubMed] [Google Scholar]
37. Cho H, Silver N, Na K, et al.. Visual cancer communication on social media: an examination of content and effects of #Melanomasucks. J Med Internet Res. 2018;20(9):e10501. [PMC free article] [PubMed] [Google Scholar]
38. Wang X, Shi J, Kong H. Online health information seeking: a review and meta-analysis. Health Commun. 2021;36(10):1163–75. [PubMed] [Google Scholar]
39. Davies JP, McGill BC, Sansom-Daly UM, et al.. “This is the first time i've talked about this”: considerations when conducting qualitative research interviews with adolescents and young adults with cancer. J Adolesc Young Adult Oncol. 2020;10(5):540–548. [PubMed] [Google Scholar]
40. Chadwick R.Embodied methodologies: challenges, reflections and strategies. Qual Res. 2017;17(1):54–74. [Google Scholar]
41. Spatz B.Embodied research: a methodology. Liminalities. 2017;13(2):1–31. [Google Scholar]
42. Thanem T, Knights D. Embodied research methods. London: SAGE Publications, Ltd.; 2019. [Google Scholar]
43. Cheung CK.Young cancer patients as future leaders in the global knowledge economy. Cancer Ther Oncol Int J. 2018;10(4):68–71. [Google Scholar]
44. Gale NK, Heath G, Cameron E, et al.. Using the framework method for the analysis of qualitative data in multi-disciplinary health research. BMC Med Res Methodol. 2013;13(1):117. [PMC free article] [PubMed] [Google Scholar]
45. Eng L, Bender J, Hueniken K, et al.. Age differences in patterns and confidence of using internet and social media for cancer-care among cancer survivors. J Geriatr Oncol. 2020;11(6):1011–9. [PubMed] [Google Scholar]
46. Daniels SR, Yang C-C, Toohey SJ, Willard VW. Perspectives on social media from adolescents and young adults with cancer. J Pediatr Oncol Nurs. 2021;38(4):225–32. [PubMed] [Google Scholar]
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