Like or Dislike? Impact of Facebook on Ewing Sarcoma Treatment

Ruckenstuhl, Paul; Schippinger, Michael; Liebmann, Paul; Leithner, Andreas; Bernhardt, Gerwin A.

doi:10.2196/cancer.5367

Cited by 11 publications

(11 citation statements)

References 37 publications

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“…47,49,67 This might explain why the main focus in the reviewed literature (n = 18, among which 16 empirical and 2 theoretical articles) was on finding better methods for offering psychosocial support to AYA with cancer. [32][33][34][36][37][38]44,47,52,54,56,57,65,[67][68][69][70][71] The underutilization of psychosocial support services by AYA was of major concern and was attributed to the difficulty of engaging them in this type of care. These difficulties were partly ascribed to the many practical challenges that traditional in-person support services face (e.g., who can bring the patient to the support group; the patient's home is too far from the care center; and the patient is too ill to travel), and to a lack of availability (no face-to-face services for AYA are offered due to small patient numbers).…”

Section: Mixedmentioning

confidence: 99%

“…Professional psychosocial support online was offered through chat, email, or instant messaging, by a professional mentor. 44,68,72 In addition to ementoring, some of the reviewed empirical literature emphasized on peer support in diseasespecific (e.g., breast cancer, ovarian cancer, and Ewing sarcoma) online support groups 44,69,71 and on the importance of story-telling (e.g., use of blog or Facebook page or YouTube channel) as a form of self-therapy to cope with existential distress. 33,52,54,70 Based on their study results, two qualitative studies argued that HCPs should consider encouraging AYA to narrate their illness experience in text or in video as it can increase their self-esteem, promote psychological and physical recovery, and advance responsibility for self-care.…”

Section: Mixedmentioning

confidence: 99%

“…One of the most common cited risks (n = 9) of the use of social media by AYA cancer patients was exposure to misleading, anti-scientific, or even sensationalized cancer-related information. 18,22,38,39,43,53,54,71,73 Based on their study results, the authors of two studies 43,71 claim that some AYA feel insecure about using social media because they distrust the quality of health-related information or they are afraid of getting upset about what they find. The concern regarding the unreliability of online information was further exacerbated by two more factors.…”

Section: Mixedmentioning

confidence: 99%

“…Some empirical studies tried to circumvent this problem by collecting (de-identified) posts from publicly accessible cancer support forums for which no subscription was needed and thus no informed consent was required by institutional review boards or research ethics committees. 47,50,56,71 Others used data from research intervention tools developed and launched by the research team and asked sought informed consent from their participants who were specifically recruited (often with limited success) for research purposes. 34,45,67,68 A final consideration is the ethical complexity with regard to patient-health care provider interactions through social media.…”

mentioning

confidence: 99%

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Moving Beyond the Friend-Foe Myth: A Scoping Review of the Use of Social Media in Adolescent and Young Adult Oncology

Clercq

Rost

Gumy‐Pause³

et al. 2020

Journal of Adolescent and Young Adult Oncology

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Purpose: Adolescents and young adults (AYA) with cancer present a unique challenge to health care institutions. Their cancer diagnosis and treatment have a profound impact upon their health and well-being. Despite the various support services aimed at improving their quality of life, their needs and preferences are often underestimated or misjudged. Recent studies show that patients are empowered by the knowledge and support they receive online. Given the extensive use of social media among AYA, we aim to identify promises, challenges, and recommendations for integrating these platforms in AYA cancer care. Methodology: We systematically searched seven databases systematically: Scopus, PubMed, PsycInfo, Web of Science, CINAHL, SocINDEX, and Media. We placed no restriction on the type of methodology used in the studies. The Preferred Reporting Items for Systematic Reviews and Meta-Analyses was used to frame the research. Results: Many studies argued that health care professionals need to integrate social media in their clinical practice to engage with patients' lifeworld. Social media were considered important allies in optimizing cancer care at all levels of support, ranging from information provision, treatment adherence, diet and exercise interventions, to professional, peer, and psychosocial self-care. Lack of research on the efficacy of social media in the context of psychosocial support was a commonly cited problem. A small number of publications paid attention to the inherent risks of promoting self-care online. Conclusion: Future studies should continue to pursue empirical research on the efficacy of online psychosocial care, while not neglecting the ethical challenges of social media research.

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Section: Mixedmentioning

confidence: 99%

Section: Mixedmentioning

confidence: 99%

Section: Mixedmentioning

confidence: 99%

mentioning

confidence: 99%

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Moving Beyond the Friend-Foe Myth: A Scoping Review of the Use of Social Media in Adolescent and Young Adult Oncology

Clercq

Rost

Gumy‐Pause³

et al. 2020

Journal of Adolescent and Young Adult Oncology

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“…Use of social media has, for example, been shown to enhance relationships with health care professionals (HCPs), with people feeling empowered and better able to engage in shared decision making about their care [ 7 , 8 ]. In the case of the social media platform Facebook, it has been shown that online exchanges between patients and relatives can influence treatment decisions and emotional support in everyday life [ 9 ], though some of the factual content of the information being exchanged was deemed to be questionable from a strictly clinical perspective [ 10 ].…”

Section: Introductionmentioning

confidence: 99%

Facebook as a Medium for the Support and Enhancement of Ambulatory Care for People With Diabetes: Qualitative Realist Evaluation of a Real-World Trial

et al. 2020

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Background There is a growing focus on the potential uses, benefits, and limitations of social media in the context of health care communication. In this study, we have sought to evaluate an initiative pioneered at a hospital in Denmark that uses Facebook to support and enhance patient-provider communication about diabetes. Objective This paper aims to evaluate the success of the trial according to its initial objectives and to assess its potential scalability. Methods The study was undertaken in a clinic for diabetes and hormonal diseases at a large regional hospital in Denmark. Using a realist evaluation approach, we identified 4 key components in the program theory of the initiative, which we formulated as context-mechanism-outcome configurations (eg, complex and iterative chains of causality). These configurations informed data gathering and analysis. Primary data sources were the activity and content in the Facebook group, in the form of posts, likes, and comments, and interviews with patients (n=26) and staff (n=6) at the clinic. Results New developments in diabetes technology were the most popular posts in the forum, judged by number of likes and comments. Otherwise, information specific to the clinic received the most attention. All 4 components of the program theory were compromised to varying degrees, either as a result of failings in the anticipated mechanisms of change or contextual factors derived from the mode of implementation. Conclusions Social media serves well as a conduit for imagining positive change, but this can be a strength and weakness when attempting to enact change via concrete interventions, where stakeholder expectations may be unreasonably high or incompatible. Nonetheless, such initiatives may possess intangible benefits difficult to measure in terms of cost-effectiveness.

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