Use and Taxonomy of Social Media in Cancer-Related Research: A Systematic Review

Koskan, Alexis; Klasko, Lynne; Davis, Stacy N.; Gwede, Clement K.; Wells, Kristen J.; Kumar, Amit; López, Natalia Vila; Meade, Cathy D.

doi:10.2105/ajph.2014.301980

Cited by 80 publications

(81 citation statements)

References 77 publications

(192 reference statements)

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“…A systematic review of the literature on cancer and social media found that most studies using social media focus on how patients access social support through disease-specific social media. 33 In this study, parents reported that finding the blog and hearing about other infants with the same condition was relieving, especially in light of their providers' lack of awareness of DSFC. Family physicians and other providers should know that online support groups and disease-specific blogs exist and can be excellent resources for patients and families, especially those struggling with rare diseases.…”

Section: Discussionmentioning

confidence: 83%

Experiences of Parents Caring for Infants with Rare Scalp Mass as Identified through a Disease-Specific Blog

Worthen

Leonard²,

Blair³

et al. 2015

The Journal of the American Board of Family Medicine

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Background: Delayed subaponeurotic fluid collection (DSFC) is a self-limited disorder of unknown etiology characterized by a benign, fluid-filled mass in the subaponeurotic layer of an infant's scalp. While a few case series describe DSFC, the experiences of families whose infants develop this condition have not previously been reported.Methods: We used a disease-specific blog to evaluate the experiences of 69 families affected by DSFC. We identified self-reported clinical features of DSFC and qualitatively analyzed the families' experiences with obtaining a diagnosis and care for their infants.Results: Infants presented in several clinical settings, and multiple diagnostic procedures were administered, including ultrasound (46%), computed tomography (30%), and head radiography (22%). Qualitative themes emerged: lack of provider awareness of DSFC, concern about potentially harmful diagnostic procedures, suspicion of child abuse, and the importance of the website in providing support to families.Conclusions: Though DSFC can be diagnosed clinically and its natural history is benign, its presence can be emotionally draining for parents. Physicians should be aware of this clinical entity to rapidly allay parental distress and avoid unnecessary procedures. Disease-specific blogs can help providers learn about rare diseases, contain useful clinical information for research, and can benefit patient care by providing social support for families. (J Am Board Fam Med 2015;28:750 -758.)

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Section: Discussionmentioning

confidence: 83%

Experiences of Parents Caring for Infants with Rare Scalp Mass as Identified through a Disease-Specific Blog

Worthen

Leonard²,

Blair³

et al. 2015

The Journal of the American Board of Family Medicine

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“…Although SoMe platforms were not designed to be research tools (Swirsky et al, 2014) they have rapidly become the focus of research and developed into forums for online intervention studies (Koskan et al, 2014). There is a clear need to develop methodological frameworks and theoretical grounding for SoMe research (van Osch & Coursaris, 2014) and as more work is done in this fi eld these will emerge over time.…”

Section: Methodological Considerationsmentioning

confidence: 99%

Perspectives on social media in and as research: A synthetic review

Lafferty

Manca

2015

International Review of Psychiatry

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With the growth of social media use in both the private and public spheres, researchers are currently exploring the new opportunities and practices offered by these tools in the research lifecycle. This area is still in its infancy: As methodological approaches and methods are being tested - mainly through pragmatic and exploratory approaches - practices are being shaped and negotiated by the actors involved in research. A further element of complexity is added by the ambivalent status of social media within research activities. They can be both a tool - for recruitment, data collection, analysis - and data - as what constitutes the corpus to be analysed - both in an observational and interactive domain. This synthetic analysis of the literature is aimed at identifying how social media are currently being used in research and how they fit into the research lifecycle. We identify and discuss emerging evidence and trends in the adoption of social media in research, which can be used and applied by psychiatry research practitioners as a framework to inform the development of a personalized research network and social media strategy in research.

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“…9 However, anonymous online forums, such as message boards and support groups, provide information, emotional support and an avenue for selfexpression. 23 Future research could focus on determining why individuals choose to share health information on social media and what they hope to obtain from it, as well as why others choose not to do so. A better understanding of how and why people share health information from sources such as pharmacies or health departments is necessary before widespread use of this approach can be recommended.…”

Section: Content Analyses Of Breast Cancer Specific Facebook Groupsmentioning

confidence: 99%

Relationship between Health Information Sharing Behavior Using Social Media and Breast Cancer Screening

Deshpande

Look

2017

Innov Pharm

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Keywords: breast cancer screening; social media; health information sharing Introduction Social media, a means of electronic communication where users can share information and ideas online, is increasingly being used for sharing health information.1, 2 A Pew Research Center report found that 4 out of 10 people who commented on their health online have shared their personal health experiences online with others.3 Social media can increase engagement and access to health information to broader and more diverse audiences, as 71% of adults over 18 years old who use the internet also use social media.2, 4 Communicating health information on social media is a rapid, low-cost method that can easily offer a large amount of information to a large audience and can impact their health and health behaviors.

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Use and Taxonomy of Social Media in Cancer-Related Research: A Systematic Review

Cited by 80 publications

References 77 publications

Experiences of Parents Caring for Infants with Rare Scalp Mass as Identified through a Disease-Specific Blog

Experiences of Parents Caring for Infants with Rare Scalp Mass as Identified through a Disease-Specific Blog

Perspectives on social media in and as research: A synthetic review

Relationship between Health Information Sharing Behavior Using Social Media and Breast Cancer Screening

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