Online support for parents of preterm infants: a qualitative and content analysis of Facebook ‘preemie’ groups

Thoren, Emelie Maria; Metze, Boris; Bührer, Christoph; Garten, Lars

doi:10.1136/archdischild-2012-303572

Cited by 71 publications

(52 citation statements)

References 15 publications

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“…This is because social media helps to achieve a better perspective about health problems and eliminate sources of concern. Posting, sharing, and commenting on health-related issues, joining or developing online health communities, and exchanging information about health issues (Thoren et al, 2013) are social reinforcements that enable increased access to information and social advancement (DiMaggio & Bonikowski, 2008) and prompt a ''health empowerment'' process (Dutta-Bergman, 2006).…”

Section: Introductionmentioning

confidence: 99%

“…Social media have revolutionized communication, resulting in the creation of online social relationships on platforms such as Facebook and Twitter (Thoren, Metze, Bührer, & Garten, 2013), expanding social ties and increasing psychological well-being (Chen & Lee, 2013;Nabi, Prestin, & So, 2013). Diverse sources of relevant information located in social media, ICQ, chats, health forums, etc.…”

Section: Introductionmentioning

confidence: 99%

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Social media and online health services: A health empowerment perspective to online health information

Mano

2014

Computers in Human Behavior

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Section: Introductionmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

Social media and online health services: A health empowerment perspective to online health information

Mano

2014

Computers in Human Behavior

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“…They also found that the awareness groups had the most members, while the support groups generated the greatest number of posts. Thoren et al [12] examined the content of Facebook groups focusing on premature infants. Similar to findings from breast cancer groups, they found that most premature infant groups were devoted to fundraising or awareness purposes and that these groups had the most members.…”

Section: Introductionmentioning

confidence: 99%

Representation of Health Conditions on Facebook: Content Analysis and Evaluation of User Engagement

Hale¹,

Pathipati²,

Zan³

et al. 2014

J Med Internet Res

102

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BackgroundA sizable majority of adult Internet users report looking for health information online. Social networking sites (SNS) like Facebook represent a common place to seek information, but very little is known about the representation and use of health content on SNS.ObjectiveOur goal in this study was to understand the role of SNS in health information seeking. More specifically, we aimed to describe how health conditions are represented on Facebook Pages and how users interact with these different conditions.MethodsWe used Google Insights to identify the 20 most searched for health conditions on Google and then searched each of the resulting terms on Facebook. We compiled a list of the first 50 Facebook “Pages” results for each health condition. After filtering results to identify pages relevant to our research, we categorized pages into one of seven categories based on the page’s primary purpose. We then measured user engagement by evaluating the number of “Likes” for different conditions and types of pages.ResultsThe search returned 50 pages for 18 of the health conditions, but only 48 pages were found for “anemia” and 5 pages were found for “flu symptoms”, yielding a total of 953 pages. A large number of pages (29.4%, 280/953) were irrelevant to the health condition searched. Of the 673 relevant pages, 151 were not in English or originated outside the United States, leaving 522 pages to be coded for content. The most common type of page was marketing/promotion (32.2%, 168/522) followed by information/awareness (20.7%, 108/522), Wikipedia-type pages (15.5%, 81/522), patient support (9.4%, 49/522), and general support (3.6%, 19/522). Health conditions varied greatly by the primary page type. All health conditions had some marketing/promotion pages and this made up 76% (29/38) of pages on acquired immunodeficiency syndrome (AIDS). The largest percentage of general support pages were cancer (19%, 6/32) and stomach (16%, 4/25). For patient support, stroke (67%, 4/6), lupus (33%, 10/30), breast cancer (19%, 6/31), arthritis (16%, 6/36), and diabetes (16%, 6/37) ranked the highest. Six health conditions were not represented by any type of support pages (ie, human papillomavirus, diarrhea, flu symptoms, pneumonia, spine, human immunodeficiency virus). Marketing/promotion pages accounted for 46.73% (10,371,169/22,191,633) of all Likes, followed by support pages (40.66%, 9,023,234/22,191,633). Cancer and breast cancer accounted for 86.90% (19,284,066/22,191,633) of all page Likes.ConclusionsThis research represents the first attempts to comprehensively describe publicly available health content and user engagement with health conditions on Facebook pages. Public health interventions using Facebook will need to be designed to ensure relevant information is easy to find and with an understanding that stigma associated with some health conditions may limit the users’ engagement with Facebook pages. This line of research merits further investigation as Facebook and other SNS continue to evolve over the coming years.

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“…In addition, the information age has engendered public awareness of the development of medical science and technology; consequently, parents of critically impaired infants are often encouraged by the use of the Internet and social networking support groups to request lifesustaining treatment to save their child from death (Thoren et al 2013). Parent-doctor disagreements concerning withdrawal or withholding of lifesustaining treatment for severely ill infants are generally resolved in the hospital setting.…”

Section: Introductionmentioning

confidence: 98%

Deficiencies and Missed Opportunities to Formulate Clinical Guidelines in Australia for Withholding or Withdrawing Life-Sustaining Treatment in Severely Disabled and Impaired Infants

Bhatia

Tibballs

2014

Bioethical Inquiry

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This paper examines the few, but important legal and coronial cases concerning withdrawing or withholding life-sustaining treatment from severely disabled or critically impaired infants in Australia. Although sparse in number, the judgements should influence common clinical practices based on assessment of "best interests" but these have not yet been adopted. In particular, although courts have discounted assessment of "quality of life" as a legitimate component of determination of "best interests," this remains a prominent component of clinical guidelines. In addition, this paper highlights the lack of uniform clinical guidelines available to medical professionals and parents in Australia when making end-of-life decisions for severely ill infants. Thus, it is argued here that there is a need for an overarching prescriptive uniform framework or set of guidelines in end-of-life decision-making for impaired infants. This would encourage greater transparency, consistency, and some degree of objectivity in an area that often appears subjective.

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Online support for parents of preterm infants: a qualitative and content analysis of Facebook ‘preemie’ groups

Cited by 71 publications

References 15 publications

Social media and online health services: A health empowerment perspective to online health information

Social media and online health services: A health empowerment perspective to online health information

Representation of Health Conditions on Facebook: Content Analysis and Evaluation of User Engagement

Deficiencies and Missed Opportunities to Formulate Clinical Guidelines in Australia for Withholding or Withdrawing Life-Sustaining Treatment in Severely Disabled and Impaired Infants

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