Background Since the emergence of social media in 2004, a growing percentage of patients use this technology for health related reasons. To reflect on the alleged beneficial and potentially harmful effects of social media use by patients, the aim of this paper is to provide an overview of the extant literature on the effects of social media use for health related reasons on patients and their relationship with healthcare professionals. Methods We conducted a systematic literature review on empirical research regarding the effects of social media use by patients for health related reasons. The papers we included met the following selection criteria: (1) published in a peer-reviewed journal, (2) written in English, (3) full text available to the researcher, (4) contain primary empirical data, (5) the users of social media are patients, (6) the effects of patients using social media are clearly stated, (7) satisfy established quality criteria. Results Initially, a total of 1,743 articles were identified from which 22 were included in the study. From these articles six categories of patients’ use of social media were identified, namely: emotional, information, esteem, network support, social comparison and emotional expression. The types of use were found to lead to seven identified types of effects on patients, namely improved self-management and control, enhanced psychological well-being, and enhanced subjective well-being, diminished subjective well-being, addiction to social media, loss of privacy, and being targeted for promotion. Social media use by patients was found to affect the healthcare professional and patient relationship, by leading to more equal communication between the patient and healthcare professional, increased switching of doctors, harmonious relationships, and suboptimal interaction between the patient and healthcare professional. Conclusions Our review provides insights into the emerging utilization of social media in healthcare. In particular, it identifies types of use by patients as well as the effects of such use, which may differ between patients and doctors. Accordingly, our results framework and propositions can serve to guide future research, and they also have practical implications for healthcare providers and policy makers.

/pdf/social-media-use-in-healthcare-a-systematic-review-of-2rkuy4hsz0.pdf

Social media use in healthcare: A systematic review of effects on patients and on their relationship with healthcare professionals

https://www.acsu.buffalo.edu/~hwang23/Research/JournalArticles/Chung_et_al2010_CHB.pdf

Age differences in perceptions of online community participation among non-users: An extension of the Technology Acceptance Model

Introduction: The amount of information being uploaded onto social video platforms, such as YouTube, Vimeo, and Veoh, continues to spiral, making it increasingly difficult to discern reliable health information from misleading content. There are thousands of YouTube videos promoting misleading information about anorexia (eg, anorexia as a healthy lifestyle). Objective: The aim of this study was to investigate anorexia-related misinformation disseminated through YouTube videos. Methods: We retrieved YouTube videos related to anorexia using the keywords anorexia, anorexia nervosa, proana, and thinspo on October 10, 2011.Three doctors reviewed 140 videos with approximately 11 hours of video content, classifying them as informative, pro-anorexia, or others. By informative we mean content describing the health consequences of anorexia and advice on how to recover from it; by pro-anorexia we mean videos promoting anorexia as a fashion, a source of beauty, and that share tips and methods for becoming and remaining anorexic. The 40 most-viewed videos (20 informative and 20 pro-anorexia videos) were assessed to gauge viewer behavior. Results: The interrater agreement of classification was moderate (Fleiss’ kappa=0.5), with 29.3% (n=41) being rated as pro-anorexia, 55.7% (n=78) as informative, and 15.0% (n=21) as others. Pro-anorexia videos were favored 3 times more than informative videos (odds ratio [OR] 3.3, 95% CI 3.3-3.4, P<.001). Conclusions: Pro-anorexia information was identified in 29.3% of anorexia-related videos. Pro-anorexia videos are less common than informative videos; however, in proportional terms, pro-anorexia content is more highly favored and rated by its viewers. Efforts should focus on raising awareness, particularly among teenagers, about the trustworthiness of online information about beauty and healthy lifestyles. Health authorities producing videos to combat anorexia should consider involving celebrities and models to reach a wider audience. More research is needed to study the characteristics of pro-anorexia videos in order to develop algorithms that will automatically detect and filter those videos before they become popular.

/pdf/misleading-health-related-information-promoted-through-video-2hitu2io77.pdf

Misleading Health-Related Information Promoted Through Video-Based Social Media: Anorexia on YouTube

Using information and communication technologies (ICTs) can improve older adults' quality of life. ICT use is associated with decreased feelings of loneliness and depression, along with increased feelings of independence and personal growth. However, limited access and low technological self-efficacy are key reasons why some groups, especially older adults, are excluded from being fully engaged in the digital world. In this study, we focus on older adults' technological self-efficacy, which is related to their actual use of technology and the second level digital divide. Specifically, we examine: 1) how older adults decide to use a new technology, tablet computers; 2) how they conquer the barrier of technological self-efficacy through using tablets; and 3) the impacts of using this new technology in their lives. Twenty-one in-depth interviews were conducted with older adults residing in independent living communities in a medium-sized city in the Deep South region of the United States. Observational and enactive learning played important roles for older adults in using tablets. Seeing others use tablets, getting recommendations from family members, or having tablets given to them were the primary reasons they started to use tablet computers. The ease of use feature of tablets helped solve the problem of lacking technological self-efficacy. Using tablets helped increase a sense of connectedness. Tablet computers may be one way to increase digital inclusion among older adults.

/pdf/getting-grandma-online-are-tablets-the-answer-for-increasing-frpdj70mem.pdf

Getting Grandma Online: Are Tablets the Answer for Increasing Digital Inclusion for Older Adults in the U.S.?

We present a review of literature from the fields of gerontology, gerontechnology, HCI and government policy that deals with social and technical solutions for the ageing population. We highlight common assumptions about ageing people, which we argue are still embedded in much of the research related to the domain of ageing. This paper challenges six common assumptions across four broad themes that we identified in the literature. It aims to provide a reminder and resource for designers to eschew assumptions during designing technology for 'older' users.

Dispelling ageing myths in technology design

This study examined the use that older, regular users of computers make of information and computer technology in their daily lives. Opinions from such users were obtained regarding what they want these technologies to offer them in the future. By means of a discussion group and an online questionnaire, our critical case examined a group of mature senior students from the Universitat Oberta de Catalunya (online learning) who have used computers and the Internet in their activities. In general, the participants needed to know the function of the tool beforehand and to have continued support and confidence. In particular, they need the certainty that the future technology will allow them to maintain their independence and autonomy. Older people's adoption of IT needs to be treated as more than merely a question of usability. Attitudes, experience of use, and perceived benefits are also key aspects that must be taken into account.

ICT and Older People: Beyond Usability.

The implications of caring for a child with cerebral palsy (CP) are considerable, and parents have to cope with many changing demands related to the specific needs of their child. A new research field, devoted to the consequences of these caring tasks, has recently emerged. However, an overall vision is lacking, one that would enable us to understand how research is evolving and the relevant data that should be taken into account when planning interventions with these families. In this paper, we review the literature on the effects of caregiving on parents of children with CP, and summarize the factors related to these effects. A systematic search of online databases was performed and further studies were identified based on the reference lists of selected articles. Forty six articles that met the inclusion criteria were analysed. The review shows that caregivers of children with CP tend to have high levels of stress and depression and lower quality of life than parents of healthy children. We identify child behaviour and cognitive problems, low caregiver self-efficacy and low social support as factors that are consistently related with higher levels of stress and depression. The implications of these findings are discussed, especially those related to interventions that should be addressed to the family as a whole and which should aim to enhance parents’ competence and resources to better cope with the demands of the caring task.

Impact of Caring for a Child with Cerebral Palsy on the Quality of Life of Parents: A Systematic Review of the Literature

https://munin.uit.no/bitstream/handle/10037/7163/RQ1_paper_1.pdf?sequence=4&isAllowed=y

ePatients on YouTube: analysis of four experiences from the patients' perspective.

This work analyzes the conceptual metaphors of depression in a corpus of 23 blogs written in Catalan by people suffering major depressive disorder. Its main aim was comparative, in order to check w...

https://www.tandfonline.com/doi/pdf/10.1080/10926488.2020.1845096

Metaphors of Depression. Studying First Person Accounts of Life with Depression Published in Blogs

The APTIC social network has been developed by PSiNET research group at the Universitat Oberta de Catalunya together with Hospital de St. Joan de Deu and Fesalud Foundation, and has been partially funded by Tic Salut Foundation (health department of the Catalan government). Our social network aims at enabling the individual members of patients’ associations (mostly parents of children with chronic and rare diseases) to share experiences, information, advice and, ultimately, to offer them on-line tools to improve the quality of life of the entire family. 

Participation in specialised social networks like APTIC offers a great opportunity to use technology to improve quality of life with low cost and with a large impact on health. From the health psychology perspective, variables such as the perception of self-efficacy, empowerment and social support are key to improving quality of life. For this reason, like health psychologists we are interested in the analysis of these variables and in their impact on the quality of life of members of patients’ associations. We are examining these variables and network usage in order to establish whether social networks are indeed useful for parents.

Our social network has been built on open source software and through collaborative work between organisations (the hospital itself, patients' associations...) and individual users.

We will offer our first results and some thoughts about the work with patients and families through social networks. Our goal is to enhance their positive effects, for instance using them as a tool to overcome the fragmentation of knowledge in the field of rare diseases.

/pdf/aptic-a-social-network-to-improve-the-quality-of-life-of-258kobc32j.pdf

Eulàlia Hernández-Encuentra

Papers

ICT and Older People: Beyond Usability.

Impact of Caring for a Child with Cerebral Palsy on the Quality of Life of Parents: A Systematic Review of the Literature

ePatients on YouTube: analysis of four experiences from the patients' perspective.

Metaphors of Depression. Studying First Person Accounts of Life with Depression Published in Blogs

APTIC: a social network to improve the quality of life of members of patients' associations