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Use of social media by people living with lupus to address unmet health needs: A scoping review

McCaffrey, Nicole Rachel (2024) Use of social media by people living with lupus to address unmet health needs: A scoping review. Master's Thesis, University of Pittsburgh. (Unpublished)

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Systemic lupus erythematosus (SLE) is an autoimmune disease which disproportionately impacts women and people of color. People with SLE require ongoing specialized care, but face challenges with diagnosis, understanding the disease, treatments, and emotional support. As with other people with chronic illness, who use online health information for emotional and informational support needs, people with SLE may use social media to address these gaps. This scoping review explores how people with SLE use social media to address unmet health needs, including in the review an investigation of methodologies used in this research, representation of diverse racial and ethnic groups, countries in which this topic was studied, and social media platforms studied. Using search strategies developed with a health sciences reference librarian, one reviewer searched Medline (Ovid) and PsycInfo (Ovid) for articles related to systemic lupus erythematosus and social media. Following data extraction, preliminary findings and implications were also presented to key informants (n=2) to discuss the feasibility of recommendations for practice and priorities for future research. 186 articles were found in the search process, and sixteen articles were selected for review. Uses of social media identified in the literature included exchanging information, coping emotionally, learning about SLE and treatments, navigating health services, and advocacy. Most studies were observational in their study designs and sampled online postings for data collection and analysis. Qualitative, quantitative, and mixed methods were all used. The United States was the most frequently represented country. Few studies were able to describe the racial and ethnic demographics of their sample, and of those, most included a majority or plurality of White participants. YouTube was the most frequently studied specific social media platform; varied forums were also frequently studied. Health issues frequently discussed online, benefits of social media use, preferred sources of information, and engagement with social media content are also explored. Recommendations for listening to and applying patients’ experiences of social media use to address unmet health needs are provided and priorities for future research are discussed.


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Item Type: University of Pittsburgh ETD
Status: Unpublished
CreatorsEmailPitt UsernameORCID
McCaffrey, Nicole Rachelnrm63@pitt.edunrm63
ETD Committee:
TitleMemberEmail AddressPitt UsernameORCID
Committee ChairSidani, Jaimejaime.sidani@pitt.edujaime.sidani
Committee MemberFelter, Elizabethemfelter@pitt.eduemfelter
Committee MemberSchlenk, Elizabethels100@pitt.eduels100
Date: 17 May 2024
Date Type: Publication
Defense Date: 17 April 2024
Approval Date: 17 May 2024
Submission Date: 25 April 2024
Access Restriction: 2 year -- Restrict access to University of Pittsburgh for a period of 2 years.
Number of Pages: 95
Institution: University of Pittsburgh
Schools and Programs: School of Public Health > Behavioral and Community Health Sciences
Degree: MPH - Master of Public Health
Thesis Type: Master's Thesis
Refereed: Yes
Uncontrolled Keywords: systemic lupus erythematosus, lupus, social media, online communities, scoping review
Date Deposited: 17 May 2024 17:26
Last Modified: 17 May 2024 17:26


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