Rare disease narratives on social media: A content analysis
Purpose: Social media provides an opportunity for the expression of people with rare conditions and may provide valuable insight into lived experiences to inform genomic care. Our objective was to describe the nature and content of rare disease video narratives on social media. Methods: We reviewed...
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| Format: | Article |
| Language: | English |
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Elsevier
2025-01-01
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| Series: | Genetics in Medicine Open |
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| Online Access: | http://www.sciencedirect.com/science/article/pii/S2949774425008830 |
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| author | Hannah J. Park Cassidy J. Scott Hadley Stevens Smith Monica H. Wojcik |
| author_facet | Hannah J. Park Cassidy J. Scott Hadley Stevens Smith Monica H. Wojcik |
| author_sort | Hannah J. Park |
| collection | DOAJ |
| description | Purpose: Social media provides an opportunity for the expression of people with rare conditions and may provide valuable insight into lived experiences to inform genomic care. Our objective was to describe the nature and content of rare disease video narratives on social media. Methods: We reviewed content on a short-video-format social media website containing the tags of #raredisease, #raredisorder, or #raredisorders. Two authors independently coded videos for content matter and conducted thematic analysis using a mixed deductive-inductive approach. The demographic characteristics of the content and names of specific rare conditions were documented when available, as were the characteristics of the videos themselves. Results: We reviewed 500 videos created by 299 unique users and identified 6 major themes: Spreading Awareness, Guidance for Others, Intimate View into Life, Interactions with Health care, Responses, and Requests for Support. The video narrators were typically family members or caregivers (50.2%) or the person affected (46.6%); a small percentage were health care professionals (2.2%). People with rare diseases in the video comprised both children (40.6%) and adults (52.6%). A total of 189 rare conditions were mentioned, the most common being Ehler-Danlos syndrome (7.8%), Sanfilippo syndrome (1.8%), and narcolepsy (1.8%). Conclusion: Our data suggest that video-format social media allows community building among people affected by rare conditions. Insights from narratives expressed in this format may contribute to a better understanding of medical experiences in the context of daily life, both positive and negative, fostering empathy and leading to improvements in genomic medicine practice. |
| format | Article |
| id | doaj-art-390fcb66b99241348643e3fc3d5de990 |
| institution | DOAJ |
| issn | 2949-7744 |
| language | English |
| publishDate | 2025-01-01 |
| publisher | Elsevier |
| record_format | Article |
| series | Genetics in Medicine Open |
| spelling | doaj-art-390fcb66b99241348643e3fc3d5de9902025-08-20T02:47:13ZengElsevierGenetics in Medicine Open2949-77442025-01-01310284410.1016/j.gimo.2025.102844Rare disease narratives on social media: A content analysisHannah J. Park0Cassidy J. Scott1Hadley Stevens Smith2Monica H. Wojcik3Division of Newborn Medicine, Boston Children’s Hospital and Harvard Medical School, Boston, MA; Division of Genetics and Genomics, Department of Pediatrics, Boston Children’s Hospital and Harvard Medical School, Boston, MADivision of Newborn Medicine, Boston Children’s Hospital and Harvard Medical School, Boston, MA; Division of Genetics and Genomics, Department of Pediatrics, Boston Children’s Hospital and Harvard Medical School, Boston, MADepartment of Population Medicine, Harvard Medical School and Harvard Pilgrim Health Care Institute, Boston MA; Center for Bioethics, Harvard Medical School, Boston, MADivision of Newborn Medicine, Boston Children’s Hospital and Harvard Medical School, Boston, MA; Division of Genetics and Genomics, Department of Pediatrics, Boston Children’s Hospital and Harvard Medical School, Boston, MA; Correspondence and requests for materials should be addressed to Monica H. Wojcik, Boston Children's Hospital, 300 Longwood Avenue, Hunnewell 4th Floor, Boston, MA 02115Purpose: Social media provides an opportunity for the expression of people with rare conditions and may provide valuable insight into lived experiences to inform genomic care. Our objective was to describe the nature and content of rare disease video narratives on social media. Methods: We reviewed content on a short-video-format social media website containing the tags of #raredisease, #raredisorder, or #raredisorders. Two authors independently coded videos for content matter and conducted thematic analysis using a mixed deductive-inductive approach. The demographic characteristics of the content and names of specific rare conditions were documented when available, as were the characteristics of the videos themselves. Results: We reviewed 500 videos created by 299 unique users and identified 6 major themes: Spreading Awareness, Guidance for Others, Intimate View into Life, Interactions with Health care, Responses, and Requests for Support. The video narrators were typically family members or caregivers (50.2%) or the person affected (46.6%); a small percentage were health care professionals (2.2%). People with rare diseases in the video comprised both children (40.6%) and adults (52.6%). A total of 189 rare conditions were mentioned, the most common being Ehler-Danlos syndrome (7.8%), Sanfilippo syndrome (1.8%), and narcolepsy (1.8%). Conclusion: Our data suggest that video-format social media allows community building among people affected by rare conditions. Insights from narratives expressed in this format may contribute to a better understanding of medical experiences in the context of daily life, both positive and negative, fostering empathy and leading to improvements in genomic medicine practice.http://www.sciencedirect.com/science/article/pii/S2949774425008830GeneticsGenomicsNarrativeRare diseaseSocial media |
| spellingShingle | Hannah J. Park Cassidy J. Scott Hadley Stevens Smith Monica H. Wojcik Rare disease narratives on social media: A content analysis Genetics in Medicine Open Genetics Genomics Narrative Rare disease Social media |
| title | Rare disease narratives on social media: A content analysis |
| title_full | Rare disease narratives on social media: A content analysis |
| title_fullStr | Rare disease narratives on social media: A content analysis |
| title_full_unstemmed | Rare disease narratives on social media: A content analysis |
| title_short | Rare disease narratives on social media: A content analysis |
| title_sort | rare disease narratives on social media a content analysis |
| topic | Genetics Genomics Narrative Rare disease Social media |
| url | http://www.sciencedirect.com/science/article/pii/S2949774425008830 |
| work_keys_str_mv | AT hannahjpark rarediseasenarrativesonsocialmediaacontentanalysis AT cassidyjscott rarediseasenarrativesonsocialmediaacontentanalysis AT hadleystevenssmith rarediseasenarrativesonsocialmediaacontentanalysis AT monicahwojcik rarediseasenarrativesonsocialmediaacontentanalysis |