Confronting Craniosynostosis: Maternal Concerns, Challenges, and Coping for their Children.

IF 1.1 4区医学 Q2 Dentistry

Cleft Palate-Craniofacial Journal Pub Date : 2024-10-21 DOI:10.1177/10556656241286835

Ethan D Paliwoda, Alejandro Torres, Elma Dema, Avi A Gajjar, Mason J Horne, Mathew Trandafirescu, Matthew A Adamo, Benjamin J Schalet, Stephanie M C Bray

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引用次数: 0

Abstract

Objective: The study objective was to characterize shared online experiences surrounding craniosynostosis.

Methods: Isolated and syndromic craniosynostosis-related consecutive posts (N = 700) made by patients and caregivers were extracted from TikTok and Instagram between 2017-2024. A cross-sectional qualitative analysis following guidelines for practical thematic analysis was performed.

Results: The majority of posts were by caregivers (96%) and by females (97%). Forty categorical subthemes from social media posts were synthesized into 4 predominant themes. Overarching thematic trends included Emotional and Psychological Support (47%), Medical Information and Treatment (27%), Family and Social Dynamics (15%), and Awareness, Education, and Advocacy (12%).

Conclusion: Social media is used by caregivers, primarily mothers, for emotional support, processing health information, sharing experiences, raising awareness, and celebrating "cranioversaries." Male and patient perspectives were underrepresented. Physicians may use social media to gain insights, disseminate quality health information, and connect with patients.

查看原文本刊更多论文

面对颅骨发育不良：母亲对子女的关注、挑战与应对。

研究目的研究目的是描述与颅骨发育不良有关的共同在线经历：从 TikTok 和 Instagram 中提取了 2017-2024 年间由患者和护理人员发布的与颅骨综合症相关的孤立和综合征连续帖子（N = 700）。按照实用主题分析指南进行了横向定性分析：大多数帖子是由护理人员（96%）和女性（97%）发布的。社交媒体帖子中的 40 个分类次主题被归纳为 4 个主导主题。总体主题趋势包括情感和心理支持（47%）、医疗信息和治疗（27%）、家庭和社会动态（15%）以及认识、教育和宣传（12%）：结论：护理人员（主要是母亲）使用社交媒体来获得情感支持、处理健康信息、分享经验、提高认识和庆祝 "母亲节"。男性和患者的观点代表性不足。医生可以利用社交媒体获得洞察力、传播高质量的健康信息并与患者建立联系。

本文章由计算机程序翻译，如有差异，请以英文原文为准。

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来源期刊

Cleft Palate-Craniofacial Journal DENTISTRY, ORAL SURGERY & MEDICINE-SURGERY

CiteScore

2.20

自引率

36.40%

发文量

审稿时长

4-8 weeks

期刊介绍： The Cleft Palate-Craniofacial Journal (CPCJ) is the premiere peer-reviewed, interdisciplinary, international journal dedicated to current research on etiology, prevention, diagnosis, and treatment in all areas pertaining to craniofacial anomalies. CPCJ reports on basic science and clinical research aimed at better elucidating the pathogenesis, pathology, and optimal methods of treatment of cleft and craniofacial anomalies. The journal strives to foster communication and cooperation among professionals from all specialties.