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題名 自閉症兒童父母線上社群的資訊搜尋與情緒表達:網路民族誌研究
Information seeking and emotional expression among parents of children with Autism Spectrum Disorder: A netnographic study of an online health community作者 王品然
Wang, Pin-Ran貢獻者 李怡慧
王品然
Wang, Pin-Ran關鍵詞 線上健康社群
自閉症
照護者
討論話題
情緒表達
網路民族誌
Online health communities
Autism Spectrum Disorder
Caregivers
Discussion topics
Emotional expressions
Netnography日期 2024 上傳時間 4-Sep-2024 14:04:32 (UTC+8) 摘要 自閉症孩童父母面對孩子一輩子的自閉症挑戰，線上健康社群成為關鍵的支持來 源。然而，文獻卻較少深入研究父母長期在社群中的討論與情感。本研究以此為 研究目的，並進一步探索討論主題與情緒表達之間的關聯。本研究以 Autism Parenting subreddit 論壇為研究目標，使用網路民族誌方法觀察，同時蒐集了 3,843 篇貼文作為檔案資料，並使用自然語言處理輔助內容分析。結果發現，在確診後 的「初步詢問」階段，父母積極參與線上健康社區，尋求具體方法來改善孩子的 症狀。隨著進入「情感掙扎與社會孤立」階段，討論圍繞在孩子的語言發展、飲 食和家庭影響所引起的情緒崩潰。當在「身份形成與角色調整」階段，父母出現 了準備的心理狀態，真正接受自閉症並做出改變，討論聚焦在日常生活的調整。 最後，在「夢想修訂與未來規劃」階段，父母專注於未來的準備、食物與孩子人 生規劃。本研究在理論貢獻上，延伸了 Lutz 等人(2012)在 Adaptation Journey 的討論話題與情感表達。在實務貢獻上，本結果有助於大眾進一步理解自閉症孩 童，幫助新自閉症孩童父母提早認識並能更好的應對育兒過程。
Parents of children with Autism Spectrum Disorder (ASD) face lifelong challenges, with online health communities (OHC) becoming a crucial source of support. However, the literature has rarely delved into the long-term discussions and emotions of these parents within such communities. This study aims to explore the relationship between discussion topics and emotional expression, focusing on the Autism Parenting subreddit. Using netnography, I observed and collected 3,843 posts as archival data, employing natural language processing to assist content analysis. The results revealed that during the "Initial Inquiry" stage following diagnosis, parents actively participated in OHCs, seeking specific methods to improve their child's symptoms. As they entered the "Psychological Struggles and Social Isolation" stage, discussions centered on emotional meltdowns triggered by children's language development, diet, and family impact. In the "Identity Formation and Role Adjustment" stage, parents showed a readiness to accept ASD and make changes, focusing discussions on daily life adjustments. Finally, in the "Dream Revision and Future Planning" stage, parents concentrated on future preparation, food, and life planning for their children. Theoretically, this study extends the discussion topics and emotional expressions in Lutz et al.'s (2012) Adaptation Journey. Practically, these findings contribute to a deeper understanding of ASD children and help new ASD parents better prepare for and cope with the parenting journey.參考文獻 Addeo, F., Paoli, A. D., Esposito, M., & Bolcato, M. Y. (2019). Doing social research on online communities: The benefits of netnography. Athens journal of social sciences, 7(1), 9-38. Allen, C., Vassilev, I., Kennedy, A., & Rogers, A. (2016). Long-Term Condition Self- Management Support in Online Communities: A Meta-Synthesis of Qualitative Papers. Journal of Medical Internet Research, 18(3), e61. doi:10.2196/jmir.5260 American Psychiatric Association, DSM-5 Task Force. (2013). Diagnostic and statistical manual of mental disorders: DSM-5TM (5th ed.). American Psychiatric Publishing, Inc Autism Task Force, Department of Public Welfare. (2004). Autism Task Force Final Report. Office of the Secretary, Health and Welfare Building, Commonwealth of Pennsylvania. Retrieved from https://mccordlibrary.org/wp- content/uploads/2018/06/pa-dep-welfare-autism-task-force-2004-352pgs.pdf Barak, A., Boniel-Nissim, M., & Suler, J. (2008). Fostering empowerment in online support groups. Computers in human behavior, 24(5), 1867-1883 Barlow, D. H. (2004). Anxiety and its disorders: The nature and treatment of anxiety and panic. Guilford Press, New York Bender, J. L., Jimenez-Marroquin, M. C., Ferris, L. E., Katz, J., & Jadad, A. R. (2013). Online communities for breast cancer survivors: a review and analysis of their characteristics and levels of use. Supportive Care in Cancer, 21, 1253-1263. Brown, B. (2006). Shame resilience theory: A grounded theory study on women and shame. Families in Society, 87(1), 43-52. Cardinal, D. N., Griffiths, A. J., Maupin, Z. D., & Fraumeni‐McBride, J. (2021). An investigation of increased rates of autism in US public schools. Psychology in the Schools, 58(1), 124-140. 53 Chmiel, A., Sienkiewicz, J., Thelwall, M., Paltoglou, G., Buckley, K., Kappas, A., & Hołyst, J. A. (2011). Collective emotions online and their influence on community life. PLOS ONE, 6(7), e22207. Dahlqvist, C. and Persson, C. (2023), “Cognitive appraisals and information-seeking achievement emotions: a qualitative study of Swedish primary teacher students”, Journal of Documentation, Vol. 79 No. 7, pp. 280-307. https://doi.org/10.1108/JD-05-2023-0100 de Jong Gierveld, J. (1998). A review of loneliness: concept and definitions, determinants and consequences. Reviews in clinical gerontology, 8(1), 73-80. Estes, A., Munson, J., Dawson, G., Koehler, E., Zhou, X. H., & Abbott, R. (2009). Parenting stress and psychological functioning among mothers of preschool children with autism and developmental delay. Autism, 13(4), 375-387. Hilliard, M. E., Sparling, K. M., Hitchcock, J., Oser, T. K., & Hood, K. K. (2015). The emerging diabetes online community. Current Diabetes Reviews, 11(4), 261- 272. Farrugia, D. (2009). Exploring stigma: medical knowledge and the stigmatisation of parents of children diagnosed with autism spectrum disorder. Sociology of Health & Illness, 31(7), 1011-1027. Goh, J. M., Gao, G. (Gordon), & Agarwal, R. (2016). The Creation of Social Value: Can an Online Health Community Reduce Rural–Urban Health Disparities? MIS Quarterly, 40(1), 247-264. Gray, D. E. (1993). Perceptions of stigma: The parents of autistic children. Sociology of Health & Illness, 15(1), 102-120. Gray, D. E. (2002). ‘Everybody just freezes. Everybody is just embarrassed’: Felt and enacted stigma among parents of children with high functioning autism. Sociology of Health & Illness, 24(6), 734-749. Gray, D. E. (2002). Ten years on: A longitudinal study of families of children with autism. Journal of intellectual and developmental disability, 27(3), 215-222. 54 Hutto, C., & Gilbert, E. (2014, May). Vader: A parsimonious rule-based model for sentiment analysis of social media text. In Proceedings of the international AAAI conference on web and social media (Vol. 8, No. 1, pp. 216-225). Hyman, S. L., Levy, S. E., & Myers, S. M.; American Academy of Pediatrics, Council on Children With Disabilities and Section on Developmental and Behavioral Pediatrics. (2020). Clinical report: Identification, evaluation, and management of children with autism spectrum disorder. Pediatrics, 145(1), e20193447. Ingwersen, P. (1986). Cognitive analysis and the role of the intermediary in information retrieval. In R. Davies (Ed.), Intelligent information systems (pp. 206–237). Chichester, UK: Horwood. Ingwersen, P. (2000). Users in Context. In: Agosti, M., Crestani, F., Pasi, G. (eds) Lectures on Information Retrieval. ESSIR 2000. Lecture Notes in Computer Science, vol 1980. Springer, Berlin, Heidelberg. Klin, A., Saulnier, C. A., Sparrow, S. S., Cicchetti, D. V., Volkmar, F. R., & Lord, C. (2007). Social and communication abilities and disabilities in higher functioning individuals with autism spectrum disorders: The Vineland and the ADOS. Journal of autism and developmental disorders, 37, 748-759. Kogan, M. D., Strickland, B. B., Blumberg, S. J., Singh, G. K., Perrin, J. M., & van Dyck, P. C. (2008). A national profile of the health care experiences and family impact of autism spectrum disorder among children in the United States, 2005– 2006. Pediatrics, 122(6), e1149-e1158. Kozinets, R. V. (1998). 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Longitudinal analysis of discussion topics in an online breast cancer community using convolutional neural networks. Journal of biomedical informatics, 69, 1-9. Zhang, X., Chen, B., Li, G., & Dong, Y. (2022). Exploring the health information seeking behavior of social media users under the background of COVID-19 pandemic: An empirical study based on social cognitive theory. Frontiers in psychology, 13, 1045914. 58 Zhou, J., Zhang, Q., Zhou, S., Li, X., & Zhang, X. M. (2023). Unintended emotional effects of online health communities: A text mining-supported empirical study. MIS Quarterly. 描述 碩士
國立政治大學
資訊管理學系
111356029資料來源 http://thesis.lib.nccu.edu.tw/record/#G0111356029 資料類型 thesis dc.contributor.advisor 李怡慧 zh_TW dc.contributor.author (Authors) 王品然 zh_TW dc.contributor.author (Authors) Wang, Pin-Ran en_US dc.creator (作者) 王品然 zh_TW dc.creator (作者) Wang, Pin-Ran en_US dc.date (日期) 2024 en_US dc.date.accessioned 4-Sep-2024 14:04:32 (UTC+8) - dc.date.available 4-Sep-2024 14:04:32 (UTC+8) - dc.date.issued (上傳時間) 4-Sep-2024 14:04:32 (UTC+8) - dc.identifier (Other Identifiers) G0111356029 en_US dc.identifier.uri (URI) https://nccur.lib.nccu.edu.tw/handle/140.119/153154 - dc.description (描述) 碩士 zh_TW dc.description (描述) 國立政治大學 zh_TW dc.description (描述) 資訊管理學系 zh_TW dc.description (描述) 111356029 zh_TW dc.description.abstract (摘要) 自閉症孩童父母面對孩子一輩子的自閉症挑戰，線上健康社群成為關鍵的支持來 源。然而，文獻卻較少深入研究父母長期在社群中的討論與情感。本研究以此為 研究目的，並進一步探索討論主題與情緒表達之間的關聯。本研究以 Autism Parenting subreddit 論壇為研究目標，使用網路民族誌方法觀察，同時蒐集了 3,843 篇貼文作為檔案資料，並使用自然語言處理輔助內容分析。結果發現，在確診後 的「初步詢問」階段，父母積極參與線上健康社區，尋求具體方法來改善孩子的 症狀。隨著進入「情感掙扎與社會孤立」階段，討論圍繞在孩子的語言發展、飲 食和家庭影響所引起的情緒崩潰。當在「身份形成與角色調整」階段，父母出現 了準備的心理狀態，真正接受自閉症並做出改變，討論聚焦在日常生活的調整。 最後，在「夢想修訂與未來規劃」階段，父母專注於未來的準備、食物與孩子人 生規劃。本研究在理論貢獻上，延伸了 Lutz 等人(2012)在 Adaptation Journey 的討論話題與情感表達。在實務貢獻上，本結果有助於大眾進一步理解自閉症孩 童，幫助新自閉症孩童父母提早認識並能更好的應對育兒過程。 zh_TW dc.description.abstract (摘要) Parents of children with Autism Spectrum Disorder (ASD) face lifelong challenges, with online health communities (OHC) becoming a crucial source of support. However, the literature has rarely delved into the long-term discussions and emotions of these parents within such communities. This study aims to explore the relationship between discussion topics and emotional expression, focusing on the Autism Parenting subreddit. Using netnography, I observed and collected 3,843 posts as archival data, employing natural language processing to assist content analysis. The results revealed that during the "Initial Inquiry" stage following diagnosis, parents actively participated in OHCs, seeking specific methods to improve their child's symptoms. As they entered the "Psychological Struggles and Social Isolation" stage, discussions centered on emotional meltdowns triggered by children's language development, diet, and family impact. In the "Identity Formation and Role Adjustment" stage, parents showed a readiness to accept ASD and make changes, focusing discussions on daily life adjustments. Finally, in the "Dream Revision and Future Planning" stage, parents concentrated on future preparation, food, and life planning for their children. Theoretically, this study extends the discussion topics and emotional expressions in Lutz et al.'s (2012) Adaptation Journey. Practically, these findings contribute to a deeper understanding of ASD children and help new ASD parents better prepare for and cope with the parenting journey. en_US dc.description.tableofcontents ACKNOWLEDGEMENTS I ABSTRACT II 摘要 IV CHAPTER 1: INTRODUCTION 1 CHAPTER 2: LITERATURE REVIEW 4 2.1 OHCs for Patients and Caregivers of Children with ASD 4 2.2 The Adaptation Journey of Parenting Children with ASD 8 CHAPTER 3: RESEARCH METHODS 14 3.1 Netnography 14 3.2 Data Collection 15 3.3 Data Analysis . 17 3.3.1 NLP-based Content Analysis 20 3.3.2 Social Network Analysis 25 CHAPTER 4: RESEARCH FINDINGS 27 4.1 Discussion topics through the adaptation journey 27 4.2 Emotions Expressions under Topics in Different Stages 40 CHAPTER 5: DISCUSSION 48 5.1 Theoretical Contributions 49 5.2 Practical Contributions 51 5.3 Research Limitations and Future Directions 52 REFERENCE 53 zh_TW dc.format.extent 2510564 bytes - dc.format.mimetype application/pdf - dc.source.uri (資料來源) http://thesis.lib.nccu.edu.tw/record/#G0111356029 en_US dc.subject (關鍵詞) 線上健康社群 zh_TW dc.subject (關鍵詞) 自閉症 zh_TW dc.subject (關鍵詞) 照護者 zh_TW dc.subject (關鍵詞) 討論話題 zh_TW dc.subject (關鍵詞) 情緒表達 zh_TW dc.subject (關鍵詞) 網路民族誌 zh_TW dc.subject (關鍵詞) Online health communities en_US dc.subject (關鍵詞) Autism Spectrum Disorder en_US dc.subject (關鍵詞) Caregivers en_US dc.subject (關鍵詞) Discussion topics en_US dc.subject (關鍵詞) Emotional expressions en_US dc.subject (關鍵詞) Netnography en_US dc.title (題名) 自閉症兒童父母線上社群的資訊搜尋與情緒表達:網路民族誌研究 zh_TW dc.title (題名) Information seeking and emotional expression among parents of children with Autism Spectrum Disorder: A netnographic study of an online health community en_US dc.type (資料類型) thesis en_US dc.relation.reference (參考文獻) Addeo, F., Paoli, A. D., Esposito, M., & Bolcato, M. Y. (2019). Doing social research on online communities: The benefits of netnography. Athens journal of social sciences, 7(1), 9-38. Allen, C., Vassilev, I., Kennedy, A., & Rogers, A. (2016). Long-Term Condition Self- Management Support in Online Communities: A Meta-Synthesis of Qualitative Papers. Journal of Medical Internet Research, 18(3), e61. doi:10.2196/jmir.5260 American Psychiatric Association, DSM-5 Task Force. (2013). Diagnostic and statistical manual of mental disorders: DSM-5TM (5th ed.). American Psychiatric Publishing, Inc Autism Task Force, Department of Public Welfare. (2004). Autism Task Force Final Report. Office of the Secretary, Health and Welfare Building, Commonwealth of Pennsylvania. Retrieved from https://mccordlibrary.org/wp- content/uploads/2018/06/pa-dep-welfare-autism-task-force-2004-352pgs.pdf Barak, A., Boniel-Nissim, M., & Suler, J. (2008). Fostering empowerment in online support groups. Computers in human behavior, 24(5), 1867-1883 Barlow, D. H. (2004). Anxiety and its disorders: The nature and treatment of anxiety and panic. Guilford Press, New York Bender, J. L., Jimenez-Marroquin, M. C., Ferris, L. E., Katz, J., & Jadad, A. R. (2013). Online communities for breast cancer survivors: a review and analysis of their characteristics and levels of use. Supportive Care in Cancer, 21, 1253-1263. Brown, B. (2006). Shame resilience theory: A grounded theory study on women and shame. Families in Society, 87(1), 43-52. Cardinal, D. N., Griffiths, A. J., Maupin, Z. D., & Fraumeni‐McBride, J. (2021). An investigation of increased rates of autism in US public schools. Psychology in the Schools, 58(1), 124-140. 53 Chmiel, A., Sienkiewicz, J., Thelwall, M., Paltoglou, G., Buckley, K., Kappas, A., & Hołyst, J. A. (2011). Collective emotions online and their influence on community life. PLOS ONE, 6(7), e22207. Dahlqvist, C. and Persson, C. (2023), “Cognitive appraisals and information-seeking achievement emotions: a qualitative study of Swedish primary teacher students”, Journal of Documentation, Vol. 79 No. 7, pp. 280-307. https://doi.org/10.1108/JD-05-2023-0100 de Jong Gierveld, J. (1998). A review of loneliness: concept and definitions, determinants and consequences. Reviews in clinical gerontology, 8(1), 73-80. Estes, A., Munson, J., Dawson, G., Koehler, E., Zhou, X. H., & Abbott, R. (2009). Parenting stress and psychological functioning among mothers of preschool children with autism and developmental delay. Autism, 13(4), 375-387. Hilliard, M. E., Sparling, K. M., Hitchcock, J., Oser, T. K., & Hood, K. K. (2015). The emerging diabetes online community. Current Diabetes Reviews, 11(4), 261- 272. Farrugia, D. (2009). Exploring stigma: medical knowledge and the stigmatisation of parents of children diagnosed with autism spectrum disorder. Sociology of Health & Illness, 31(7), 1011-1027. Goh, J. M., Gao, G. 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