Real experience of fertility in decision-making:a qualitative study of reproductive-age women with epilepsy_Journal of Epilepsy

Authors：

QIN Xueyin , WANG Wenshuang , GU Jingjing ,  LI Qian

Epilepsy Center, Beijing Tiantan Hospital, Capital Medical University, Beijing 100070, China;

Corresponding?author：

LI Qian, Email: lqttyy@163.com

Keywords：

Epilepsy; Childbearing age; Fertility decision-making; Real experience; Qualitative research

DOI：

10.7507/2096-0247.202503012

Video：

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Objective To explore the real experiences of women of childbearing age with epilepsy during their reproductive decision-making process, and to provide a basis for clinical practitioners in managing the reproductive decision-making of this group of women and implementing decision support. Methods Sixteen women of childbearing age with epilepsy who were hospitalized in the Epilepsy Center of Beijing Tiantan Hospital, Capital Medical Universityi in Beijing from April 2024 to June 2024 were selected through purposive sampling. The Colaizzi phenomenological data analysis method was employed, and the data were organized and analyzed with the aid of Nvivo 11.0 software to extract themes. Results Three themes and eight sub-themes were extracted: The majority of patients had reproductive demands (personal role expectations, family and social pressure), Uncertainties in reproductive behaviors and outcomes (uncertainties in the pregnancy process caused by the disease, uncertainties in the reproductive outcome caused by the disease), and Encountering reproductive decision-making predicaments (lack of professional knowledge, conflicting information from different channels, multiple factors influencing reproductive decision-making, and various negative experiences associated with decision-making). Conclusion The majority of women of childbearing age with epilepsy have reproductive needs and encounter decision-making predicaments. Medical staff should pay attention to their true experiences, offer adequate support and assistance, and help patients extricate themselves from the decision-making predicament to make scientific and rational decisions.

Citation： QIN Xueyin, WANG Wenshuang, GU Jingjing, LI Qian. Real experience of fertility in decision-making:a qualitative study of reproductive-age women with epilepsy. Journal of Epilepsy, 2025, 11(5): 425-429. doi: 10.7507/2096-0247.202503012 Copy

1.	中華醫學會神經病學分會, 中華醫學會神經病學分會腦電圖與癲癇學組. 中國成人局灶性癲癇規范化診治指南. 中華神經科雜志, 2022, 55(12): 1341-1352.
2.	王玉平, 高樂虹. 重視圍妊娠期癲癇患者的規范化管理. 中華神經科雜志, 2021, 54(6): 535-538.
3.	Leinonen MK, Igland J, Dreier JW, et al. Socioeconomic differences in use of antiseizure medication in pregnancies with maternal epilepsy: a population-based study from Nordic universal health care systems. Epilepsia, 2024, 65(8): 2397-2411.
4.	Miao Q, Zai G, Joiner I, et al. Associations between mental health conditions in pregnancy and maternal socioeconomic status: a population-based retrospective cohort study in Ontario, Canada. BMC Womens Health, 2024, 24(1): 663.
5.	Fisher RS , Cross JH , French JA , et al. Operational classification of seizure types by the International League Against Epilepsy: position paper of the ILAE Commission for Classification and Terminology. Epilepsia, 2017, 58(4): 522-530.
6.	中國抗癲癇協會. 臨床診療指南: 癲癇病分冊. 北京: 人民衛生出版社, 2015.
7.	劉明. Colaizzi 七個步驟在現象學研究資料分析中的應用. 護理學雜志, 2019, 34(11): 90-92.
8.	中華醫學會神經病學分會腦電圖與癲癇學組. 中國圍妊娠期女性癲癇患者管理指南. 中華神經科雜志, 2021, 54(6): 539-544.
9.	Li Q, Cao Y, Zhang J, et al. Pregnancy-related knowledge in women with epilepsy in childbearing age: a pilot questionnaire survey from China. Brain Behav, 2024, 14(2): e3400.
10.	董瑩, 莊歡, 房鈺, 等. 育齡期癌癥患者生育力保存決策動機研究進展. 中國護理管理, 2024, 24(6): 952-956.
11.	邢乃芳, 姚丹, 王璐杉, 等. 育齡期女性乳腺癌患者生育決策真實體驗的Meta整合. 中國護理管理, 2023, 23(5): 719-724.
12.	朱彩云, 金鳳娟, 胡閩閩, 等. 我國孕婦妊娠期壓力研究現狀. 中華全科醫學, 2020, 18(8): 1353-1357.
13.	Stephen LJ, Harden C, Tomson T, et al. Management of epilepsy in women. Lancet Neurol, 2019, 18(5): 481-491.
14.	梁嘉寧. 中國家庭生育影響因素研究. 吉林大學, 博士學位論文, 2023.
15.	Moores G, Liu K, Pikula A, et al. Fertility treatment for people with epilepsy. Pract Neurol, 2024, 24(4): 296-301.
16.	Kirkpatrick L, Harrison E, Borrero S, et al. Sexual and reproductive health concerns of women with epilepsy beginning in adolescence and young adulthood. Epilepsy Behav, 2021, 125: 108439.
17.	Li Y, Meador KJ. Epilepsy and pregnancy. Continuum (Minneap Minn), 2022, 28(1): 34-54.
18.	Menon S, Siewe Fodjo JN, Weckhuysen S, et al. Women with epilepsy in sub-Saharan Africa: a review of the reproductive health challenges and perspectives for management. Seizure, 2019, 71: 312-317.

1. 中華醫學會神經病學分會, 中華醫學會神經病學分會腦電圖與癲癇學組. 中國成人局灶性癲癇規范化診治指南. 中華神經科雜志, 2022, 55(12): 1341-1352.
2. 王玉平, 高樂虹. 重視圍妊娠期癲癇患者的規范化管理. 中華神經科雜志, 2021, 54(6): 535-538.
3. Leinonen MK, Igland J, Dreier JW, et al. Socioeconomic differences in use of antiseizure medication in pregnancies with maternal epilepsy: a population-based study from Nordic universal health care systems. Epilepsia, 2024, 65(8): 2397-2411.
4. Miao Q, Zai G, Joiner I, et al. Associations between mental health conditions in pregnancy and maternal socioeconomic status: a population-based retrospective cohort study in Ontario, Canada. BMC Womens Health, 2024, 24(1): 663.
5. Fisher RS , Cross JH , French JA , et al. Operational classification of seizure types by the International League Against Epilepsy: position paper of the ILAE Commission for Classification and Terminology. Epilepsia, 2017, 58(4): 522-530.
6. 中國抗癲癇協會. 臨床診療指南: 癲癇病分冊. 北京: 人民衛生出版社, 2015.
7. 劉明. Colaizzi 七個步驟在現象學研究資料分析中的應用. 護理學雜志, 2019, 34(11): 90-92.
8. 中華醫學會神經病學分會腦電圖與癲癇學組. 中國圍妊娠期女性癲癇患者管理指南. 中華神經科雜志, 2021, 54(6): 539-544.
9. Li Q, Cao Y, Zhang J, et al. Pregnancy-related knowledge in women with epilepsy in childbearing age: a pilot questionnaire survey from China. Brain Behav, 2024, 14(2): e3400.
10. 董瑩, 莊歡, 房鈺, 等. 育齡期癌癥患者生育力保存決策動機研究進展. 中國護理管理, 2024, 24(6): 952-956.
11. 邢乃芳, 姚丹, 王璐杉, 等. 育齡期女性乳腺癌患者生育決策真實體驗的Meta整合. 中國護理管理, 2023, 23(5): 719-724.
12. 朱彩云, 金鳳娟, 胡閩閩, 等. 我國孕婦妊娠期壓力研究現狀. 中華全科醫學, 2020, 18(8): 1353-1357.
13. Stephen LJ, Harden C, Tomson T, et al. Management of epilepsy in women. Lancet Neurol, 2019, 18(5): 481-491.
14. 梁嘉寧. 中國家庭生育影響因素研究. 吉林大學, 博士學位論文, 2023.
15. Moores G, Liu K, Pikula A, et al. Fertility treatment for people with epilepsy. Pract Neurol, 2024, 24(4): 296-301.
16. Kirkpatrick L, Harrison E, Borrero S, et al. Sexual and reproductive health concerns of women with epilepsy beginning in adolescence and young adulthood. Epilepsy Behav, 2021, 125: 108439.
17. Li Y, Meador KJ. Epilepsy and pregnancy. Continuum (Minneap Minn), 2022, 28(1): 34-54.
18. Menon S, Siewe Fodjo JN, Weckhuysen S, et al. Women with epilepsy in sub-Saharan Africa: a review of the reproductive health challenges and perspectives for management. Seizure, 2019, 71: 312-317.

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