Study on the home care experience of parents of children with epilepsy in a hospital in Henan Province_Journal of Epilepsy

Authors：

WU Yuanyuan ¹ , MENG Jie ¹ , YU Zijuan ² , GONG Gaoyun ¹ , LIU Fen ¹ ,  ZHANG Yan ³

1. Children's Hospital Affiliated to Zhengzhou University (Zhengzhou Children's Hospital), Zhengzhou 450053, China;
2. Xuanwu Hospital of Capital Medical University, Beijing 100053, China;
3. School of Nursing and Health, Zhengzhou University, Zhengzhou 450001, China;

Corresponding?author：

ZHANG Yan, Email: zhangyanmy@126.com

Keywords：

Epilepsy; Care ability; Home care

DOI：

10.7507/2096-0247.20200051

Video：

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Objective To deeply discuss the home care experience of parents of children with epilepsy, analyzed the current status of care ability and the real influencing factors, and provide a basis to improve their care ability.Methods Descriptive research was used to conduct in-depth interviews with parents of 14 children with epilepsy who were admitted to the Children's Hospital of Zhengzhou University from December 2019 to January 2020, and data analysis was performed by using the generic analysis method.Results The home care experience of parents of children with epilepsy includes four themes: weak nursing ability, physical and mental fatigue, weak support system, and expectation of medical professional support.Conclusion Medical staffs should combine the needs of parents of children with epilepsy and the influencing factors of care ability to carry out health education guidance of online and offline epilepsy knowledge and care skills to improve their care ability.

Citation： WU Yuanyuan, MENG Jie, YU Zijuan, GONG Gaoyun, LIU Fen, ZHANG Yan. Study on the home care experience of parents of children with epilepsy in a hospital in Henan Province. Journal of Epilepsy, 2020, 6(4): 320-324. doi: 10.7507/2096-0247.20200051 Copy

1.	中國抗癲癇協會. 臨床診療指南: 癲癇病分冊. 2015修訂版, 人民衛生出版社, 2015: 11, 14, 16, 30, 48-69, 131.
2.	胡紅玲. 癲癇患兒父母應對方式、照顧負擔及抑郁的相關性研究. 中南大學, 碩士學位論文, 2012.
3.	楊青美. 不同藥物與腦電圖放電指數對癲癇兒童認知功能的影響. 中國實用神經疾病雜志, 2015, 18(22): 25-26.
4.	王會敏. 癲癇患者的家庭護理與技能教育研究. 中國實用醫藥, 2012, 7(32): 260-261.
5.	Modi ACt Rausch J R, Glauser TA. Early pediatric antiepileptic drug nonadherence is related to lower long-term seizure freedom. Neurology, 2014, 82(4): 671-673.
6.	Efficacy of an Innovative Adherence Intervention for Children With Newly Diagnosed Epilepsy. Efficacy of an Innovative Adherence Intervention for Children With Newly Diagnosed Epilepsy. Journal of Pediatric Psychology, 2013, 38(6): 605-616.
7.	王英杰, 李楊. 以家庭為中心教育干預對癲癇患兒父母疾病認知及管理能力的影響. 護理學雜志, 2018, 33(1): 86-88.
8.	Berg AT, Berkovic SF, Brodie MJ., et al Revised terminology and concepts for organization of seizures and epilepsies: report of the ILAE Commission on Classification and Terminology, 2005-2009. Epilepsia, 2010, 51(4): 676-685.
9.	劉花艷, 朱麗輝, 熊亮, 等. 106 例癲癇患兒的家庭管理現狀及影響因素分析. 護理學報, 2017, 24(16): 26-30.
10.	朱翠平. 基于微信平臺的延續護理在癲癇兒童及家長中的干預研究. 青島大學, 碩士學位論文, 2019.
11.	卞荊晶, 朱丹, 胡露紅. 以家庭為中心護理模式在造口患兒中的應用研究. 護理學雜志, 2014, 29(16): 4-6.
12.	陳劫, 趙錦. 腸造口患兒造口周圍皮膚損傷現狀及影響因素調查. 護理學雜志, 2017, 32(20): 36-39.
13.	李光大. 醫患關系失諧及其緩解淺談. 民營科技, 2017, 4(2): 228.
14.	李德生, 周秀麗, 王芳, 曹辰杰. 癲癇患者對自身疾病的認知情況及生活質量調查. 中國實用神經疾病雜志, 2014, 17(5): 39-40.
15.	Reilly C, Taft C, Nelander M, et al. Health-related quality of life and emotional well-being in parents of children with epilepsy referred for presurgical evaluation in Sweden. Epilepsy & Behavior, 2015, 53: 10-14.
16.	Davila-Avila NM, Delgado-Del MJ, Candia-Plata MC, et al. Health-related quality of life in children with epilepsy in a Mexican hospital. Rev Neurol, 2014, 59(2): 63-70.
17.	Reilly C, Atkinson P, Memon A, et al. Symptoms of depression, anxiety, and stress in parents of young children with epilepsy: A case controlled population-based study. Epilepsy & Behavior, 2018, 80: 177-183.
18.	Reilly C, Taft C, Edelvik A, et al. Health-related quality of life and emotional wellbeing improve in parents after their children have undergone epilepsy surgery - A prospective population-based study. Epilepsy & Behavior, 2017, 75: 196-202.
19.	范宏業. 新診斷癲癇兒童藥物治療后發作和緩解的相關因素研究. 鄭州大學, 碩士學位論文, 2016.
20.	Zhao J, Shen KL, Xiang L, et al. The knowledge, attitudes and practices of parents of children with asthma in 29 cities of China: a multi-center study. BMC Pediatrics, 2013, 13(1): 1-6.
21.	Brigham EL, Goldenberg L, Stolfi A, et al. Associations between parental healthliteracy, use of asthma manage-mentplans, and child’s asthma control. Clin Pediatr (Phila), 2016, 55(2): 111-117.
22.	王娜, 張萌. 癲癇兒童父母疾病不確定感與照顧能力的關系分析. 臨床護理雜志, 2019, 18(5): 65-67.
23.	馬梅, 惠沼沼, 張月, 等. 癲癇患兒主要照護者負擔與社會支持的相關性研究. 解放軍護理雜志, 2018, 35(2): 25-29.
24.	劉秀靜, 紀鑫, 高俊芳, 等. 慢性病患兒照顧者照顧負擔及影響因素的研究進展. 全科護理, 2017, 15(22): 2713-2715.
25.	DeVylder JE, Gearing RE. Declining social support in adolescents prior to first episode psychosis: Associations with negative and affective symptoms. Psychiatry Research, 2013, 210(1): 50-54.

1. 中國抗癲癇協會. 臨床診療指南: 癲癇病分冊. 2015修訂版, 人民衛生出版社, 2015: 11, 14, 16, 30, 48-69, 131.
2. 胡紅玲. 癲癇患兒父母應對方式、照顧負擔及抑郁的相關性研究. 中南大學, 碩士學位論文, 2012.
3. 楊青美. 不同藥物與腦電圖放電指數對癲癇兒童認知功能的影響. 中國實用神經疾病雜志, 2015, 18(22): 25-26.
4. 王會敏. 癲癇患者的家庭護理與技能教育研究. 中國實用醫藥, 2012, 7(32): 260-261.
5. Modi ACt Rausch J R, Glauser TA. Early pediatric antiepileptic drug nonadherence is related to lower long-term seizure freedom. Neurology, 2014, 82(4): 671-673.
6. Efficacy of an Innovative Adherence Intervention for Children With Newly Diagnosed Epilepsy. Efficacy of an Innovative Adherence Intervention for Children With Newly Diagnosed Epilepsy. Journal of Pediatric Psychology, 2013, 38(6): 605-616.
7. 王英杰, 李楊. 以家庭為中心教育干預對癲癇患兒父母疾病認知及管理能力的影響. 護理學雜志, 2018, 33(1): 86-88.
8. Berg AT, Berkovic SF, Brodie MJ., et al Revised terminology and concepts for organization of seizures and epilepsies: report of the ILAE Commission on Classification and Terminology, 2005-2009. Epilepsia, 2010, 51(4): 676-685.
9. 劉花艷, 朱麗輝, 熊亮, 等. 106 例癲癇患兒的家庭管理現狀及影響因素分析. 護理學報, 2017, 24(16): 26-30.
10. 朱翠平. 基于微信平臺的延續護理在癲癇兒童及家長中的干預研究. 青島大學, 碩士學位論文, 2019.
11. 卞荊晶, 朱丹, 胡露紅. 以家庭為中心護理模式在造口患兒中的應用研究. 護理學雜志, 2014, 29(16): 4-6.
12. 陳劫, 趙錦. 腸造口患兒造口周圍皮膚損傷現狀及影響因素調查. 護理學雜志, 2017, 32(20): 36-39.
13. 李光大. 醫患關系失諧及其緩解淺談. 民營科技, 2017, 4(2): 228.
14. 李德生, 周秀麗, 王芳, 曹辰杰. 癲癇患者對自身疾病的認知情況及生活質量調查. 中國實用神經疾病雜志, 2014, 17(5): 39-40.
15. Reilly C, Taft C, Nelander M, et al. Health-related quality of life and emotional well-being in parents of children with epilepsy referred for presurgical evaluation in Sweden. Epilepsy & Behavior, 2015, 53: 10-14.
16. Davila-Avila NM, Delgado-Del MJ, Candia-Plata MC, et al. Health-related quality of life in children with epilepsy in a Mexican hospital. Rev Neurol, 2014, 59(2): 63-70.
17. Reilly C, Atkinson P, Memon A, et al. Symptoms of depression, anxiety, and stress in parents of young children with epilepsy: A case controlled population-based study. Epilepsy & Behavior, 2018, 80: 177-183.
18. Reilly C, Taft C, Edelvik A, et al. Health-related quality of life and emotional wellbeing improve in parents after their children have undergone epilepsy surgery - A prospective population-based study. Epilepsy & Behavior, 2017, 75: 196-202.
19. 范宏業. 新診斷癲癇兒童藥物治療后發作和緩解的相關因素研究. 鄭州大學, 碩士學位論文, 2016.
20. Zhao J, Shen KL, Xiang L, et al. The knowledge, attitudes and practices of parents of children with asthma in 29 cities of China: a multi-center study. BMC Pediatrics, 2013, 13(1): 1-6.
21. Brigham EL, Goldenberg L, Stolfi A, et al. Associations between parental healthliteracy, use of asthma manage-mentplans, and child’s asthma control. Clin Pediatr (Phila), 2016, 55(2): 111-117.
22. 王娜, 張萌. 癲癇兒童父母疾病不確定感與照顧能力的關系分析. 臨床護理雜志, 2019, 18(5): 65-67.
23. 馬梅, 惠沼沼, 張月, 等. 癲癇患兒主要照護者負擔與社會支持的相關性研究. 解放軍護理雜志, 2018, 35(2): 25-29.
24. 劉秀靜, 紀鑫, 高俊芳, 等. 慢性病患兒照顧者照顧負擔及影響因素的研究進展. 全科護理, 2017, 15(22): 2713-2715.
25. DeVylder JE, Gearing RE. Declining social support in adolescents prior to first episode psychosis: Associations with negative and affective symptoms. Psychiatry Research, 2013, 210(1): 50-54.

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Study on the home care experience of parents of children with epilepsy in a hospital in Henan Province

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