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

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2.	胡红玲. 癫痫患儿父母应对方式、照顾负担及抑郁的相关性研究. 中南大学, 硕士学位论文, 2012.
3.	杨青美. 不同药物与脑电图放电指数对癫痫儿童认知功能的影响. 中国实用神经疾病杂志, 2015, 18(22): 25-26.
4.	王会敏. 癫痫患者的家庭护理与技能教育研究. 中国实用医药, 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, 李杨. 以家庭为中心教育干预对癫痫患儿父母疾病认知及管理能力的影响. 护理学杂志, 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.	刘花艳, 朱丽辉, 熊亮, 等. 106 例癫痫患儿的家庭管理现状及影响因素分析. 护理学报, 2017, 24(16): 26-30.
10.	朱翠平. 基于微信平台的延续护理在癫痫儿童及家长中的干预研究. 青岛大学, 硕士学位论文, 2019.
11.	卞荆晶, 朱丹, 胡露红. 以家庭为中心护理模式在造口患儿中的应用研究. 护理学杂志, 2014, 29(16): 4-6.
12.	陈劫, 赵锦. 肠造口患儿造口周围皮肤损伤现状及影响因素调查. 护理学杂志, 2017, 32(20): 36-39.
13.	李光大. 医患关系失谐及其缓解浅谈. 民营科技, 2017, 4(2): 228.
14.	李德生, 周秀丽, 王芳, 曹辰杰. 癫痫患者对自身疾病的认知情况及生活质量调查. 中国实用神经疾病杂志, 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.	范宏业. 新诊断癫痫儿童药物治疗后发作和缓解的相关因素研究. 郑州大学, 硕士学位论文, 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, 张萌. 癫痫儿童父母疾病不确定感与照顾能力的关系分析. 临床护理杂志, 2019, 18(5): 65-67.
23.	马梅, 惠沼沼, 张月, 等. 癫痫患儿主要照护者负担与社会支持的相关性研究. 解放军护理杂志, 2018, 35(2): 25-29.
24.	刘秀静, 纪鑫, 高俊芳, 等. 慢性病患儿照顾者照顾负担及影响因素的研究进展. 全科护理, 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. 中国抗癫痫协会. 临床诊疗指南: 癫痫病分册. 2015修订版, 人民卫生出版社, 2015: 11, 14, 16, 30, 48-69, 131.
2. 胡红玲. 癫痫患儿父母应对方式、照顾负担及抑郁的相关性研究. 中南大学, 硕士学位论文, 2012.
3. 杨青美. 不同药物与脑电图放电指数对癫痫儿童认知功能的影响. 中国实用神经疾病杂志, 2015, 18(22): 25-26.
4. 王会敏. 癫痫患者的家庭护理与技能教育研究. 中国实用医药, 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, 李杨. 以家庭为中心教育干预对癫痫患儿父母疾病认知及管理能力的影响. 护理学杂志, 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. 刘花艳, 朱丽辉, 熊亮, 等. 106 例癫痫患儿的家庭管理现状及影响因素分析. 护理学报, 2017, 24(16): 26-30.
10. 朱翠平. 基于微信平台的延续护理在癫痫儿童及家长中的干预研究. 青岛大学, 硕士学位论文, 2019.
11. 卞荆晶, 朱丹, 胡露红. 以家庭为中心护理模式在造口患儿中的应用研究. 护理学杂志, 2014, 29(16): 4-6.
12. 陈劫, 赵锦. 肠造口患儿造口周围皮肤损伤现状及影响因素调查. 护理学杂志, 2017, 32(20): 36-39.
13. 李光大. 医患关系失谐及其缓解浅谈. 民营科技, 2017, 4(2): 228.
14. 李德生, 周秀丽, 王芳, 曹辰杰. 癫痫患者对自身疾病的认知情况及生活质量调查. 中国实用神经疾病杂志, 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. 范宏业. 新诊断癫痫儿童药物治疗后发作和缓解的相关因素研究. 郑州大学, 硕士学位论文, 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, 张萌. 癫痫儿童父母疾病不确定感与照顾能力的关系分析. 临床护理杂志, 2019, 18(5): 65-67.
23. 马梅, 惠沼沼, 张月, 等. 癫痫患儿主要照护者负担与社会支持的相关性研究. 解放军护理杂志, 2018, 35(2): 25-29.
24. 刘秀静, 纪鑫, 高俊芳, 等. 慢性病患儿照顾者照顾负担及影响因素的研究进展. 全科护理, 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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