中华护理杂志 ›› 2021, Vol. 56 ›› Issue (1): 86-90.DOI: 10.3761/j.issn.0254-1769.2021.01.014
蔡立柏(
),刘延锦(
),孙箫音,杜若飞,郭园丽,王爱霞,崔妙然
收稿日期:2020-01-26
出版日期:2021-01-15
发布日期:2021-01-15
通讯作者:
作者简介:蔡立柏:男,硕士,主管护师, E-mail:
CAI Libai(
),LIU Yanjin(
),SUN Xiaoyin,DU Ruofei,GUO Yuanli,WANG Aixia,CUI Miaoran
Received:2020-01-26
Online:2021-01-15
Published:2021-01-15
摘要:
目的 了解青少年癫痫患者的疾病感受和体验,旨在为青少年癫痫患者护理干预策略的制订提供参考依据。 方法 采用现象学研究法,选取2019年10月—12月在郑州市某三级甲等综合医院住院的13例青少年癫痫患者,对其进行半结构式深入访谈,并采用Colaizzi 7步分析法对访谈资料进行分析、归纳及提炼主题。结果 青少年癫痫患者的疾病感受和体验可归纳为4个主题:①疾病自我管理能力不足;②生活质量下降;③自我感受负担明显;④期待理解与社会支持。 结论 青少年癫痫患者在生理、心理、社会等方面存在诸多负担和需求,护士应密切关注此类患者的情绪反应和心理感受,给予有针对性的心理疏导和多维度的社会支持。
蔡立柏,刘延锦,孙箫音,杜若飞,郭园丽,王爱霞,崔妙然. 青少年癫痫患者疾病感受和体验的质性研究[J]. 中华护理杂志, 2021, 56(1): 86-90.
CAI Libai,LIU Yanjin,SUN Xiaoyin,DU Ruofei,GUO Yuanli,WANG Aixia,CUI Miaoran. A qualitative research on perceptions and experience of adolescents with epilepsy[J]. Chinese Journal of Nursing, 2021, 56(1): 86-90.
| [1] |
Moshé SL, Perucca E, Ryvlin P, et al. Epilepsy:new advances[J]. Lancet, 2015,385(9971):884-898.
DOI URL PMID |
| [2] | 刘鑫桐, 于盼盼, 孙觊, 等. 癫痫发生过程中免疫学相关机制的研究进展[J]. 中风与神经疾病杂志, 2017,34(2):179-182. |
| Liu XT, Yu PP, Sun J, et al. Research progress of immunology related mechanism in epilepsy[J]. J Apoplexy Nerv Dis, 2017,34(2):179-182. | |
| [3] | 周春闽, 王志坚, 李凌恩. 青少年癫痫患者精神心理障碍的发生及影响因素分析[J]. 创伤与急诊电子杂志, 2017,5(3):118-123. |
| Zhou CM, Wang ZJ, Li LE. Analysis of occurrence of mental disorder and its influencing factors in adolescent patients with epilepsy[J]. J Trauma Emerg Electron Version, 2017,5(3):118-123. | |
| [4] | 王英杰, 李杨. 以家庭为中心的教育干预对活动性癫痫患儿服药依从性及健康状况的影响[J]. 中华护理杂志, 2015,50(10):1157-1162. |
| 王英杰, 李杨. 以家庭为中心的教育干预对活动性癫痫患儿服药依从性及健康状况的影响[J]. 中华护理杂志, 2015,50(10):1157-1162. | |
| Wang YJ, Li Y. Effects of family-centered educational intervention on adolescents with active epilepsy[J]. Chin J Nurs, 2015,50(10):1157-1162. | |
| Wang YJ, Li Y. Effects of family-centered educational intervention on adolescents with active epilepsy[J]. Chin J Nurs, 2015,50(10):1157-1162. | |
| [5] |
Rosenberg EC, Louik J, Conway E, et al. Quality of Life in childhood epilepsy in pediatric patients enrolled in a pros-pective,open-label clinical study with cannabidiol[J]. Epilepsia, 2017,58(8):e96-e100.
DOI URL PMID |
|
Rosenberg EC, Louik J, Conway E, et al. Quality of Life in childhood epilepsy in pediatric patients enrolled in a pros-pective,open-label clinical study with cannabidiol[J]. Epilepsia, 2017,58(8):e96-e100.
DOI URL PMID |
|
| [6] | 郝硕彦, 陈颖, 董万惠. 难治性癫痫患者照顾者照顾体验的质性研究[J]. 中国实用护理杂志, 2015,31(8):606-608. |
| 郝硕彦, 陈颖, 董万惠. 难治性癫痫患者照顾者照顾体验的质性研究[J]. 中国实用护理杂志, 2015,31(8):606-608. | |
| Hao SY, Chen Y, Dong WH. A qualitative study on the caring experience of caregivers of patients with refractory epilepsy[J]. Chin J Pract Nurs, 2015,31(8):606-608. | |
| Hao SY, Chen Y, Dong WH. A qualitative study on the caring experience of caregivers of patients with refractory epilepsy[J]. Chin J Pract Nurs, 2015,31(8):606-608. | |
| [7] | 吴俊俞. 癫痫患儿直接照顾者照顾感受的质性研究[J]. 中华护理杂志, 2013,48(12):1116-1118. |
| 吴俊俞. 癫痫患儿直接照顾者照顾感受的质性研究[J]. 中华护理杂志, 2013,48(12):1116-1118. | |
| Wu JY. A qualitative research on caring experience of epile-psy children’s direct caregivers[J]. Chin J Nurs, 2013,48(12):1116-1118. | |
| Wu JY. A qualitative research on caring experience of epile-psy children’s direct caregivers[J]. Chin J Nurs, 2013,48(12):1116-1118. | |
| [8] | 中国抗癫痫协会. 临床诊疗指南:癫痫病分册[M]. 北京:人民卫生出版社, 2015: 15-16. |
| 中国抗癫痫协会. 临床诊疗指南:癫痫病分册[M]. 北京:人民卫生出版社, 2015: 15-16. | |
| China Association Against Epilepsy. Guidelines for clinical di-agnosis and treatment:epilepsy[M]. Beijing:People’s Medical Publishing House, 2015: 15-16. | |
| China Association Against Epilepsy. Guidelines for clinical di-agnosis and treatment:epilepsy[M]. Beijing:People’s Medical Publishing House, 2015: 15-16. | |
| [9] |
Michaelis R, Niedermann C, Reuber M, et al. “Seizures have become a means of somehow learning things about myself”—a qualitative study of the development of self-efficacy and mastery during a psychotherapeutic intervention for people with epilepsy[J]. Epilepsy Behav, 2018,84:152-161.
DOI URL PMID |
|
Michaelis R, Niedermann C, Reuber M, et al. “Seizures have become a means of somehow learning things about myself”—a qualitative study of the development of self-efficacy and mastery during a psychotherapeutic intervention for people with epilepsy[J]. Epilepsy Behav, 2018,84:152-161.
DOI URL PMID |
|
| [10] | Englander M. The phenomenological method in qualitative psy-chology and psychiatry[J]. Int J Qual Stud Heal Well-Being, 2016,11(1):30682. |
| Englander M. The phenomenological method in qualitative psy-chology and psychiatry[J]. Int J Qual Stud Heal Well-Being, 2016,11(1):30682. | |
| [11] |
Couzin-Frankel J. Epilepsy’s next frontier[J]. Science, 2019,366(6471):1300-1304.
DOI URL PMID |
|
Couzin-Frankel J. Epilepsy’s next frontier[J]. Science, 2019,366(6471):1300-1304.
DOI URL PMID |
|
| [12] |
Frauscher B, Gotman J. Sleep,oscillations,interictal discharges,and seizures in human focal epilepsy[J]. Neurobiol Dis, 2019,127:545-553.
DOI URL PMID |
|
Frauscher B, Gotman J. Sleep,oscillations,interictal discharges,and seizures in human focal epilepsy[J]. Neurobiol Dis, 2019,127:545-553.
DOI URL PMID |
|
| [13] |
Goker Z, Yilmaz A, Eraslan AN, et al. Seizures in children with epilepsy and attention-deficit/hyperactivity disorder[J]. Pediatr Int, 2019,61(10):1043-1047.
DOI URL PMID |
|
Goker Z, Yilmaz A, Eraslan AN, et al. Seizures in children with epilepsy and attention-deficit/hyperactivity disorder[J]. Pediatr Int, 2019,61(10):1043-1047.
DOI URL PMID |
|
| [14] | 张慧敏, 温晓红. 影响癫痫儿童生活质量相关领域的研究概况[J]. 临床儿科杂志, 2018,36(12):954-957. |
| 张慧敏, 温晓红. 影响癫痫儿童生活质量相关领域的研究概况[J]. 临床儿科杂志, 2018,36(12):954-957. | |
| Zhang HM, Wen XH. Overview of research on the life quality in epilepsy children[J]. J Clin Pediatr, 2018,36(12):954-957. | |
| Zhang HM, Wen XH. Overview of research on the life quality in epilepsy children[J]. J Clin Pediatr, 2018,36(12):954-957. | |
| [15] | 王莹莹, 王洪伟, 赵艳玲, 等. 情绪健康及生活质量与癫痫患者自杀的关系[J]. 中国健康心理学杂志, 2018,26(4):493-496. |
| 王莹莹, 王洪伟, 赵艳玲, 等. 情绪健康及生活质量与癫痫患者自杀的关系[J]. 中国健康心理学杂志, 2018,26(4):493-496. | |
| Wang YY, Wang HW, Zhao YL, et al. Relationship between emotional health and quality of life and suicide in epileptic patients[J]. Chin J Heal Psychol, 2018,26(4):493-496. | |
| Wang YY, Wang HW, Zhao YL, et al. Relationship between emotional health and quality of life and suicide in epileptic patients[J]. Chin J Heal Psychol, 2018,26(4):493-496. | |
| [16] | 罗浩贤, 符仲芳, 李迪, 等. 灾难化解释对健康焦虑的影响:有调节的中介作用[J]. 中国临床心理学杂志, 2018,26(2):289-293. |
| 罗浩贤, 符仲芳, 李迪, 等. 灾难化解释对健康焦虑的影响:有调节的中介作用[J]. 中国临床心理学杂志, 2018,26(2):289-293. | |
| Luo HX, Fu ZF, Li D, et al. Catastrophic misinterpretation and health anxiety:a moderated mediating effect[J]. Chin J Clin Psychol, 2018,26(2):289-293. | |
| Luo HX, Fu ZF, Li D, et al. Catastrophic misinterpretation and health anxiety:a moderated mediating effect[J]. Chin J Clin Psychol, 2018,26(2):289-293. | |
| [17] | Chew J, Carpenter J, Haase AM. Living with epilepsy in adolescence—a qualitative study of young people’s experiences in Singapore:peer socialization,autonomy,and self-esteem[J]. Child:Care Heal Dev, 2019,45(2):241-250. |
| Chew J, Carpenter J, Haase AM. Living with epilepsy in adolescence—a qualitative study of young people’s experiences in Singapore:peer socialization,autonomy,and self-esteem[J]. Child:Care Heal Dev, 2019,45(2):241-250. | |
| [18] |
Greenshields S. An introduction to nursing children and young people with epilepsy[J]. Br J Nurs, 2019,28(17):1115-1117.
DOI URL PMID |
|
Greenshields S. An introduction to nursing children and young people with epilepsy[J]. Br J Nurs, 2019,28(17):1115-1117.
DOI URL PMID |
|
| [19] | 何珊. 服药提醒APP的开发及其提高服药依从性的研究[D]. 合肥:安徽医科大学, 2017. |
| 何珊. 服药提醒APP的开发及其提高服药依从性的研究[D]. 合肥:安徽医科大学, 2017. | |
| He S. Development of a medication reminder and research on the improvement of medication compliance[D]. >Hefei:Anhui Medical University, 2017. | |
| He S. Development of a medication reminder and research on the improvement of medication compliance[D]. >Hefei:Anhui Medical University, 2017. | |
| [20] | 薄琳, 王乾贝, 郑颖, 等. 以癫痫日记APP为主导的远程干预在青少年癫痫病人中的应用[J]. 护理研究, 2019,33(22):3964-3968. |
| 薄琳, 王乾贝, 郑颖, 等. 以癫痫日记APP为主导的远程干预在青少年癫痫病人中的应用[J]. 护理研究, 2019,33(22):3964-3968. | |
| Bo L, Wang QB, Zheng Y, et al. Application of remote intervention led by epilepsy diary APP in adolescent patients with epilepsy[J]. Nurs Res, 2019,33(22):3964-3968. | |
| Bo L, Wang QB, Zheng Y, et al. Application of remote intervention led by epilepsy diary APP in adolescent patients with epilepsy[J]. Nurs Res, 2019,33(22):3964-3968. | |
| [21] |
Riechmann J, Willems LM, Boor R, et al. Quality of life and correlating factors in children,adolescents with epilepsy,and their caregivers:a cross-sectional multicenter study from Germany[J]. Seizure, 2019,69:92-98.
DOI URL PMID |
|
Riechmann J, Willems LM, Boor R, et al. Quality of life and correlating factors in children,adolescents with epilepsy,and their caregivers:a cross-sectional multicenter study from Germany[J]. Seizure, 2019,69:92-98.
DOI URL PMID |
|
| [22] |
Tedrus GMAS, Sterca GS, Pereira RB. Physical activity,stigma,and quality of life in patients with epilepsy[J]. Epilepsy Behav, 2017,77:96-98.
DOI URL PMID |
|
Tedrus GMAS, Sterca GS, Pereira RB. Physical activity,stigma,and quality of life in patients with epilepsy[J]. Epilepsy Behav, 2017,77:96-98.
DOI URL PMID |
|
| [23] |
Khalid Z, Momotaz H, Briggs F, et al. Depressive symptoms in older versus younger people with epilepsy:findings from an integrated epilepsy self-management clinical research dataset[J]. J Multidiscip Healthc, 2019,12:981-988.
DOI URL PMID |
|
Khalid Z, Momotaz H, Briggs F, et al. Depressive symptoms in older versus younger people with epilepsy:findings from an integrated epilepsy self-management clinical research dataset[J]. J Multidiscip Healthc, 2019,12:981-988.
DOI URL PMID |
|
| [24] | 宋杰, 李真, 许阳, 等. 癫痫患者羞耻感现状调查及影响因素分析[J]. 中华护理杂志, 2016,51(1):40-44. |
| 宋杰, 李真, 许阳, 等. 癫痫患者羞耻感现状调查及影响因素分析[J]. 中华护理杂志, 2016,51(1):40-44. | |
| Song J, Li Z, Xu Y, et al. The level and influence factors of stigma in people living with epilepsy[J]. Chin J Nurs, 2016,51(1):40-44. | |
| Song J, Li Z, Xu Y, et al. The level and influence factors of stigma in people living with epilepsy[J]. Chin J Nurs, 2016,51(1):40-44. | |
| [25] | 刘花艳, 谷利凤, 朱丽辉, 等. 癫痫患儿家庭管理干预的效果研究[J]. 中华护理杂志, 2017,52(10):1157-1162. |
| 刘花艳, 谷利凤, 朱丽辉, 等. 癫痫患儿家庭管理干预的效果研究[J]. 中华护理杂志, 2017,52(10):1157-1162. | |
| Liu HY, Gu LF, Zhu LH, et al. Effectiveness of family management on improvement of management level for families with epilepsy children[J]. Chin J Nurs, 2017,52(10):1157-1162. | |
| Liu HY, Gu LF, Zhu LH, et al. Effectiveness of family management on improvement of management level for families with epilepsy children[J]. Chin J Nurs, 2017,52(10):1157-1162. |
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