家长在矮小症患儿激素替代治疗不同阶段体验的质性研究
|
摘要
目的 :以时机理论为框架,探讨家长在矮小症患儿激素替代治疗不同阶段的真实治疗体验。方法 :采用目的抽样法,对在我院接受激素替代治疗的矮小症患儿家长进行半结构式访谈,应用Colaizzi现象学7步分析法分析资料。结果 :归纳出5个主题:确诊时应激反应强烈、治疗期的不同应对态度、出院准备期的失助感、调整期压力应对困难、适应期的复杂情绪与需求。结论 :家长在矮小症患儿激素替代治疗不同阶段的治疗体验是动态变化的,医护人员应根据家长在患儿治疗不同阶段的体验及需求分阶段、有计划、持续性地提供个性化护理,提高治疗的依从性,通过医护患共同合作的模式,促进患儿身心健康成长。
Objective: To discuss and explore the parents' experience in different stages of hormone replacement therapy for their children with short stature based on "Timing It Right". Methods: Patients whose children were receiving hormone replacement therapy for short stature in our hospital were recruited using purposeful sampling and interviewed by semistructured interviews. And the 7-step analysis of Colaizzi phenomenology was applied to analyze data collected during the research. Results: 5 subjects including the stress response being strong in the diagnosis of short statue, different attitudes during the treatment, helplessness when getting prepared to discharge, difficulties in coping with stress in adjustment phase and complex feelings and needs during the adaptation period were summarized. Conclusion: The experience of the parents of children with short stature are changing dynamically. Therefore, medical staff are supposed to provide individualized nursing and treatment according to the experience and needs of parents in different stages of treatment in a planned and continuous manner, and improve the compliance of patients. The continuous nursing mode through integrating medical staff and patients together is conducive to the healthy growth of children physically and mentally.
Objective: To discuss and explore the parents' experience in different stages of hormone replacement therapy for their children with short stature based on "Timing It Right". Methods: Patients whose children were receiving hormone replacement therapy for short stature in our hospital were recruited using purposeful sampling and interviewed by semistructured interviews. And the 7-step analysis of Colaizzi phenomenology was applied to analyze data collected during the research. Results: 5 subjects including the stress response being strong in the diagnosis of short statue, different attitudes during the treatment, helplessness when getting prepared to discharge, difficulties in coping with stress in adjustment phase and complex feelings and needs during the adaptation period were summarized. Conclusion: The experience of the parents of children with short stature are changing dynamically. Therefore, medical staff are supposed to provide individualized nursing and treatment according to the experience and needs of parents in different stages of treatment in a planned and continuous manner, and improve the compliance of patients. The continuous nursing mode through integrating medical staff and patients together is conducive to the healthy growth of children physically and mentally.
引文
[1]中华医学会儿科学分会内分泌遗传代谢学组.矮身材儿童诊治指南.中华医学信息导报,2008,23(24):20-21.Chinese academy of pediatrics endocrine genetics and metabolism. Guidelines for the diagnosis and treatment of short children. China Medical News,2018,23(24):20-21.
[2]陈凌华,赵慧,张素珍,等.矮小症主观生活质量和社会适应能力研究.中国儿童保健杂志,2016,24(12):1271-1273.Chen LH, Zhao H, Zhang SZ, et al. Research on the subjective living quality and the social adaptive behavior in children with short staure.Chinese Gournal of Child Health Care, 2016,24(12):1271-1273.
[3]区远赵,黄诚花,陈秀英,等.重组人生长激素治疗儿童生长激素缺乏症和特发性矮小症的安全性分析.中国实用医药,2017,12(13):87-89.Ou YZ, Huang CH, Chen XY, et a1. Analysis of safety of recombinant human growth hormone in the treatment of growth hormone deficiency and idiopathic short-small syndrome in children.China Practical Medicine, 2017,12(13):87-89.
[4] Cameron JI, Gignac MAM."Timing It Right":a conceptual framework for addressing the support needs of family caregivers to stroke survivors from the hospital to the home. Patient Educ Couns, 2008,70(3):305-314.
[5]徐璇,文捷,彭丹霞,等.采用PEDSQL量表对矮小症儿童的生存质量分析.中国当代儿科杂志,2013,15(10):870-874.Xu X, Wen J, Peng DX, et al. Quality of life in children with short stature:an analysis using PedsQL. Chinese Journal Contemporary Pediatrics, 2013,15(10):870-874.
[6]谢安慰,阐玉英,钮美娥,等.EV71型手足口病合并脑炎患儿母亲照顾体验的质性研究.中国护理管理,2015,15(2):165-167.Xie AW, Chan YY, Niu ME, et al. True experience of the mothers of children with EV71 type HFMD complicatedwithencephalitis:aqualitative research. Chinese Nursing Management, 2015,15(2):165-167.
[7]田银,张春华,周俊辉,等.基于时机理论对1型糖尿病患儿家属不同阶段照护体验的质性研究.护士进修杂志,2015,30(20):1899-1902.Tian Y, Zhang CH, Zhou JH, et al. The caring experiencesoffamilycaregiversofTypeI diabetes survivors in different phases based on"Timing It Right":a qualitative study. Journal of Nurses Training, 2015,30(20):1899-1902.
[8]王珊珊,薛小玲.基于时机理论的家庭护理对急性心肌梗死患者康复效果的研究.中华护理杂志,2017,52(12):1445-1449.Wang SS, Xue XL. Effects of family-centered care based on Timing it Tight on rehabilitation of patients with acute myocardial infarction. Chinese Journal of Nursing, 2017,52(12):1445-1449.
[9]谢安慰,阐玉英,钮美娥,等.学龄期白血病患儿首次PICC置管真实感受的质性研究.解放军护理杂志,2015,32(16):24-27.Xie AW, Chan YY, Niu ME, et al. True experience of school age children with acute leukemia with first time PICC:a qualitative Research. Nursing Journal of Chinese People's Liberation Army,2015,32(16):24-27.
[10]曾冬阳,张彩虹,张华,等.青少年1型糖尿病患儿对疾病认知和体验的质性研究.中国实用护理杂志,2017,33(29):2276-2279.Zeng DY, Zhang CH, Zhang H, et al. A qualitative study on the disease cognition and experience of adolescents with type 1 diabetes. Chinese Journal ofPractical Nursing, 2017,33(29):2276-2279.
[11]韩连书.重组人生长激素在儿童矮小症中的应用.临床儿科杂志,2012,30(12):1191-1192.Han LS. Application of recombinant human growth hormone in children with dwarfism.Journal of Clinical Pediatrics, 2012,30(12):1191-1192.
[12]梁莉莉,张艳,史岩,等.时机理论在疾病护理中的应用研究进展.护理研究,2016,30(2):524-525.Liang LL, Zhang Y, Shi Y, et al. Research progress on application of timing theory in disease nursing.Chinese Nursing Research, 2016,30(2):524-525.
[13]刘文婷,刘燕妮,张知新.北京市儿童保健医生对儿童矮小症知晓情况调查及干预效果评价.中国健康教育,2016,32(5):436-438.Liu WT, Liu YN, Zhang ZX. Study of awareness rate of short stature and effect evaluation of intervention among child health care doctors in Beijing. Chinese Journal of Health Education,2016,32(5):436-438.
[14]姚海波,强梅.矮小身材儿童预防性筛查和临床治疗路径管理方案的探索.中国校医,2017,31(2):87-89.Yao HB, Qiang M. Study on administrative pathway combining preventive screening and clinical practice for short stature children. Chinese Journal of School Doctor, 2017,31(2):87-89.
[15] Stephen MD, Varni JW, Limbers CA. Healthrelated quality of life and cognitive functioning in pediatric short stature:comparison of growthhormone-nave,growth-hormone-treated,and healthy samples. Eur J Pediatr, 2011,170(3):351-358.
[16]荣月芳,俞杰,唐爱华.学龄期儿童哮喘行为问题分析及护理对策分析.中国儿童保健杂志,2016,24(12):1309-1311.Rong YF, Yu J, Tang AH. Analysis of behavior problems and discuss nursing countermeasure in schoolage children with asthma. Chinese Journal of Child Health Care, 2016,24(12):1309-1311.
[2]陈凌华,赵慧,张素珍,等.矮小症主观生活质量和社会适应能力研究.中国儿童保健杂志,2016,24(12):1271-1273.Chen LH, Zhao H, Zhang SZ, et al. Research on the subjective living quality and the social adaptive behavior in children with short staure.Chinese Gournal of Child Health Care, 2016,24(12):1271-1273.
[3]区远赵,黄诚花,陈秀英,等.重组人生长激素治疗儿童生长激素缺乏症和特发性矮小症的安全性分析.中国实用医药,2017,12(13):87-89.Ou YZ, Huang CH, Chen XY, et a1. Analysis of safety of recombinant human growth hormone in the treatment of growth hormone deficiency and idiopathic short-small syndrome in children.China Practical Medicine, 2017,12(13):87-89.
[4] Cameron JI, Gignac MAM."Timing It Right":a conceptual framework for addressing the support needs of family caregivers to stroke survivors from the hospital to the home. Patient Educ Couns, 2008,70(3):305-314.
[5]徐璇,文捷,彭丹霞,等.采用PEDSQL量表对矮小症儿童的生存质量分析.中国当代儿科杂志,2013,15(10):870-874.Xu X, Wen J, Peng DX, et al. Quality of life in children with short stature:an analysis using PedsQL. Chinese Journal Contemporary Pediatrics, 2013,15(10):870-874.
[6]谢安慰,阐玉英,钮美娥,等.EV71型手足口病合并脑炎患儿母亲照顾体验的质性研究.中国护理管理,2015,15(2):165-167.Xie AW, Chan YY, Niu ME, et al. True experience of the mothers of children with EV71 type HFMD complicatedwithencephalitis:aqualitative research. Chinese Nursing Management, 2015,15(2):165-167.
[7]田银,张春华,周俊辉,等.基于时机理论对1型糖尿病患儿家属不同阶段照护体验的质性研究.护士进修杂志,2015,30(20):1899-1902.Tian Y, Zhang CH, Zhou JH, et al. The caring experiencesoffamilycaregiversofTypeI diabetes survivors in different phases based on"Timing It Right":a qualitative study. Journal of Nurses Training, 2015,30(20):1899-1902.
[8]王珊珊,薛小玲.基于时机理论的家庭护理对急性心肌梗死患者康复效果的研究.中华护理杂志,2017,52(12):1445-1449.Wang SS, Xue XL. Effects of family-centered care based on Timing it Tight on rehabilitation of patients with acute myocardial infarction. Chinese Journal of Nursing, 2017,52(12):1445-1449.
[9]谢安慰,阐玉英,钮美娥,等.学龄期白血病患儿首次PICC置管真实感受的质性研究.解放军护理杂志,2015,32(16):24-27.Xie AW, Chan YY, Niu ME, et al. True experience of school age children with acute leukemia with first time PICC:a qualitative Research. Nursing Journal of Chinese People's Liberation Army,2015,32(16):24-27.
[10]曾冬阳,张彩虹,张华,等.青少年1型糖尿病患儿对疾病认知和体验的质性研究.中国实用护理杂志,2017,33(29):2276-2279.Zeng DY, Zhang CH, Zhang H, et al. A qualitative study on the disease cognition and experience of adolescents with type 1 diabetes. Chinese Journal ofPractical Nursing, 2017,33(29):2276-2279.
[11]韩连书.重组人生长激素在儿童矮小症中的应用.临床儿科杂志,2012,30(12):1191-1192.Han LS. Application of recombinant human growth hormone in children with dwarfism.Journal of Clinical Pediatrics, 2012,30(12):1191-1192.
[12]梁莉莉,张艳,史岩,等.时机理论在疾病护理中的应用研究进展.护理研究,2016,30(2):524-525.Liang LL, Zhang Y, Shi Y, et al. Research progress on application of timing theory in disease nursing.Chinese Nursing Research, 2016,30(2):524-525.
[13]刘文婷,刘燕妮,张知新.北京市儿童保健医生对儿童矮小症知晓情况调查及干预效果评价.中国健康教育,2016,32(5):436-438.Liu WT, Liu YN, Zhang ZX. Study of awareness rate of short stature and effect evaluation of intervention among child health care doctors in Beijing. Chinese Journal of Health Education,2016,32(5):436-438.
[14]姚海波,强梅.矮小身材儿童预防性筛查和临床治疗路径管理方案的探索.中国校医,2017,31(2):87-89.Yao HB, Qiang M. Study on administrative pathway combining preventive screening and clinical practice for short stature children. Chinese Journal of School Doctor, 2017,31(2):87-89.
[15] Stephen MD, Varni JW, Limbers CA. Healthrelated quality of life and cognitive functioning in pediatric short stature:comparison of growthhormone-nave,growth-hormone-treated,and healthy samples. Eur J Pediatr, 2011,170(3):351-358.
[16]荣月芳,俞杰,唐爱华.学龄期儿童哮喘行为问题分析及护理对策分析.中国儿童保健杂志,2016,24(12):1309-1311.Rong YF, Yu J, Tang AH. Analysis of behavior problems and discuss nursing countermeasure in schoolage children with asthma. Chinese Journal of Child Health Care, 2016,24(12):1309-1311.
© 2004-2018 中国地质图书馆版权所有 京ICP备05064691号 京公网安备11010802017129号 地址：北京市海淀区学院路29号 邮编：100083 电话：办公室：(+86 10)66554848；文献借阅、咨询服务、科技查新：66554700 |