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促进幼年特发性关节炎患儿参与医疗护理情境:一项扎根理论研究

Promoting participation in healthcare situations for children with JIA: a grounded theory study.

作者信息

Gilljam Britt-Mari, Arvidsson Susann, Nygren Jens M, Svedberg Petra

机构信息

Region Halland, Halmstad Hospital, Sweden.

School of Social and Health Sciences, Halmstad University, Halmstad, Sweden;

出版信息

Int J Qual Stud Health Well-being. 2016 May 10;11:30518. doi: 10.3402/qhw.v11.30518. eCollection 2016.

Abstract

Children's right to participate in their own healthcare has increasingly become highlighted in national and international research as well as in government regulations. Nevertheless, children's participation in healthcare is unsatisfactorily applied in praxis. There is a growing body of research regarding children's participation, but research from the children's own perspective is scarce. The aim of this study was thus to explore the experiences and preferences for participation in healthcare situations among children with juvenile idiopathic arthritis (JIA) as a foundation for creating strategies to promote their participation in pediatric healthcare. Twenty children, aged 8 to 17 years, with JIA were interviewed individually and in focus groups. In order to increase the children's opportunities to express their own experiences, different interview techniques were used, such as draw-and-tell and role play with dolls. The analysis was conducted with a constructivist grounded theory. The result explores children's perspective of influencing processes promoting their participation in healthcare situations. The core category that emerged was, "Releasing fear and uncertainty opens up for confidence and participation," and the categories related to the core category are, "surrounded by a sense of security and comfort," and "strengthened and supported to become involved." In conclusion, the knowledge gained in this study offers new insights from the perspective of children themselves, and can constitute a valuable contribution to the understanding of necessary conditions for the development of specific interventions that promote participation among children in healthcare situations.

摘要

儿童参与自身医疗保健的权利在国内和国际研究以及政府法规中日益受到重视。然而,儿童参与医疗保健在实践中的应用并不理想。关于儿童参与的研究越来越多,但从儿童自身角度进行的研究却很少。因此,本研究的目的是探索幼年特发性关节炎(JIA)患儿在医疗保健情境中参与的经历和偏好,为制定促进他们参与儿科医疗保健的策略奠定基础。对20名年龄在8至17岁的JIA患儿进行了单独访谈和焦点小组访谈。为了增加儿童表达自身经历的机会,采用了不同的访谈技巧,如画图讲述和玩偶角色扮演。分析采用建构主义扎根理论进行。结果探索了儿童对促进他们参与医疗保健情境的影响过程的看法。出现的核心类别是“消除恐惧和不确定性为自信和参与打开大门”,与核心类别相关的类别是“被安全感和舒适感包围”以及“得到加强和支持从而参与其中”。总之,本研究获得的知识从儿童自身角度提供了新的见解,可为理解促进儿童参与医疗保健情境的具体干预措施发展的必要条件做出宝贵贡献。

https://cdn.ncbi.nlm.nih.gov/pmc/blobs/c1d1/4864848/afa672ace58e/QHW-11-30518-g001.jpg

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