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当孩子被诊断为青少年特发性脊柱侧凸时,父母的信息需求、治疗关注点和心理健康:系统评价。

Parents' information needs, treatment concerns, and psychological well-being when their child is diagnosed with adolescent idiopathic scoliosis: A systematic review.

机构信息

School of Psychology, University College Dublin, Belfield, Dublin, D04V1W8, Ireland.

School of Psychology, University College Dublin, Belfield, Dublin, D04V1W8, Ireland.

出版信息

Patient Educ Couns. 2021 Jun;104(6):1347-1355. doi: 10.1016/j.pec.2020.11.023. Epub 2020 Nov 25.

Abstract

OBJECTIVE

We systematically reviewed the experiences of parents who have a child with adolescent idiopathic scoliosis in order to understand their needs and concerns related to their child's healthcare, and assist health professionals in supporting parents of this paediatric patient group.

METHODS

A systematic search strategy identified eighteen relevant studies published between 2000 and 2020. Quality was assessed using the Mixed Methods Appraisal Tool and the literature was narratively synthesised.

RESULTS

Three main themes were evident across the literature including information needs, treatment concerns, and psychological well-being. Studies predominantly focused on the surgical treatment of scoliosis.

CONCLUSION

Parents face challenges such as acquiring appropriate knowledge about scoliosis to participate in healthcare decisions and coping with their child undergoing invasive spinal surgery. Throughout this time, their psychological well-being can be negatively impacted. Considering parents' experiences and support needs throughout this anxiety-provoking time is an important step in delivering family-centered care and promoting better outcomes for paediatric patients.

PRACTICE IMPLICATIONS

Providing parents with appropriate resources and addressing concerns around surgical complications, postoperative pain, and how they can best support their child before and after surgery, may alleviate some of the emotional burden that parents experience.

摘要

目的

我们系统地回顾了患有青少年特发性脊柱侧凸的患儿的父母的经历,以便了解他们与子女医疗保健相关的需求和关注点,并帮助卫生专业人员为这一儿科患者群体的父母提供支持。

方法

采用系统搜索策略,确定了 2000 年至 2020 年期间发表的 18 项相关研究。使用混合方法评估工具评估质量,并对文献进行叙述性综合。

结果

文献中有三个主要主题,包括信息需求、治疗关注和心理健康。研究主要集中在脊柱侧凸的手术治疗上。

结论

父母在面临挑战,如获取有关脊柱侧凸的适当知识以参与医疗保健决策以及应对孩子接受有创性脊柱手术。在此期间,他们的心理健康可能会受到负面影响。在提供以家庭为中心的护理和促进儿科患者更好的治疗结果方面,考虑到父母在这段焦虑时期的经历和支持需求是一个重要步骤。

实践意义

为父母提供适当的资源,并解决与手术并发症、术后疼痛以及他们如何在手术前后最好地支持孩子有关的问题,可能会减轻父母所经历的一些情绪负担。

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