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不想去想它:一项针对患有风湿性疾病的儿童(6-18 岁)及其父母在家中定期接受针剂注射的经验的定性研究。

I don't want to think about it: a qualitative study of children (6-18 years) with rheumatic diseases and parents' experiences with regular needle injections at home.

机构信息

Department of Nursing Science, University of Oslo, Oslo, Norway.

Division of Emergencies and Critical Care, Oslo University Hospital, Oslo, Norway.

出版信息

Pediatr Rheumatol Online J. 2021 Jan 22;19(1):8. doi: 10.1186/s12969-021-00495-4.

DOI:10.1186/s12969-021-00495-4
PMID:33482852
原文链接:https://pmc.ncbi.nlm.nih.gov/articles/PMC7821489/
Abstract

BACKGROUND

Overall outcomes of pediatric rheumatic diseases (RD) have improved due to treatment with biologic agents and methotrexate. For many children, this treatment often entails regular needle injections. Pain and fear of needle injections are common in childhood, but how children and parents handle long-term needle injections at home has not been fully explored. This study aimed to explore how regular needle injections affect children with RD and their parents in their daily living.

METHODS

This explorative qualitative study used individual interviews and focus groups to ensure a comprehensive investigation of the topic. Children aged 6 to 16 years (n = 7) and their parents (n = 8) were interviewed individually 4 to 6 months after the onset of needle injection treatment. The focus groups included children aged 11 to 17 years (n = 9) and parents (n = 8) with a minimum of 6 months of experience with injection treatment. Data were analyzed using thematic analysis.

RESULTS

The main themes; "challenges," "motivational factors," and "routines" captured experiences and strategies that influenced the continuation of needle injections at home. Many children feared the moment immediately before the needle stick, although they had become accustomed to the pain. Most parents felt insecure about handling needle injections and lacked follow-up from healthcare providers. The children's experience of treatment effects and self-confidence were essential to maintain motivation for further injections. A number of coping strategies helped children focus away from injection related discomfort, often discovered by chance. Facilitating firm routines and shared responsibility within families helped children develop self-confidence during the procedure. Children and parents struggled to find suitable information on the Internet.

CONCLUSIONS

Children and parents experienced long-term needle injections challenging. They used their own limited resources and cooperated within the families to create routines and to introduce coping strategies necessary to manage and keep up with the procedure. Although the injection itself was not experienced very painful, the discomfort, worries and impact on daily life represented far more than a little needle stick, and thus needs more attention from healthcare providers.

摘要

背景

由于生物制剂和甲氨蝶呤的治疗,儿科风湿性疾病(RD)的整体预后得到了改善。对于许多儿童来说,这种治疗通常需要定期进行针剂注射。疼痛和对针剂注射的恐惧在儿童中很常见,但儿童和家长如何在家中处理长期的针剂注射尚未得到充分探讨。本研究旨在探讨RD 患儿及其家长在日常生活中如何应对常规针剂注射。

方法

这是一项探索性的定性研究,使用了个体访谈和焦点小组,以确保对该主题进行全面调查。6 至 16 岁的儿童(n=7)及其父母(n=8)在开始接受针剂注射治疗后 4 至 6 个月接受了单独访谈。焦点小组包括 11 至 17 岁的儿童(n=9)和父母(n=8),他们至少有 6 个月的注射治疗经验。使用主题分析对数据进行分析。

结果

“挑战”、“激励因素”和“常规”这三个主要主题捕捉到了影响在家中继续进行针剂注射的经验和策略。许多孩子在针头插入前的那一刻感到恐惧,尽管他们已经习惯了疼痛。大多数父母对处理针剂注射感到不安,并且缺乏来自医疗保健提供者的后续支持。孩子对治疗效果和自信心的体验对于保持进一步注射的动力至关重要。一些应对策略有助于孩子将注意力从与注射相关的不适上转移开,这些策略往往是偶然发现的。在家庭中建立坚定的常规和共同责任有助于孩子在手术过程中建立自信。孩子和家长都难以在互联网上找到合适的信息。

结论

儿童和家长长期接受针剂注射,感到很有挑战性。他们利用自己有限的资源,在家庭中合作,制定常规,并引入必要的应对策略,以管理和坚持治疗过程。虽然注射本身并不非常疼痛,但不适感、担忧和对日常生活的影响远远超过了小小的针头,因此需要医疗保健提供者给予更多关注。

https://cdn.ncbi.nlm.nih.gov/pmc/blobs/340d/7821489/e7884f784903/12969_2021_495_Fig1_HTML.jpg
https://cdn.ncbi.nlm.nih.gov/pmc/blobs/340d/7821489/e7884f784903/12969_2021_495_Fig1_HTML.jpg
https://cdn.ncbi.nlm.nih.gov/pmc/blobs/340d/7821489/e7884f784903/12969_2021_495_Fig1_HTML.jpg

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