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随叫随到的队长:一项支持接受定期眼部检查的视网膜母细胞瘤儿童的干预措施的定性研究。

Captains on call: A qualitative investigation of an intervention to support children with retinoblastoma undergoing regular eye examinations.

机构信息

Department of Anaesthesia, Children's Health Queensland, South Brisbane, Queensland, Australia.

School of Nursing and Midwifery, Griffith University, Southport, Queensland, Australia.

出版信息

Psychooncology. 2024 Mar;33(3):e6315. doi: 10.1002/pon.6315.

DOI:10.1002/pon.6315
PMID:38423988
Abstract

BACKGROUND

Retinoblastoma is a rare childhood ophthalmic cancer that requires frequent eye examinations under anaesthesia and painful or distressing procedures. This can cause significant anxiety for children and their families.

OBJECTIVE

We evaluated a Starlight Children's Foundation programme, 'Captains on Call', at the Queensland Children's Hospital, which aims to provide positive distraction and reduce stress, anxiety and pain during the perioperative journey for children in the retinoblastoma treatment pathway. This study examined the impact of the programme on the perioperative experience of the children and their families, using a qualitative design.

METHODS

This study was conducted in a paediatric operating suite at a tertiary-level children's hospital in Australia. We interviewed a parent from 20 families (from a cohort of 40 families, including 44 children), whose children received treatment or screening for retinoblastoma, focusing on the programme's impact on the child and family at various stages during the perioperative journey. We undertook a thematic analysis of transcribed interviews.

RESULTS

We identified two themes, each with two sub-themes: (1) the programme positively contributed to the overall treatment journey, by addressing different needs at different times, and helping to reframe a traumatic medical experience, and (2), the programme supported the whole family unit by empowering children through play, and adopting a family systems approach which recognised the impact of cancer treatment on the whole family.

CONCLUSION

This study highlights the value of the Captains on Call programme in supporting children with retinoblastoma and their families during perioperative visits. The Captains, particularly as non-medicalised professionals in a healthcare setting, built trust and rapport with the children through play over repeated episodes of care. The interprofessional collaborative approach with a reflective cycle of practice extended it beyond a programme providing simple distraction. Other retinoblastoma services may benefit from implementing a similar approach.

摘要

背景

视网膜母细胞瘤是一种罕见的儿童眼部癌症,需要在麻醉下频繁进行眼部检查,并进行痛苦或令人不适的治疗。这会给儿童及其家庭带来巨大的焦虑。

目的

我们评估了昆士兰儿童医院的星光儿童基金会(Starlight Children's Foundation)计划“值班队长”(Captains on Call),该计划旨在为接受视网膜母细胞瘤治疗的儿童提供积极的分散注意力,减少围手术期的压力、焦虑和疼痛。本研究采用定性设计,考察了该计划对儿童及其家庭围手术期体验的影响。

方法

本研究在澳大利亚一家三级儿童医院的儿科手术室进行。我们采访了 20 个家庭的家长(共 40 个家庭,包括 44 名儿童),他们的孩子接受了视网膜母细胞瘤的治疗或筛查,重点关注该计划在围手术期旅程的各个阶段对儿童和家庭的影响。我们对转录的访谈进行了主题分析。

结果

我们确定了两个主题,每个主题都有两个子主题:(1)该计划通过在不同时间满足不同需求,并帮助重新构建创伤性医疗体验,积极促进了整体治疗过程;(2)该计划通过游戏赋予儿童权力,采用家庭系统方法,承认癌症治疗对整个家庭的影响,从而支持整个家庭单位。

结论

本研究强调了值班队长计划在支持接受视网膜母细胞瘤治疗的儿童及其家庭方面的价值。队长们,特别是作为医疗环境中的非医学专业人员,通过反复的护理过程中的游戏与孩子们建立了信任和融洽关系。这种跨专业的合作方法和实践的反思循环,使该计划超越了提供简单分散注意力的范畴。其他视网膜母细胞瘤服务机构可能会受益于实施类似的方法。

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