Special issue on “Children's and adolescents' rights to participate in their pain management”

Juan Bornman, Stefan Nilsson
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The importance of using person-centred care has been emphasized in healthcare to facilitate the voices of children and young people and as a way in which their views can be respected. The use of person-centred care promotes the child and adolescent's narratives and emphasizes the use of shared decision-making to be the primary source of pain management decisions.1 This approach is also in line with the United Nation's Convention on the Rights of the Child,2 and specifically with Article 24 that focusses on health. Other articles of this convention also apply. For example, Article 12 highlights respect for children's views and allows them the opportunity to give their opinions freely, specifically about issues that directly affect them. In addition, Article 13 emphasizes children's right to share their thoughts freely in terms of what they learn, think, and feel and that this can be done by talking, drawing, or writing. The nexus between these two articles and person-centred care is thus clear. Likewise, Article 17, which focusses on access to information from the Internet, radio, television, newspapers, books, etcetera, is equally relevant. Article 17 also urges adults (in this case healthcare providers) to ensure that the information provided to children is not harmful and that it is in a language format that all children can understand. Previous research has demonstrated that parent's assessments of pain symptoms in children and adolescents differ from the child's and adolescent's own assessment.3 Self-reports of the evaluation of pain management should be the first choice in pediatric healthcare. However, children's rights, as described above, are not always prioritized, and healthcare provider's own measurements often guide the decision-making around children and adolescents´ pain management.4 This means that it is necessary to develop and implement new strategies that optimize shared decision-making in pediatric healthcare. In an attempt to allow children and adolescents to take on a greater role in their own pain management, new tools and interventions are required to support acute and chronic pain measurement and treatment. This special issue includes five papers that showcase and expand knowledge about children's rights in pain management. Articles within the special issue contain three different types of methodologies (i.e., a study protocol, a qualitative design, and a scoping review) and include both acute and chronic pain management. In total 49 children and adolescents aged 6–19 years are included in the qualitative studies, giving a broad range of data collection. The first paper describes a study aimed at providing insight into practical considerations when designing clinical trials, by focussing on two clinical trials for headaches in children.5 It specifically focuses on recruitment and retention preferences, potential barriers to research, and optimizing study designs. The participants indicated that they prefer to be contacted directly by their physician about potential studies that they can participate in and that they enjoy developing rapport with study staff. However, time commitment was mentioned as one of the barriers to participation. The findings from this study could contribute to improved study designs for future studies. The second paper presents a multi-site project design that combines quantitative and qualitative methods. It describes the design of three different studies and produces a study protocol. The overall aim is to evaluate psychometric properties of the newly developed electronic Faces Thermometer Scale (a scale with 11 grades) for assessing pain in children 8–17 years of age. It concludes by proposing that this new digital pain assessment tool (i.e., the electronic Faces Thermometer Scale) could potentially strengthen the child's voice within pediatric healthcare.6 The aim of the study described in paper three is to illuminate restraint from the perspective of children's and adolescent's experiences of feeling forced during medical procedures. The analysis reveals that it hurts to get forced. This is illustrated clearly in the six themes delineated from the results: bodily misery, emotional rebellion, feeling disregarded, feeling physically limited, desiring escape, and leaving deep traces. The findings emphasize that healthcare providers should take action to support children's self-determination, participation, and integrity in pediatric healthcare.7 Paper four illuminate adolescents' experiences of Help Overcoming Pain Early (HOPE), a person-centred intervention delivered in a school setting by school nurses. The HOPE intervention was built on person-centred ethics and consisted of four meetings between school nurses and adolescents about stress and pain management. The overarching theme describes how adolescents strived to become themselves again. The study concludes by suggesting that a person-centred intervention applied in a school context could facilitate confidence in adolescents with chronic pain.8 The fifth and final paper focuses on children with autism spectrum disorder and their experience of social interaction and communication challenges. Pain is one of the most complex human stressors, and it remains so when it comes to how children with autism spectrum disorder communicate their pain. This review highlights that children with autism spectrum disorder use different verbal and non-verbal methods to communicate their pain experiences, calling attention to the importance of using holistic pain assessment strategies to meet the goal of upholding children's rights.9 In conclusion, in attempts to foreground child and adolescent perspectives regarding pain measurement and management, at least four aspects should be considered. First, children need to be provided with opportunities to express their opinions, which could include alternative methods of expression, such as drawing or painting. Second, children should be furnished with appropriate means to express themselves for example, using any form of communication, and often using multi-modal forms of communication. Third, adults (i.e., all healthcare providers) should engage with children in one-to-one situations in which their opinions are listened to in a respectful and non-judgemental way. Fourth, adults should act on the opinions and/or wishes children shared—also related to how they think their pain should best be managed.","PeriodicalId":94166,"journal":{"name":"Paediatric & neonatal pain","volume":null,"pages":null},"PeriodicalIF":0.0000,"publicationDate":"2023-11-10","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":"0","resultStr":null,"platform":"Semanticscholar","paperid":null,"PeriodicalName":"Paediatric & neonatal pain","FirstCategoryId":"1085","ListUrlMain":"https://doi.org/10.1002/pne2.12116","RegionNum":0,"RegionCategory":null,"ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":null,"EPubDate":"","PubModel":"","JCR":"","JCRName":"","Score":null,"Total":0}
引用次数: 0

Abstract

The dialogues between children and adolescents and their healthcare providers are essential in managing pain in accordance with the child's interests and wishes. It can, however, be challenging to ensure that pain management is in the child's best interest due to a myriad of reasons. One of these relates to the specific communicative challenges that exist in this population, that might arise because of the child's level of development, including receptive and expressive communication skills, the particular illness and treatment (e.g., tracheotomy), distress, and/or disabilities. It is therefore unsurprising that children and adolescents are regarded as vulnerable groups in pediatric healthcare. The importance of using person-centred care has been emphasized in healthcare to facilitate the voices of children and young people and as a way in which their views can be respected. The use of person-centred care promotes the child and adolescent's narratives and emphasizes the use of shared decision-making to be the primary source of pain management decisions.1 This approach is also in line with the United Nation's Convention on the Rights of the Child,2 and specifically with Article 24 that focusses on health. Other articles of this convention also apply. For example, Article 12 highlights respect for children's views and allows them the opportunity to give their opinions freely, specifically about issues that directly affect them. In addition, Article 13 emphasizes children's right to share their thoughts freely in terms of what they learn, think, and feel and that this can be done by talking, drawing, or writing. The nexus between these two articles and person-centred care is thus clear. Likewise, Article 17, which focusses on access to information from the Internet, radio, television, newspapers, books, etcetera, is equally relevant. Article 17 also urges adults (in this case healthcare providers) to ensure that the information provided to children is not harmful and that it is in a language format that all children can understand. Previous research has demonstrated that parent's assessments of pain symptoms in children and adolescents differ from the child's and adolescent's own assessment.3 Self-reports of the evaluation of pain management should be the first choice in pediatric healthcare. However, children's rights, as described above, are not always prioritized, and healthcare provider's own measurements often guide the decision-making around children and adolescents´ pain management.4 This means that it is necessary to develop and implement new strategies that optimize shared decision-making in pediatric healthcare. In an attempt to allow children and adolescents to take on a greater role in their own pain management, new tools and interventions are required to support acute and chronic pain measurement and treatment. This special issue includes five papers that showcase and expand knowledge about children's rights in pain management. Articles within the special issue contain three different types of methodologies (i.e., a study protocol, a qualitative design, and a scoping review) and include both acute and chronic pain management. In total 49 children and adolescents aged 6–19 years are included in the qualitative studies, giving a broad range of data collection. The first paper describes a study aimed at providing insight into practical considerations when designing clinical trials, by focussing on two clinical trials for headaches in children.5 It specifically focuses on recruitment and retention preferences, potential barriers to research, and optimizing study designs. The participants indicated that they prefer to be contacted directly by their physician about potential studies that they can participate in and that they enjoy developing rapport with study staff. However, time commitment was mentioned as one of the barriers to participation. The findings from this study could contribute to improved study designs for future studies. The second paper presents a multi-site project design that combines quantitative and qualitative methods. It describes the design of three different studies and produces a study protocol. The overall aim is to evaluate psychometric properties of the newly developed electronic Faces Thermometer Scale (a scale with 11 grades) for assessing pain in children 8–17 years of age. It concludes by proposing that this new digital pain assessment tool (i.e., the electronic Faces Thermometer Scale) could potentially strengthen the child's voice within pediatric healthcare.6 The aim of the study described in paper three is to illuminate restraint from the perspective of children's and adolescent's experiences of feeling forced during medical procedures. The analysis reveals that it hurts to get forced. This is illustrated clearly in the six themes delineated from the results: bodily misery, emotional rebellion, feeling disregarded, feeling physically limited, desiring escape, and leaving deep traces. The findings emphasize that healthcare providers should take action to support children's self-determination, participation, and integrity in pediatric healthcare.7 Paper four illuminate adolescents' experiences of Help Overcoming Pain Early (HOPE), a person-centred intervention delivered in a school setting by school nurses. The HOPE intervention was built on person-centred ethics and consisted of four meetings between school nurses and adolescents about stress and pain management. The overarching theme describes how adolescents strived to become themselves again. The study concludes by suggesting that a person-centred intervention applied in a school context could facilitate confidence in adolescents with chronic pain.8 The fifth and final paper focuses on children with autism spectrum disorder and their experience of social interaction and communication challenges. Pain is one of the most complex human stressors, and it remains so when it comes to how children with autism spectrum disorder communicate their pain. This review highlights that children with autism spectrum disorder use different verbal and non-verbal methods to communicate their pain experiences, calling attention to the importance of using holistic pain assessment strategies to meet the goal of upholding children's rights.9 In conclusion, in attempts to foreground child and adolescent perspectives regarding pain measurement and management, at least four aspects should be considered. First, children need to be provided with opportunities to express their opinions, which could include alternative methods of expression, such as drawing or painting. Second, children should be furnished with appropriate means to express themselves for example, using any form of communication, and often using multi-modal forms of communication. Third, adults (i.e., all healthcare providers) should engage with children in one-to-one situations in which their opinions are listened to in a respectful and non-judgemental way. Fourth, adults should act on the opinions and/or wishes children shared—also related to how they think their pain should best be managed.
“儿童及青少年参与疼痛管理的权利”特刊
儿童和青少年与其保健提供者之间的对话对于根据儿童的利益和愿望管理疼痛至关重要。然而,由于种种原因,确保疼痛管理符合儿童的最佳利益是具有挑战性的。其中之一与这一人群中存在的特定沟通挑战有关,这可能是因为儿童的发展水平,包括接受和表达沟通技能,特殊疾病和治疗(例如气管切开术),痛苦和/或残疾。因此,儿童和青少年被视为儿科保健中的弱势群体并不奇怪。在医疗保健中强调了以人为本的护理的重要性,以促进儿童和青年的声音,并作为尊重他们意见的一种方式。使用以人为本的护理促进儿童和青少年的叙述,并强调使用共同决策作为疼痛管理决策的主要来源这一做法也符合《联合国儿童权利公约》2,特别是符合以健康为重点的第24条。本公约的其他条款也适用。例如,第12条强调尊重儿童的意见,并允许他们有机会自由发表意见,特别是对直接影响到他们的问题发表意见。此外,第13条强调儿童有权自由地分享他们在学习、思考和感受方面的想法,这可以通过说话、绘画或写作来实现。因此,这两篇文章与以人为本的护理之间的联系是明确的。同样,第17条侧重于从互联网、广播、电视、报纸、书籍等获取信息,也同样相关。第17条还敦促成年人(在这种情况下是保健提供者)确保向儿童提供的信息是无害的,并以所有儿童都能理解的语言形式提供。先前的研究表明,父母对儿童和青少年疼痛症状的评估与儿童和青少年自己的评估不同自我报告的评估疼痛管理应是首选儿科保健。然而,如上所述,儿童的权利并不总是优先考虑的,医疗保健提供者自己的衡量标准往往指导有关儿童和青少年疼痛管理的决策这意味着有必要制定和实施新的战略,优化儿科医疗保健的共同决策。为了让儿童和青少年在他们自己的疼痛管理中发挥更大的作用,需要新的工具和干预措施来支持急性和慢性疼痛的测量和治疗。本期特刊包括五篇论文,展示和扩展了有关儿童疼痛管理权利的知识。特刊中的文章包含三种不同类型的方法(即,研究方案,定性设计和范围审查),包括急性和慢性疼痛管理。定性研究共包括49名6-19岁的儿童和青少年,提供了广泛的数据收集。第一篇论文描述了一项研究,旨在通过关注儿童头痛的两项临床试验,为设计临床试验时的实际考虑提供见解它特别关注招聘和保留偏好,研究的潜在障碍以及优化研究设计。参与者表示,他们更喜欢医生直接联系他们,了解他们可以参与的潜在研究,他们喜欢与研究人员建立融洽的关系。然而,时间承诺被认为是参与的障碍之一。这项研究的发现可能有助于改进未来研究的研究设计。第二篇论文提出了一种结合定量和定性方法的多站点项目设计。它描述了三个不同研究的设计,并产生了一个研究方案。总体目的是评估新开发的电子面部温度计量表(11级量表)的心理测量特性,用于评估8-17岁儿童的疼痛。它的结论是,这种新的数字疼痛评估工具(即电子面部温度计量表)可能会在儿科医疗保健中加强儿童的声音论文三所述的研究目的是从儿童和青少年在医疗程序中感觉被迫的经历的角度来阐明克制。分析表明,被强迫是痛苦的。 从结果中可以清楚地看出六个主题:身体上的痛苦、情感上的叛逆、感觉被忽视、感觉身体上的限制、渴望逃离和留下深深的痕迹。研究结果强调,医疗保健提供者应采取行动,支持儿童的自决,参与和完整性在儿科医疗保健论文四阐明了青少年早期帮助克服疼痛(HOPE)的经验,这是一种在学校环境中由学校护士提供的以人为本的干预。HOPE干预建立在以人为本的道德规范之上,包括学校护士和青少年之间关于压力和疼痛管理的四次会议。最重要的主题是描述青少年如何努力重新成为自己。这项研究的结论是,在学校环境中采用以人为本的干预可以促进患有慢性疼痛的青少年的信心第五篇也是最后一篇论文的重点是自闭症谱系障碍儿童及其社会互动和沟通挑战的经历。疼痛是人类最复杂的压力源之一,当涉及到自闭症谱系障碍儿童如何传达他们的疼痛时,它仍然如此。这篇综述强调了自闭症谱系障碍儿童使用不同的语言和非语言方式来交流他们的疼痛经历,呼吁人们注意使用整体疼痛评估策略来实现维护儿童权利的重要性总之,在试图前景儿童和青少年的观点有关疼痛的测量和管理,至少应考虑四个方面。首先,孩子们需要有机会表达自己的意见,这可以包括其他的表达方式,如绘画或绘画。第二,应该为儿童提供适当的表达自己的手段,例如,使用任何形式的交流,并经常使用多种形式的交流。第三,成年人(即所有医疗保健提供者)应与儿童进行一对一的交流,以尊重和不加评判的方式听取他们的意见。第四,成年人应该根据孩子们分享的意见和/或愿望采取行动——这也与他们认为如何最好地管理自己的痛苦有关。
本文章由计算机程序翻译,如有差异,请以英文原文为准。
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