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Back to Basics: CLABSI Reduction Through Implementation of an Oral Care and Hygiene Bundle. 回归基础:通过实施口腔护理和卫生一揽子计划来减少CLABSI。
IF 1.7 3区 医学 Q2 NURSING Pub Date : 2019-09-01 Epub Date: 2019-05-17 DOI: 10.1177/1043454219849583
Gina Kemp, Melissa Hallbourg, Diane Altounji, Rita Secola

Children with cancer often undergo treatments that render them severely immunocompromised. Side effects of treatment place them at risk for developing oral mucositis (OM), which can potentially lead to infection and bacteremia. Staff nurses on an inpatient pediatric oncology unit noted inconsistent daily oral hygiene practices despite assessing OM consistently. Basic oral hygiene can reduce the severity of OM, and evidence-based bundled care has shown to increase consistency of practice. Based on findings and recommendations from the literature, an oral care and hygiene bundle was developed. The oral care bundle included a soft bristled toothbrush, fluoride toothpaste, twice-daily brushing and sodium bicarbonate rinses, lip balm, and oral moisturizer. The hygiene component consisted of a daily bath or shower and daily linen changes. Education on the rationale and purpose for the use of an oral care and hygiene bundle was provided to the inpatient direct care staff prior to implementation on two inpatient oncology units. Audits were performed to measure the adherence of the oral care and hygiene bundle. Central line-associated bloodstream infections were measured in collaboration with the quality and infection prevention departments. Since the oral care and hygiene bundle was implemented, laboratory-confirmed bloodstream infection rates decreased from 1.05 to 0.54 per 1,000 catheter days, while mucosal barrier injury rates decreased from 2.98 to 1.27 per 1,000 catheter days.

患有癌症的儿童经常接受治疗,使他们的免疫功能严重受损。治疗的副作用使他们面临患口腔黏膜炎(OM)的风险,这可能导致感染和菌血症。住院儿科肿瘤科的护士注意到,尽管对OM进行了一致的评估,但日常口腔卫生习惯却不一致。基本的口腔卫生可以减轻OM的严重程度,而基于证据的捆绑治疗已证明可提高实践的一致性。根据文献的发现和建议,制定了口腔护理和卫生包。口腔护理包包括一把软毛牙刷、含氟牙膏、每天刷牙两次、碳酸氢钠漱口水、润唇膏和口腔保湿霜。卫生部分包括每天洗澡或淋浴和每天更换床单。在两个肿瘤住院单位实施之前,向住院直接护理人员提供了关于使用口腔护理和卫生包的理由和目的的教育。进行审计以衡量口腔护理和卫生包的依从性。与质量和感染预防部门合作测量中心静脉相关血流感染。由于实施了口腔护理和卫生包,实验室确认的血液感染率从1.05 / 1000导管天下降到0.54 / 1000导管天,粘膜屏障损伤率从2.98 / 1000导管天下降到1.27 / 1000导管天。
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引用次数: 8
Skin Complications Associated With Pediatric Central Venous Access Devices: Prevalence, Incidence, and Risk. 与儿童中心静脉通路装置相关的皮肤并发症:患病率、发生率和风险。
IF 1.7 3区 医学 Q2 NURSING Pub Date : 2019-09-01 Epub Date: 2019-05-18 DOI: 10.1177/1043454219849572
Amanda J Ullman, Tricia M Kleidon, Karen Turner, Victoria Gibson, Anna Dean, Paula Cattanach, Colleen Pitt, Julieta Woosley, Nicole Marsh, Nicole Gavin, Mari Takashima, Claire M Rickard

Central venous access devices (CVADs) are vital to enable treatment for children with cancer and other complex health conditions. However, complications effecting the CVAD wound are commonly reported. This study aimed to identify the incidence and prevalence of CVAD-associated skin complications current management, and characteristics associated with complication development, in pediatrics. A prospective observational study performed across medical, oncology, and hematology departments at a tertiary pediatric hospital in Australia, between April and July 2017. Children admitted with CVADs were assessed twice weekly for CVAD-associated skin complications and associated signs and symptoms. The data were analyzed using descriptive statistics (i.e., proportions, frequency) and time-to-event multivariable regression (i.e., hazard ratios [HRs]). Two hundred and seventy-one CVADs were reviewed over 43,787 catheter days, with over one eighth of participants (14%; n = 37) having a CVAD-associated skin complication during their admission (0.95 per 1,000 catheter days, 95% confidence interval [CI; 0.61, 1.17]), most commonly contact dermatitis (11%; n = 29; 0.72 per 1,000 catheter days 95% CI [0.50, 1.04]). Within biweekly checks the median point prevalence of complications varied between 0.4% and 11% and clinical management was wide-ranging. A primary diagnosis of oncology (HR 2.89, 95% CI [1.10, 7.62]) or medical/surgical (HR 2.55, 95% CI [1.04, 6.22]) conditions; plain, nonbordered polyurethane dressings (HR 4.92, 95% CI [2.00, 12.13]); and poor dressing integrity (HR 2.64, 95% CI [1.18, 5.92]) were significantly associated with contact dermatitis. In conclusion, substantial numbers of pediatric patients experience CVAD-associated skin complications, and innovations are necessary to identify, prevent, and treat these health care-associated injuries.

中心静脉通路装置(cvad)对于治疗患有癌症和其他复杂健康状况的儿童至关重要。然而,影响CVAD伤口的并发症经常被报道。本研究旨在确定儿科心血管疾病相关皮肤并发症的发生率和患病率、目前的处理方法以及并发症发展的相关特征。2017年4月至7月,澳大利亚一家三级儿科医院的内科、肿瘤科和血液科进行了一项前瞻性观察性研究。患有cvad的儿童每周评估两次与cvad相关的皮肤并发症和相关体征和症状。使用描述性统计(即比例、频率)和时间-事件多变量回归(即风险比[hr])对数据进行分析。在43787天的导管时间内,对271例cvad进行了检查,超过八分之一的参与者(14%;n = 37)入院时出现cad相关皮肤并发症(0.95 / 1000导管天,95%置信区间[CI;0.61, 1.17]),最常见的是接触性皮炎(11%;N = 29;0.72 / 1000个导管天95% CI[0.50, 1.04])。在两周检查中,并发症的中位数患病率在0.4%至11%之间变化,临床管理范围广泛。初步诊断为肿瘤(HR 2.89, 95% CI[1.10, 7.62])或内科/外科(HR 2.55, 95% CI [1.04, 6.22]);普通无边界聚氨酯敷料(HR 4.92, 95% CI [2.00, 12.13]);和敷料完整性差(HR 2.64, 95% CI[1.18, 5.92])与接触性皮炎显著相关。总之,相当数量的儿科患者经历cad相关的皮肤并发症,需要创新来识别、预防和治疗这些卫生保健相关的损伤。
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引用次数: 5
Parent and Child Preferences and Styles of Communication About Cancer Diagnoses and Treatment 父母与子女对癌症诊断与治疗的偏好与沟通方式
IF 1.7 3区 医学 Q2 NURSING Pub Date : 2019-07-25 DOI: 10.1177/1043454219859235
Lauren Smith, Anna M. Maybach, A. Feldman, A. Darling, T. Akard, M. Gilmer
Communication challenges frequently occur among families and health care providers of children with life-threatening conditions. These obstacles compound concerns related to children’s diagnoses and treatment, the family’s quality of life, and delivery of care. Developmentally appropriate and validated methods of addressing the communication preferences of families with chronically ill children are limited. This study used six focus groups to determine child and parent preferences and styles of communication centering on new diagnoses and changes in prognosis. Hypothetical situations were used to minimize feelings of self-consciousness among school-aged and adolescent participants. Qualitative analyses (interrater reliability 75%) of child and parent responses revealed 3 categories and 11 subcategories or themes. The category of Characteristics of Communication Exchange included (1) how to tell, (2) who should tell, (3) when to tell, (4) who should be included, and (5) what to tell. The Knowledge and Understanding category included themes of (1) side effects of treatment, (2) what children understand, and (3) questions when being diagnosed. The category of Feelings and Emotions included themes of (1) feelings about changes in prognosis, (2) children’s feelings on being informed, and (3) coping and emotional regulation. Results reveal a need for developmentally appropriate, evidence-based education to inform parents on how, what, and when to communicate information concerning their child’s disease, as well as instructions around facilitating those discussions. Moreover, a need for professional education and training programs for providers is demonstrated by some parental dissatisfaction with bedside manner and disclosure of information. The data collected from this study lay a foundation for future research in communication as a principal factor in quality of life for pediatric patients and their families.
患有危及生命疾病的儿童的家庭和保健提供者之间经常出现沟通困难。这些障碍加剧了对儿童诊断和治疗、家庭生活质量和提供护理的关切。发展上适当的和有效的方法来解决有慢性病儿童的家庭的沟通偏好是有限的。本研究使用六个焦点小组来确定儿童和家长的偏好和沟通方式,以新诊断和预后的变化为中心。假设情境被用来最小化学龄和青少年参与者的自我意识。对儿童和家长的回答进行定性分析(信度为75%),发现了3个类别和11个子类别或主题。交际特征的范畴包括(1)如何讲,(2)谁应该讲,(3)什么时候讲,(4)谁应该讲,(5)讲什么。知识和理解类别包括(1)治疗的副作用,(2)儿童理解的内容,以及(3)诊断时的问题。感受和情绪类别包括(1)对预后变化的感受,(2)儿童对被告知的感受,(3)应对和情绪调节的主题。研究结果表明,有必要开展与发育相适应的、以证据为基础的教育,告知父母如何、用什么、何时沟通有关孩子疾病的信息,并为促进这些讨论提供指导。此外,一些家长对治疗态度和信息披露的不满表明,需要对医疗服务提供者进行专业教育和培训。本研究收集的数据为今后研究沟通是影响儿科患者及其家庭生活质量的主要因素奠定了基础。
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引用次数: 16
Perspectives of Childhood Cancer Symptom-Related Distress: Results of the State of the Science Survey. 儿童癌症症状相关痛苦的前景:科学状况调查结果
IF 1.9 3区 医学 Q2 NURSING Pub Date : 2019-07-01 DOI: 10.1177/1043454219858608
Micah A Skeens, Patsy Cullen, Joe Stanek, Marilyn Hockenberry

Management of symptom-related distress is an important area of pediatric oncology nursing. Participants who attended the Children's Oncology Group (COG) State of the Science Symposium on symptom distress completed an anonymous survey. The purpose was to explore participant perceptions of symptom distress experienced by children receiving cancer treatment on clinical trials, determine how symptom distress is currently assessed at COG institutions, and to identify what interventions are used to reduce symptom distress for these children. Among the 90 symposium attendees, 72% completed the survey, the majority (92%) of whom were nurses. The five most distressing symptoms in children with cancer enrolled on clinical trials identified by survey respondents were nausea/vomiting, fatigue, pain, anxiety, and sleep disturbances. Results from our survey also suggest that symptom distress may differ by disease type. For example, symptoms associated with leukemia/lymphoma included steroid side effects, procedural pain, and neuropathy. The majority of respondents (90%) also reported that symptoms go unrecognized by health care providers. The most commonly described unrecognized symptoms were behavioral (i.e., sadness, anxiety, fear, depression, and emotional needs; 45%) and fatigue (19%). Key focus areas reported by respondents included informal and inconsistent symptom assessment, the need for uniform measurement tools, and improved documentation of symptom-related distress. Management of symptom-related distress is an important aspect of pediatric oncology nursing. Further exploration of symptom distress experienced by children with specific types of cancers, and the development of standardized symptom assessment processes, will provide a foundation for developing future interventions aimed at alleviating symptom-related distress.

症状相关窘迫的处理是儿科肿瘤护理的一个重要领域。参加儿童肿瘤小组(COG)症状困扰科学研讨会的参与者完成了一项匿名调查。目的是探讨参与者对临床试验中接受癌症治疗的儿童所经历的症状困扰的看法,确定COG机构目前如何评估症状困扰,并确定使用哪些干预措施来减少这些儿童的症状困扰。在90名与会人员中,72%的人完成了调查,其中大部分(92%)是护士。在参与临床试验的癌症儿童中,调查对象确定的五种最令人痛苦的症状是恶心/呕吐、疲劳、疼痛、焦虑和睡眠障碍。我们的调查结果还表明,症状困扰可能因疾病类型而异。例如,与白血病/淋巴瘤相关的症状包括类固醇副作用、程序性疼痛和神经病变。大多数答复者(90%)还报告说,卫生保健提供者没有认识到症状。最常见的未被识别的症状是行为(即悲伤、焦虑、恐惧、抑郁和情感需求;45%)和疲劳(19%)。答复者报告的重点领域包括非正式和不一致的症状评估、需要统一的测量工具以及改进与症状有关的痛苦记录。症状相关困扰的管理是儿科肿瘤护理的一个重要方面。进一步探索患有特定类型癌症的儿童所经历的症状困扰,并制定标准化的症状评估流程,将为制定旨在减轻症状相关困扰的未来干预措施奠定基础。
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引用次数: 0
Symptom Biomarkers for Children Receiving Treatment for Cancer: State of the Science. 癌症治疗儿童的症状生物标志物:科学现状
IF 1.9 3区 医学 Q2 NURSING Pub Date : 2019-07-01 DOI: 10.1177/1043454219859233
Belinda N Mandrell, Janice S Withycombe

The Children's Oncology Group Nursing Discipline has identified the most concerning symptoms during childhood cancer treatment and the need for continued symptom assessment and intervention during treatment trajectory. To develop appropriate interventions, symptom science strategies must explore the biological mechanisms associated with symptoms of cancer and cancer treatment. To explore the associated biological mechanisms, biomarkers have been recommended for inclusion in symptom science studies, when applicable. The biomarker assessed, as well as the method of collection and storage, can affect the reliability and validity of the study results and clinical implication. This review will describe biomarkers that have been described in pediatric oncology symptom science research and provides special considerations for specimen collection and processing.

儿童肿瘤组护理学科已经确定了儿童癌症治疗期间最关注的症状,以及在治疗过程中持续进行症状评估和干预的必要性。为了制定适当的干预措施,症状科学策略必须探索与癌症症状和癌症治疗相关的生物学机制。为了探索相关的生物学机制,建议在适用的情况下将生物标志物纳入症状科学研究。评估的生物标志物以及收集和储存的方法会影响研究结果的信度和效度以及临床意义。本文将介绍在儿童肿瘤症状科学研究中描述的生物标志物,并提供标本采集和处理的特殊注意事项。
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引用次数: 0
Symptoms in Children Receiving Treatment for Cancer-Part I: Fatigue, Sleep Disturbance, and Nausea/Vomiting. 接受癌症治疗的儿童的症状——第一部分:疲劳、睡眠障碍和恶心/呕吐
IF 1.9 3区 医学 Q2 NURSING Pub Date : 2019-07-01 DOI: 10.1177/1043454219849576
Mary C Hooke, Lauri A Linder

Children and adolescents with cancer often undergo intensive chemotherapy treatment to obtain remission and long-term survival. The pursuit of successful treatment outcomes may lead to high levels of symptom distress related to treatment side effects and toxicities. The Children's Oncology Group Nursing Discipline held a State of the Science Symposium "Symptom Assessment During Childhood Cancer Treatment" in 2018 that included reviews of evidence regarding key symptoms. The purpose of this review is to summarize and synthesize the evidence presented about the prevalence, relationships, trajectories, and associated biomarkers of selected symptoms experienced by children and adolescents during cancer treatment. Five symptoms were selected, with the focus on fatigue, sleep disturbance, and nausea/vomiting and included in Part I of the review. Using Ovid-Medline, studies published between 2008 and 2018 that focused on these specific symptoms during active chemotherapy treatment were selected. Fatigue interferes with normal developmental activities and is associated with sleep disturbances, and its pattern changes within a cycle of chemotherapy as well as across the treatment trajectory. Sleep is disrupted by the hospital environment, treatment medications, and changes in normal childhood and schedules. Disturbances of sleep persist during treatment, preventing recovery from poor quality sleep. Although pharmacologic interventions have advanced for treatment of nausea and vomiting, children and adolescents continue to struggle with this symptom. Its trajectory changes with the intensity of treatment, and over half of the patients report that they experience nausea and/or vomiting. Future research is needed to advance identification of biologic risk factors for symptoms and test effectiveness of symptom-related interventions.

癌症儿童和青少年经常接受强化化疗,以获得病情缓解和长期生存。追求成功的治疗结果可能会导致与治疗副作用和毒性相关的高水平症状困扰。儿童肿瘤小组护理学科于2018年举办了“儿童癌症治疗期间的症状评估”科学研讨会,其中包括对关键症状证据的审查。本综述的目的是总结和综合有关癌症治疗期间儿童和青少年所经历的选定症状的患病率、关系、轨迹和相关生物标志物的证据。选择了五种症状,重点是疲劳、睡眠障碍和恶心/呕吐,并将其纳入综述的第一部分。使用Ovid Medline,选择了2008年至2018年间发表的研究,这些研究集中在积极化疗期间的这些特定症状上。疲劳会干扰正常的发育活动,并与睡眠障碍有关,其模式在化疗周期内以及整个治疗过程中都会发生变化。睡眠受到医院环境、治疗药物以及正常童年和日程安排变化的干扰。在治疗期间,睡眠障碍持续存在,阻碍了从睡眠质量差中恢复过来。尽管药物干预在治疗恶心和呕吐方面取得了进展,但儿童和青少年仍在与这种症状作斗争。它的轨迹随着治疗强度的变化而变化,超过一半的患者报告说他们经历了恶心和/或呕吐。未来的研究需要推进症状生物风险因素的识别,并测试症状相关干预措施的有效性。
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引用次数: 0
Symptom Assessment During Childhood Cancer Treatment. 儿童癌症治疗期间的症状评估
IF 1.9 3区 医学 Q2 NURSING Pub Date : 2019-07-01 DOI: 10.1177/1043454219852611
Marilyn Hockenberry, Wendy Landier
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引用次数: 0
Consensus Recommendations From the Children’s Oncology Group Nursing Discipline’s State of the Science Symposium: Symptom Assessment During Childhood Cancer Treatment 来自儿童肿瘤组护理学科的科学状况研讨会的共识建议:儿童癌症治疗期间的症状评估
IF 1.7 3区 医学 Q2 NURSING Pub Date : 2019-07-01 DOI: 10.1177/1043454219854983
Janice S. Withycombe, M. Haugen, Sue Zupanec, C. F. Macpherson, W. Landier
Background: Recognizing and addressing illness-related distress has long been a priority for pediatric oncology nurses and the Children’s Oncology Group. Although symptoms are known to be highly prevalent during treatment for childhood cancer, there is currently no guidance for how often symptoms should be assessed, which symptoms should be prioritized for assessment, and how the data should be collected. Methods: The Nursing Discipline, within Children’s Oncology Group, hosted a one-day Interprofessional seminar titled “Symptom Assessment During Childhood Cancer Treatment: State of the Science Symposium.” Following the symposium, an expert panel was assembled to review all available evidence, including information presented and collected during the symposium. Consensus-building discussions were held to identify common themes and to produce recommendations for clinical practice. Results: Four recommendations emerged including (1) the identification of priority “core” symptoms for assessment; (2) inclusion of the child’s voice through self-report, when possible; (3) consistent documentation and communication of symptom assessment results; and (4) implementation of patient/family education related to symptoms. Discussion: Symptom recognition, through appropriate assessment, is the first step in symptom management. The goal for developing and sharing these recommendations is to promote consistent and comparable clinical practice across institutions in regard to symptom assessment during childhood cancer therapy. Integration of these recommendations will set the stage for future studies related to the frequency of symptoms across disease groups, projection of anticipated symptom trajectories, development of evidence-based teaching tools for common symptoms, and evaluation of patient outcomes with enhanced symptom assessment and management.
背景:认识和解决疾病相关的困扰一直是儿科肿瘤护士和儿童肿瘤组的优先事项。虽然已知症状在儿童癌症治疗期间非常普遍,但目前没有关于多久应该评估一次症状、哪些症状应该优先评估以及如何收集数据的指导。方法:护理学科,在儿童肿瘤组内,举办了为期一天的跨专业研讨会,题为“儿童癌症治疗期间的症状评估:科学状况研讨会”。研讨会结束后,成立了一个专家小组,审查所有现有证据,包括在研讨会期间提出和收集的信息。举行了建立共识的讨论,以确定共同主题并为临床实践提出建议。结果:提出了四项建议,包括(1)确定优先评估的“核心”症状;(2)在可能的情况下,通过自我报告纳入儿童的声音;(3)症状评估结果的一致记录和沟通;(4)实施与症状相关的患者/家庭教育。讨论:症状识别,通过适当的评估,是症状管理的第一步。制定和分享这些建议的目标是促进各机构在儿童癌症治疗期间症状评估方面的一致和可比较的临床实践。这些建议的整合将为未来的研究奠定基础,这些研究涉及疾病组间症状的频率、预测预期的症状轨迹、开发针对常见症状的循证教学工具,以及通过加强症状评估和管理来评估患者结果。
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引用次数: 17
Symptoms in Children Receiving Treatment for Cancer-Part II: Pain, Sadness, and Symptom Clusters. 接受癌症治疗的儿童的症状——第二部分:疼痛、悲伤和症状群
IF 1.9 3区 医学 Q2 NURSING Pub Date : 2019-07-01 DOI: 10.1177/1043454219849578
Lauri A Linder, Mary C Hooke

Children and adolescents receiving treatment for cancer experience multiple symptoms as a consequence of their disease and its treatment that interfere with the child's quality of life. Understanding of symptom assessment in children with cancer is foundational to the work of the Children's Oncology Group Nursing Discipline, whose research aims are to address knowledge gaps including understanding illness-related distress. This article is the second of a two-part summary of current evidence addressing the assessment of symptoms frequently reported by children and adolescents receiving treatment for cancer. Studies reporting assessment of pain, sadness, and symptom clusters published between January 2008 and May 2018 were included. Forty-three publications addressed pain. Pain was highly prevalent and distressing, varied in its trajectory across a cycle of chemotherapy and across multiple cycles of treatment, and correlated with biomarkers associated with the pain response. Consequences of pain were poorer functional status and emotional health. Twenty publications addressed sadness. Sadness was the most prevalent psychosocial symptom. Its prevalence decreased over the course of treatment and over a cycle of chemotherapy. Persistent sadness was of greater severity and distress. Eight publications addressed symptom clusters. These studies identified both groups of co-occurring symptoms and groups of patients with common symptom profiles. This two-article series provides evidence for the distressing nature of symptoms among children receiving cancer treatment. Efforts to support clinicians in routine symptom assessment are needed. Additional research directed at alleviating symptoms and building resilience among the child experiencing symptoms is needed.

接受癌症治疗的儿童和青少年因其疾病及其治疗而出现多种症状,这些症状会干扰儿童的生活质量。了解癌症儿童的症状评估是儿童肿瘤小组护理学科工作的基础,该学科的研究目标是解决知识差距,包括了解与疾病相关的痛苦。这篇文章是由两部分组成的当前证据摘要的第二部分,涉及对接受癌症治疗的儿童和青少年经常报告的症状的评估。包括2008年1月至2018年5月期间发表的疼痛、悲伤和症状群评估研究。43份出版物论述了疼痛。疼痛非常普遍和令人痛苦,在一个化疗周期和多个治疗周期中其轨迹各不相同,并与疼痛反应相关的生物标志物相关。疼痛的后果是较差的功能状态和情绪健康。二十种出版物都是关于悲伤的。悲伤是最普遍的心理社会症状。它的患病率随着治疗过程和化疗周期的推移而下降。持续的悲伤更为严重和痛苦。八份出版物涉及症状群。这些研究确定了两组共同出现的症状和具有共同症状特征的患者。这两篇文章的系列文章为接受癌症治疗的儿童的痛苦症状提供了证据。需要努力支持临床医生进行常规症状评估。需要进行更多的研究,以缓解症状并在出现症状的儿童中建立复原力。
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引用次数: 0
Participation in Online Research Examining End-of-Life Experiences: Is It Beneficial, Burdensome, or Both for Parents Bereaved by Childhood Cancer? 参与在线研究检查临终经历:对因儿童癌症而失去亲人的父母是有益的,是负担,还是两者兼而有之?
IF 1.7 3区 医学 Q2 NURSING Pub Date : 2019-05-01 DOI: 10.1177/1043454219836963
Julia Tager, Haven Battles, Sima Zadeh Bedoya, Cynthia A Gerhardt, Tammi Young-Saleme, Lori Wiener

It is important for the health care community to understand the impact of a child's death on parent functioning. Yet involving bereaved parents in research that enquires about such a stressful time in their life can potentially bring harm to them. The current study examines the perceived benefit and burden of parents participating in a survey exploring their perceptions of their child's end-of-life (EoL) and bereavement experiences. Parents whose child died from cancer or complications of cancer treatment were invited to complete a survey developed by pediatric psychosocial oncology professionals with input from bereaved parent advocates through a closed social media (Facebook) group. One hundred seventy-eight parents of children aged 0 to 37 years at death (median age 12 years) participated. More than three quarters of parents reported at least "a little benefit" and half reported at least "a little burden" associated with participation. Less burden was perceived by younger and female parents, parents of younger children, those who had felt prepared to meet their children's emotional needs at EoL, and those not using bereavement services at the time of the survey. With the increasing use of social media as a source for bereaved parents to receive and provide emotional support, it is important for clinicians and researchers to understand the perceived benefits and risks of participating in research about EoL experiences via online recruitment. Our findings suggest that the benefit and burden of online research participation may vary for bereaved parents, but further research is necessary to replicate the findings and explore ways to optimize the use of this approach.

对卫生保健社区来说,了解儿童死亡对父母功能的影响是很重要的。然而,让失去亲人的父母参与研究,询问他们生活中如此紧张的时期,可能会给他们带来伤害。目前的研究考察了参与一项调查的父母对孩子生命终结(EoL)和丧亲经历的看法的感知利益和负担。孩子死于癌症或癌症治疗并发症的父母被邀请完成一项由儿科社会心理肿瘤学专业人员开发的调查,并通过一个封闭的社交媒体(Facebook)小组获得了丧亲父母倡导者的意见。178名子女死亡时年龄在0至37岁(中位年龄为12岁)的父母参与了调查。超过四分之三的父母表示至少“有一点好处”,一半的父母表示至少“有一点负担”。年龄较小的父母和女性父母、年幼子女的父母、在EoL时已准备好满足子女情感需求的父母以及在调查时未使用丧亲服务的父母认为负担较轻。随着越来越多的人使用社交媒体作为丧亲父母接受和提供情感支持的来源,临床医生和研究人员必须了解通过在线招聘参与有关丧亲经历的研究的预期收益和风险。我们的研究结果表明,参与在线研究的好处和负担可能对失去亲人的父母有所不同,但需要进一步的研究来复制这些发现,并探索优化使用这种方法的方法。
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引用次数: 11
期刊
Journal of Pediatric Oncology Nursing
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