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Evaluation Tools for Physical Activity Programs for Childhood Cancer: A Scoping Review. 儿童癌症体育活动项目的评估工具:范围综述。
IF 1.9 3区 医学 Q2 NURSING Pub Date : 2020-05-01 Epub Date: 2019-12-18 DOI: 10.1177/1043454219891987
Jena Shank, Carolina Chamorro-Viña, Gregory M T Guilcher, David Michael Langelier, Fiona Schulte, S Nicole Culos-Reed

Research on the benefits of physical activity (PA) in childhood cancer has been translated into a handful of community-based programs. However, to foster further translation, an understanding of how to evaluate participant outcomes would be beneficial to provide feedback to participants and stimulate future research. Such a review would provide a summary of acceptable tools for work in this area. The purpose of this scoping review was to identify the evaluation tools that have been used in PA/exercise studies or programs for childhood cancer. This review was conducted using the Preferred Reporting Items for Systematic Reviews and Meta-Analyses guidelines. Studies included in the review used physical and psychosocial evaluation tools within PA and exercise programs or research for childhood cancer. In addition, studies with measures of health behavior such as PA levels and activities of daily living were included. Tools that assessed physical fitness and physical performance were excluded. Information on the types of evaluation tools used, mean age of participants, and type of cancer was extracted. Psychometric properties of each evaluation tool are reported. The most commonly assessed patient outcomes were motor performance, fatigue, well-being, functional mobility, and quality of life. Less commonly reported patient outcomes were hope, self-efficacy, and self-perception. None of the evaluation tools reported in the PA/exercise and pediatric oncology literature assess physical literacy. This review was the first step in a knowledge translation process, identifying evaluation tools that have been used in PA/exercise programs in childhood cancer survivors, that will guide the development and evaluation of current and future community-based programs.

关于体育活动(PA)对儿童癌症的益处的研究已经转化为少数社区项目。然而,为了促进进一步的翻译,了解如何评估参与者的结果将有助于为参与者提供反馈并促进未来的研究。这样的审查将为这一领域的工作提供可接受的工具摘要。这项范围审查的目的是确定在儿童癌症的PA/运动研究或项目中使用的评估工具。本综述采用系统评价和荟萃分析指南的首选报告项目进行。综述中包括的研究在PA和运动项目或儿童癌症研究中使用了身体和心理社会评估工具。此外,研究还包括对健康行为的测量,如PA水平和日常生活活动。评估身体健康和身体表现的工具被排除在外。提取了所使用的评估工具类型、参与者的平均年龄和癌症类型的信息。报告了每种评估工具的心理测量特性。最常评估的患者结果是运动表现、疲劳、健康、功能活动能力和生活质量。较少报道的患者结果是希望、自我效能和自我感知。在PA/运动和儿科肿瘤学文献中,没有一种评估工具可以评估身体素养。这篇综述是知识转化过程的第一步,确定了在儿童癌症幸存者的PA/运动项目中使用的评估工具,这将指导当前和未来社区项目的发展和评估。
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引用次数: 0
Predictors of Overweight and Obesity in Childhood Cancer Survivors. 儿童癌症幸存者超重和肥胖的预测因素。
IF 1.7 3区 医学 Q2 NURSING Pub Date : 2020-05-01 Epub Date: 2020-01-06 DOI: 10.1177/1043454219897102
Bonnie Gance-Cleveland, Anna Linton, Jaron Arbet, Debra Stiller, Genevieve Sylvain
Purpose: The purpose of this study was to explore the potential risk factors for overweight/obesity in survivors of childhood cancer. Design: A retrospective chart review of childhood cancer survivors (N = 321) seen in a cancer survivor clinic was conducted to determine the strongest risks of overweight/obesity. Risk factors were as follows: age, race, gender, cancer diagnosis, body mass index at diagnosis, and treatment. Multivariate logistic regression was used to identify risks of overweight/obesity while simultaneously adjusting for other patient factors. Findings: Data suggested that female cancer survivors, Hispanics, those with higher body mass index at diagnosis, and those with longer duration of treatment had greater odds of being overweight/obese. Conclusions: Many of the risk factors for overweight/obesity in childhood cancer survivors are consistent with the general population, and length of cancer treatment is unique to this population. Implications for Nursing: Findings from this study will inform care for childhood cancer survivors to improve long-term cardiovascular health.
目的:本研究的目的是探讨儿童癌症幸存者超重/肥胖的潜在危险因素。设计:对癌症幸存者诊所的儿童癌症幸存者(N = 321)进行回顾性图表回顾,以确定超重/肥胖的最大风险。危险因素如下:年龄、种族、性别、癌症诊断、诊断时的体重指数和治疗。采用多变量逻辑回归来确定超重/肥胖的风险,同时调整其他患者因素。研究结果:数据表明,女性癌症幸存者、西班牙裔、诊断时体重指数较高的人、治疗时间较长的人超重/肥胖的几率更大。结论:儿童癌症幸存者超重/肥胖的许多危险因素与一般人群一致,癌症治疗的长度对这一人群是独特的。对护理的启示:本研究的发现将为儿童癌症幸存者的护理提供信息,以改善长期心血管健康。
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引用次数: 6
A Literature Review of Racial Disparities in Overall Survival of Black Children With Acute Lymphoblastic Leukemia Compared With White Children With Acute Lymphoblastic Leukemia. 黑人急性淋巴细胞白血病患儿与白人急性淋巴细胞白血病患儿总体生存率的种族差异文献综述
IF 1.7 3区 医学 Q2 NURSING Pub Date : 2020-05-01 Epub Date: 2020-02-24 DOI: 10.1177/1043454220907547
Ijeoma Julie Eche, Teri Aronowitz

Despite major advances in acute lymphoblastic leukemia [ALL] treatment, poorer overall survival (OS) persists for Black children with ALL compared with White children with ALL. The purpose of this literature review was to examine the racial disparities on OS in Black versus White children with ALL. The Cumulative Index to Nursing and Allied Health Literature (CINAHL), Medline, PubMed, and Academic Search Complete databases were searched using the Medical Subject Heading (MeSH) terms: survival or mortality or outcome AND black or African-American or AA or minority AND racial disparities or race or racial/ethnic disparities AND cancer in children or pediatric cancer or children with leukemia or children with ALL for articles published in English between January 2009 and July 2019. Exclusion criteria were non-research articles, systematic reviews, conference abstracts, editorials, commentaries, correspondence, and case reports. Using the Preferred Reporting Items for Systematic Reviews and Meta-Analyses guidelines, data were extracted, appraised, and synthesized. Sixteen articles met the inclusion criteria. Sample sizes across studies ranged from 184 to 31,866 participants. The factors most associated with disparities in OS included: age at diagnosis (e.g., <1 year and/or >10 years old), differences in clinical prognosticators (e.g., white blood cell count at diagnosis, T-cell vs. precursor B-cell immunophenotype, central nervous system disease status, cytogenetic profile) and lower socioeconomic status. Future prospective studies are needed to elucidate the role of these factors in OS of Black children with ALL.

尽管急性淋巴细胞白血病(acute lymphoblastic leukemia, ALL)治疗取得了重大进展,但黑人儿童的总生存期(OS)仍低于白人儿童。本文献综述的目的是研究ALL黑人和白人儿童OS的种族差异。使用医学主题标题(MeSH)术语对护理和相关健康文献累积索引(CINAHL)、Medline、PubMed和学术检索完整数据库进行检索:生存或死亡率或结局、黑人或非裔美国人、AA或少数民族、种族差异、种族或种族/民族差异、儿童癌症或儿科癌症或白血病儿童或ALL儿童中发表的2009年1月至2019年7月的英文文章。排除标准是非研究文章、系统综述、会议摘要、社论、评论、通信和病例报告。使用系统评价和荟萃分析指南的首选报告项目,提取、评估和合成数据。16篇文章符合纳入标准。研究的样本量从184到31866名参与者不等。与OS差异最相关的因素包括:诊断时的年龄(如10岁)、临床预后指标的差异(如诊断时的白细胞计数、t细胞与前体b细胞免疫表型、中枢神经系统疾病状态、细胞遗传学特征)和较低的社会经济地位。未来的前瞻性研究需要阐明这些因素在ALL黑人儿童OS中的作用。
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引用次数: 9
Letting Kids Be Kids: A Quality Improvement Project to Deliver Supportive Care at Home After High-Dose Methotrexate in Pediatric Patients With Acute Lymphoblastic Leukemia [Formula: see text]. 让孩子做孩子:为急性淋巴细胞白血病儿童患者提供大剂量甲氨蝶呤治疗后居家支持性护理的质量改进项目[公式:见正文]。
IF 1.7 3区 医学 Q2 NURSING Pub Date : 2020-05-01 Epub Date: 2020-02-26 DOI: 10.1177/1043454220907549
Lori Ranney, Mary C Hooke, Kathryn Robbins

The Children's Oncology Group recommends children with high-risk acute lymphoblastic leukemia (ALL) receive high-dose methotrexate (HD MTX) throughout treatment. Historically, patients have been hospitalized for at least 54 hours for HD MTX. Literature supports the safety and efficacy of the transition of supportive care interventions of intravenous (IV) fluids and leucovorin to ambulatory care. The goal of this quality improvement (QI) project was to implement a system to support the safe delivery of supportive care in the home after inpatient HD MTX in children with high-risk ALL. An interdisciplinary team implemented system changes including an ambulatory supportive care protocol, standard computerized order sets, family education, and education of staff in the inpatient, outpatient, and home care setting. Measurements included laboratory results of renal function and medication clearance, length of hospitalization, and family-reported quality of life. During project implementation, 10 patients completed a total of 38 cycles. The system safely and effectively supported transition to the outpatient setting for all patients. Average length of stay was decreased by 37.8 hours per HD MTX cycle. Families reported that quality of life improved in most domains with family time and sleep having largest improvement, while level of stress remained the same. Ambulatory monitoring post-HD MTX requires a multidisciplinary approach to meet individualized patient needs. Future QI efforts should consider outpatient administration of HD MTX in addition to supportive care as a means to improved quality of life.

儿童肿瘤组织建议高危急性淋巴细胞白血病(ALL)患儿在整个治疗过程中接受大剂量甲氨蝶呤(HD MTX)治疗。一直以来,患者住院接受 HD MTX 治疗的时间至少为 54 小时。文献支持将静脉输液和亮菌甲素等支持性护理干预措施过渡到非卧床护理的安全性和有效性。本质量改进(QI)项目的目标是实施一套系统,支持在高危 ALL 患儿住院接受 HD MTX 治疗后在家中安全提供支持性护理。一个跨学科团队实施了系统改革,包括非住院支持性护理方案、标准计算机化医嘱集、家庭教育以及对住院、门诊和家庭护理环境中的工作人员进行教育。衡量标准包括肾功能和药物清除率的化验结果、住院时间以及家属报告的生活质量。在项目实施期间,10 名患者共完成了 38 个周期的治疗。该系统安全有效地支持了所有患者向门诊环境的过渡。每个 HD MTX 周期的平均住院时间缩短了 37.8 小时。据患者家属报告,他们在大多数方面的生活质量都得到了改善,其中家庭时间和睡眠改善最大,而压力水平则保持不变。HD MTX 治疗后的非住院监测需要多学科方法来满足患者的个性化需求。未来的质量改进工作除了支持性护理外,还应考虑在门诊使用 HD MTX,以此提高生活质量。
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引用次数: 7
Decreasing Central Line-Associated Bloodstream Infections Acquired in the Home Setting Among Pediatric Oncology Patients [Formula: see text]. 减少小儿肿瘤患者在家庭环境中获得的中心线相关血流感染[公式:见文本]。
IF 1.7 3区 医学 Q2 NURSING Pub Date : 2020-05-01 Epub Date: 2020-02-26 DOI: 10.1177/1043454220907551
Diane Altounji, Rachel McClanahan, Roxanne O'Brien, Paula Murray

Most children receiving cancer treatment require a central venous catheter (CVC), putting them at risk for central line-associated bloodstream infections (CLABSI). As patients are discharged home with a CVC in place, caregivers are expected to maintain the CVC following an in-hospital education session before their first discharge home. Following a review of the literature, the education process was modified to improve the quality of education for caregivers. While the existing step-by-step handbook was reviewed and deemed aligned with best practices, other materials were added for this project: a caregiver skills competency checklist, a handout reviewing oral care and hygiene in the home, and a guide for nurses on what materials to provide families at the time of diagnosis. Additionally, caregivers were required to receive two additional CVC care reinforcement sessions during subsequent admissions to the inpatient units, which involved redemonstrations of skills using the competency checklist. Home-acquired CLABSI in pre- and postintervention groups were compared, and compliance of reinforcement education was measured. Though no statistical significance was found, the odds of experiencing a CLABSI were found to be higher in the preintervention group for mucosal-barrier injury (odds ratio = 2.23; 95% confidence interval [0.43, 22.10]) and laboratory-confirmed bloodstream infections (odds ratio = 4.53; 95% confidence interval [0.59, 203.71]). The clinical significance of reducing home-acquired CLABSI has a positive impact on patient outcomes by decreasing morbidity and mortality, inpatient lengths of stay, and overall health care costs.

大多数接受癌症治疗的儿童需要中心静脉导管(CVC),这使他们面临中心静脉相关血流感染(CLABSI)的风险。当患者出院回家时,CVC已经到位,护理人员希望在他们第一次出院回家之前进行院内教育课程后保持CVC。在回顾文献后,教育过程被修改以提高照顾者的教育质量。在审查了现有的分步手册并认为符合最佳实践的同时,本项目还增加了其他材料:护理人员技能能力清单,一份关于家庭口腔护理和卫生的讲义,以及一份关于护士在诊断时向家庭提供哪些材料的指南。此外,护理人员被要求在随后的住院期间接受两次额外的CVC护理强化课程,其中包括使用能力清单重新展示技能。比较干预前后两组家庭获得性CLABSI,并测量强化教育的依从性。虽然没有发现统计学意义,但发现粘膜屏障损伤的干预前组发生CLABSI的几率更高(优势比= 2.23;95%可信区间[0.43,22.10])和实验室确诊的血液感染(优势比= 4.53;95%置信区间[0.59,203.71])。减少家庭获得性CLABSI的临床意义通过降低发病率和死亡率、住院时间和总体卫生保健成本对患者结局产生积极影响。
{"title":"Decreasing Central Line-Associated Bloodstream Infections Acquired in the Home Setting Among Pediatric Oncology Patients [Formula: see text].","authors":"Diane Altounji,&nbsp;Rachel McClanahan,&nbsp;Roxanne O'Brien,&nbsp;Paula Murray","doi":"10.1177/1043454220907551","DOIUrl":"https://doi.org/10.1177/1043454220907551","url":null,"abstract":"<p><p>Most children receiving cancer treatment require a central venous catheter (CVC), putting them at risk for central line-associated bloodstream infections (CLABSI). As patients are discharged home with a CVC in place, caregivers are expected to maintain the CVC following an in-hospital education session before their first discharge home. Following a review of the literature, the education process was modified to improve the quality of education for caregivers. While the existing step-by-step handbook was reviewed and deemed aligned with best practices, other materials were added for this project: a caregiver skills competency checklist, a handout reviewing oral care and hygiene in the home, and a guide for nurses on what materials to provide families at the time of diagnosis. Additionally, caregivers were required to receive two additional CVC care reinforcement sessions during subsequent admissions to the inpatient units, which involved redemonstrations of skills using the competency checklist. Home-acquired CLABSI in pre- and postintervention groups were compared, and compliance of reinforcement education was measured. Though no statistical significance was found, the odds of experiencing a CLABSI were found to be higher in the preintervention group for mucosal-barrier injury (odds ratio = 2.23; 95% confidence interval [0.43, 22.10]) and laboratory-confirmed bloodstream infections (odds ratio = 4.53; 95% confidence interval [0.59, 203.71]). The clinical significance of reducing home-acquired CLABSI has a positive impact on patient outcomes by decreasing morbidity and mortality, inpatient lengths of stay, and overall health care costs.</p>","PeriodicalId":50093,"journal":{"name":"Journal of Pediatric Oncology Nursing","volume":"37 3","pages":"204-211"},"PeriodicalIF":1.7,"publicationDate":"2020-05-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://sci-hub-pdf.com/10.1177/1043454220907551","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"37680244","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":3,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
引用次数: 7
Creative Arts Therapy in the Context of Children With Cancer: A Concept Analysis 癌症儿童创造性艺术治疗的概念分析
IF 1.7 3区 医学 Q2 NURSING Pub Date : 2020-03-01 DOI: 10.1177/1043454219878397
Jennifer L. Raybin, M. Krajicek
Aim: To report an analysis of the concept of creative arts therapy (CAT) in the context of pediatric cancer. Background: Literature supports the intuitive conclusion that creative interventions improve a patient’s journey through the cancer trajectory. However, a new definition is needed to encompass CAT and creative expression interventions in order to better understand the concept of creativity in health care, specifically in pediatric oncology. Design: Concept analysis. Data Sources: The scientific databases CINAHL, PsycInfo (Ovid), AMED (Allied and Complementary Medicine), and PubMed were queried for English language research articles published between 2008 and 2018 using the search terms: creative arts therapy and cancer. Method: The Walker and Avant method of concept analysis was implemented. Results: CAT is a broad concept bringing creative arts in a therapeutic manner to children with cancer. Attributes include expression of feelings; creating art, music, or movement; and improvement of symptoms. CAT is frequently measured using quality of life and symptom assessment scales. Antecedents include the diagnosis of cancer, the distress caused by cancer, and a child’s willingness to participate in creative activity. Consequences include improved quality of life, improved sense of well-being, decreased psychosocial symptoms, and less cancer pain. Conclusion: The literature supports CAT as a concept that may decrease distress for children with cancer.
目的:分析儿童癌症治疗中创造性艺术治疗的概念。背景:文献支持这样一个直观的结论,即创造性干预可以改善患者的癌症发展历程。然而,需要一个新的定义来涵盖CAT和创造性表达干预措施,以便更好地理解卫生保健,特别是儿科肿瘤学中的创造性概念。设计:概念分析。数据来源:在科学数据库CINAHL、PsycInfo (Ovid)、AMED (Allied and Complementary Medicine)和PubMed中查询了2008年至2018年间发表的英语研究文章,搜索词为:创造性艺术疗法和癌症。方法:采用Walker和Avant概念分析法。结果:CAT是一个宽泛的概念,将创造性艺术以治疗的方式带给患有癌症的儿童。属性包括情感的表达;创造艺术、音乐或运动的;以及症状的改善CAT通常使用生活质量和症状评估量表进行测量。前因包括癌症的诊断,癌症引起的痛苦,以及孩子参与创造性活动的意愿。结果包括改善生活质量,改善幸福感,减少心理社会症状,减少癌症疼痛。结论:文献支持CAT作为一个概念,可以减少患癌儿童的痛苦。
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引用次数: 14
Development and Content Validation of End of Treatment Questionnaires for Children With Cancer 癌症儿童治疗结束问卷的编制与内容验证
IF 1.7 3区 医学 Q2 NURSING Pub Date : 2020-03-01 DOI: 10.1177/1043454219878392
Mary Conway Keller, T. Ruiz, Andrew Needham, Courtney King, L. Hart, E. Holden, R. Lucas
Purpose: To describe the development and content validation of measures to assess the psychoeducational needs of children, adolescents/young adults (AYAs), and their parents at the end of successful treatment for cancer. Method: Professional experts, which included pediatric oncology nurses and advanced practice registered nurses, conducted a systematic review of the literature to determine specific end of treatment (EOT) needs of children and AYAs with cancer and their parents and evaluate available tools to measure these needs. From this review, two EOT questionnaires were initially developed. Oncology Family Advisory Board (FAB) members served as experiential experts in refining and validating these questionnaires. FAB members participated in a content validation process, rating questionnaires online, and subsequently participating in a focus group to establish content validity (n = 6). Results: Three EOT questionnaires were ultimately developed. The Child/AYA questionnaire was divided into two separate measures for developmental and literacy considerations. The Parent/Caregiver and the AYA questionnaires each contain 38 items with a content validity index score of 100%. The Child questionnaire contains 37 items with a content validity index score of 100%. Conclusion: Content validity was established for three EOT questionnaires, each of which has the potential to elicit information regarding needs and potential gaps in services perceived by childhood cancer survivors and their parents. Further psychometric testing is needed to determine stability (test–retest reliability) and construct validity of the questionnaires.
目的:描述癌症治疗结束时评估儿童、青少年/年轻人(AYAs)及其父母心理教育需求的措施的制定和内容验证。方法:包括儿科肿瘤科护士和高级执业注册护士在内的专业专家对文献进行了系统回顾,以确定癌症儿童和AYA及其父母的具体治疗结束(EOT)需求,并评估测量这些需求的可用工具。根据这篇综述,最初编制了两份EOT问卷。肿瘤家族咨询委员会(FAB)成员在完善和验证这些问卷时充当了经验专家。FAB成员参与了内容验证过程,在线对问卷进行评分,随后参加了一个焦点小组,以确定内容的有效性(n=6)。结果:最终编制了三份EOT问卷。儿童/AYA问卷分为两个单独的衡量标准,分别用于发展和识字。家长/看护人和AYA问卷各包含38个项目,内容有效性指数得分为100%。儿童问卷包含37个项目,内容有效性指数得分为100%。结论:建立了三份EOT问卷的内容有效性,每一份问卷都有可能引发关于癌症儿童幸存者及其父母所感知的服务需求和潜在差距的信息。需要进一步的心理测量测试来确定问卷的稳定性(测试-再测试可靠性)和结构有效性。
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引用次数: 2
2019 Reviewer Thank You 2019审稿人谢谢
IF 1.7 3区 医学 Q2 NURSING Pub Date : 2020-01-30 DOI: 10.1177/1043454220903947
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引用次数: 0
Pretend Play as an Intervention for Children With Cancer: A Feasibility Study 假装游戏对癌症儿童的干预:可行性研究
IF 1.7 3区 医学 Q2 NURSING Pub Date : 2020-01-01 DOI: 10.1177/1043454219874695
Sara Frygner-Holm, S. Russ, J. Quitmann, L. Ring, Olena Zyga, M. Hansson, G. Ljungman, A. Höglund
Children with cancer suffer from symptoms and burdensome treatments that often cause distress to children and their families. Mortality is one aspect of cancer diagnosis, while another is the quality of life and well-being during and after the treatment. By supporting children’s communication, self-efficacy and coping ability in the care situation, children are given the possibilities for increased independence and participation and are allowed to develop an influence over their care. The aim of this study was to develop and evaluate the feasibility and acceptability of an adult-facilitated pretend play intervention for children with cancer. Five children with ongoing treatment for cancer were invited to a play intervention that consisted of six to eight sessions of structured pretend play aimed at increasing participation, independence, and well-being. A mixed method design was used to evaluate the feasibility and acceptability of the play intervention. Measures were collected before and after interventions, and in conjunction with every play session. Results suggest that the children enjoyed the play intervention. Findings indicate small improvements regarding self-efficacy in care situations and equal or increased quality of life for participants. A main finding was that no adverse events or increased worrying was reported in conjunction with play sessions. Therefore, the intervention is regarded as safe, feasible, and acceptable as reported by participants and their primary caregivers and a possible means of increasing participation and independence in children with a cancer diagnosis.
癌症儿童的症状和繁重的治疗往往会给儿童及其家人带来痛苦。死亡率是癌症诊断的一个方面,而另一个方面是治疗期间和之后的生活质量和幸福感。通过支持儿童在护理环境中的沟通、自我效能和应对能力,儿童有可能获得更多的独立性和参与性,并被允许对他们的护理产生影响。本研究的目的是开发和评估癌症儿童的成人辅助假装游戏干预的可行性和可接受性。五名正在接受癌症治疗的儿童被邀请参加一项游戏干预,其中包括六到八次结构化的假装游戏,旨在提高参与度、独立性和幸福感。采用混合方法设计来评估游戏干预的可行性和可接受性。在干预之前和之后,以及在每次游戏环节中收集测量值。结果表明,孩子们喜欢游戏干预。研究结果表明,在护理情况下,参与者的自我效能感略有改善,生活质量平等或提高。一项主要发现是,在游戏过程中没有报告不良事件或增加担忧。因此,根据参与者及其主要照顾者的报告,干预被认为是安全、可行和可接受的,也是增加癌症诊断儿童参与和独立性的可能手段。
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引用次数: 9
Barriers to Palliative Care in Pediatric Oncology in Switzerland: A Focus Group Study 瑞士儿童肿瘤姑息治疗的障碍:一项焦点小组研究
IF 1.7 3区 医学 Q2 NURSING Pub Date : 2020-01-01 DOI: 10.1177/1043454219871082
M. Rost, E. De Clercq, M. Rakic, T. Wangmo, B. Elger
Introduction: For children with cancer, early integration of pediatric palliative care in conjunction with curative treatments is recommended. In Switzerland, pediatric palliative care is mostly provided by an interdisciplinary primary oncology team that is mainly composed of nurses. However, only a small fraction of children receive pediatric palliative care and only a minority of them in a timely manner. The main aim was to identify barriers to the provision of pediatric palliative care in Swiss pediatric oncology. Method: This qualitative study consisted of five focus groups. In total, 29 pediatric oncology providers participated (13 nurses, 11 physicians, 4 psycho-oncologists, 1 social worker). Data were analyzed employing applied thematic analysis. Results: Analysis revealed eleven barriers: lack of financial resources, lack of prejob education regarding pediatric palliative care, lack of awareness in politics and policy making, absence of a well-established nationwide bridging care system, insufficient psychosocial and professional supervision for staff, understaffing, inadequate infrastructure of hospitals, asymmetry of factual and emotional knowledge between parents and providers, cultural aspects, irrational parental hopes, and “the unspoken.” Discussion: Awareness should be raised for pediatric palliative care (in particular in demarcation from palliative care in adults) among politics and policy makers which could lead to increased financial resources that, in turn, could be used to improve bridging care, hospital’s infrastructure, and team support. More flexibility for care determining factors is needed, for example, with respect to convening team meetings, short-termed staffing, and reimbursement at the interface between inpatient and outpatient services.
简介:对于癌症儿童,建议早期将儿科姑息治疗与治疗相结合。在瑞士,儿科姑息治疗主要由主要由护士组成的跨学科初级肿瘤学团队提供。然而,只有一小部分儿童得到了儿科姑息治疗,只有少数儿童得到了及时的治疗。主要目的是确定瑞士儿科肿瘤学中提供儿科姑息治疗的障碍。方法:这项定性研究由五个焦点小组组成。共有29名儿科肿瘤学提供者参与(13名护士、11名医生、4名心理肿瘤学家和1名社会工作者)。采用应用专题分析法对数据进行分析。结果:分析揭示了11个障碍:缺乏财政资源,缺乏儿科姑息治疗的岗前教育,缺乏政治和政策制定意识,缺乏完善的全国性桥接护理系统,对工作人员的心理和专业监督不足,人手不足,医院基础设施不足,父母和提供者之间事实和情感知识的不对称、文化方面、父母非理性的希望和“潜台词”。讨论:政治和政策制定者应该提高对儿科姑息治疗(特别是与成人姑息治疗的区分)的认识,这可能会导致财政资源的增加,可用于改善桥接护理、医院基础设施和团队支持。护理决定因素需要更大的灵活性,例如,在召开团队会议、短期人员配置以及住院和门诊服务之间的报销方面。
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引用次数: 23
期刊
Journal of Pediatric Oncology Nursing
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