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Exploring Caregiver Learning and Experiences Caring for a Child With Heart Failure: A Qualitative Study 探索照顾者学习和照顾心衰患儿的经验:定性研究
Pub Date : 2024-08-01 DOI: 10.1016/j.cjcpc.2024.05.003

Background

Paediatric heart failure poses life-long, burdensome symptoms for the health care system and families. Diagnosis and discharge are stressful and anxiety-provoking for caregivers. They face uncertainty about their child’s health and become responsible for administering complex care in the home. Little is known about this topic. Our study aimed to explore caregiver learning and experiences caring for a child with heart failure to design and implement a knowledge translation tool.

Methods

Qualitative description guided our study. Recruitment occurred in a tertiary cardiac centre in Edmonton, Alberta, Canada. Data collection and analysis occurred concurrently until data redundancy was achieved. Inductive conventional content analysis was used to develop categories.

Results

Eleven interviews identified 2 main categories. One relates to how traumatic life experiences impact learning (eg, new diverse ways of learning, stress steepens the learning curve, and learning heart failure takes time). The other relates to families’ new life reality after diagnosis (eg, emotional distress and the new reality).

Conclusions

This study provides insight into caregivers’ learning needs and experiences caring for a child with heart failure. Caregivers describe how the trauma of having their child diagnosed with heart failure negatively impacts their learning capabilities and way of life going forward. Caregiver learning experiences and preferences for digital platforms is also highlighted. This knowledge will inform the design of an online educational tool about pediatric heart failure for caregiver audiences. This tool will empower and improve caregiver decision-making related to their child’s daily heart failure management, with the goal to positively impact clincal outcomes, lessen stress and anxiety.

背景小儿心力衰竭给医疗系统和家庭带来终生的负担。诊断和出院对护理人员来说是一种压力和焦虑。他们要面对孩子健康状况的不确定性,并负责在家中进行复杂的护理。人们对此知之甚少。我们的研究旨在探索护理人员在护理心衰患儿时的学习和经验,从而设计并实施一种知识转化工具。我们在加拿大艾伯塔省埃德蒙顿市的一家三级心脏病中心进行了招募。数据收集和分析同时进行,直至实现数据冗余。我们采用归纳式传统内容分析法对数据进行分类。其中一个涉及创伤性生活经历如何影响学习(例如,新的多样化学习方式、压力使学习曲线陡峭化、学习心力衰竭需要时间)。结论本研究深入探讨了照顾者的学习需求和照顾心衰患儿的经历。照顾者描述了他们的孩子被诊断为心力衰竭所带来的创伤是如何对他们的学习能力和今后的生活方式产生负面影响的。护理人员的学习经验和对数字平台的偏好也得到了强调。这些知识将为设计面向护理人员受众的小儿心力衰竭在线教育工具提供参考。该工具将增强和改善护理人员在日常心衰管理方面的决策能力,从而对临床结果产生积极影响,减轻压力和焦虑。
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引用次数: 0
Information for Readers 读者信息
Pub Date : 2024-08-01 DOI: 10.1016/S2772-8129(24)00063-0
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引用次数: 0
Severe Inflammatory Heart Disease in Children With Lupus: A Case Series 狼疮患儿的严重炎症性心脏病:病例系列
Pub Date : 2024-08-01 DOI: 10.1016/j.cjcpc.2024.05.005
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引用次数: 0
Nonfatal Isolated Cardiac Nonlysosomal Glycogenosis: A Rare Cause of Infantile Hypertrophic Cardiomyopathy 非致命性孤立性心脏非溶酶体糖原病:婴儿肥厚型心肌病的罕见病因
Pub Date : 2024-08-01 DOI: 10.1016/j.cjcpc.2024.02.003
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引用次数: 0
Strategies to Overcome Barriers to Physical Activity Participation in Children and Adults Living With Congenital Heart Disease: A Narrative Review 克服先天性心脏病儿童和成人参加体育活动障碍的策略。叙述性综述
Pub Date : 2024-08-01 DOI: 10.1016/j.cjcpc.2024.05.002

Physical activity participation is critical for optimal physical, psychological, and cognitive health in children and adults living with congenital heart disease (CHD). Majority of the general population are not sufficiently active, and with the added psychological, physical, and socioeconomic barriers faced by individuals with CHD, it is unsurprising that many people living with CHD do not meet the recommendations for physical activity either. The aim of this review is to outline lifelong physical activity barriers faced by individuals living with CHD and provide age-appropriate strategies that can be used to ensure the development of long-term positive physical activity behaviours. Barriers to physical activity include safety fears, lack of encouragement, low exercise self-efficacy, body image concerns, limited education, socioeconomic status, reduced access to resources, and cardiac diagnosis and severity. These barriers are multifaceted and often begin in early childhood and continue to develop well into adulthood. Therefore, it is important for children to participate in physical activity from early stages of life as it has been shown to improve cardiorespiratory fitness, muscular endurance, and quality of life. Current literature demonstrates that participation in physical activity and higher intensity exercise after appropriate screening is safe and should be encouraged rather than dissuaded in people born with a congenital heart condition.

对于患有先天性心脏病(CHD)的儿童和成人来说,参加体育锻炼对于获得最佳的身体、心理和认知健康至关重要。大多数普通人群的体育锻炼不足,再加上先天性心脏病患者面临的心理、身体和社会经济障碍,许多先天性心脏病患者无法达到建议的体育锻炼要求也就不足为奇了。本综述旨在概述慢性阻塞性心脏病患者终生面临的体育锻炼障碍,并提供适合不同年龄段的策略,以确保培养长期积极的体育锻炼行为。体育锻炼的障碍包括对安全的恐惧、缺乏鼓励、运动自我效能感低、对身体形象的担忧、教育程度有限、社会经济地位、获取资源的途径减少以及心脏病的诊断和严重程度。这些障碍是多方面的,通常始于幼儿期,并一直发展到成年。因此,儿童从生命的早期阶段就参加体育锻炼是非常重要的,因为事实证明,体育锻炼可以提高心肺功能、肌肉耐力和生活质量。目前的文献表明,先天性心脏病患者在经过适当筛查后参加体育锻炼和较高强度的运动是安全的,应该鼓励而不是阻止。
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引用次数: 0
Effective Management of Cor Triatriatum Dexter Using Double Balloon Dilatation in a Paediatric Age Group Case-Report Study 使用双球囊扩张术有效治疗小儿脊柱侧弯病例报告研究
Pub Date : 2024-08-01 DOI: 10.1016/j.cjcpc.2024.06.001
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引用次数: 0
Radiation Reduction in Paediatric Cardiac Catheterization: We Can Go Even Lower 减少儿科心导管手术的辐射:我们可以做得更低
Pub Date : 2024-08-01 DOI: 10.1016/j.cjcpc.2024.05.004

Background

Radiation reduction is an integral component in the management of a paediatric cardiac catheterization laboratory. Simple and easily implementable protocol changes and technical upgrades have been shown to significantly reduce radiation exposure.

Methods

Radiation exposures (2020-2022) at Safra Children’s Hospital, Sheba Medical Center, Israel (unit A: n = 672) were retrospectively reviewed, including dose area product (DAP) (μGy m2), DAP/kg, Air Kerma (mGy), and fluoroscopy time (minutes) for 16 procedural types. Median doses were compared with those measured (2011-2014) at the Hospital for Sick Children, Toronto, Canada (unit B: n = 2033). Radiation reduction techniques included fluoroscopy acquisition at 7.5 frames/s, removal of antiscatter grids for children <30 kg, limiting field of view, use of Philips ClarityIQ technology, and an institutional culture of radiation mindedness.

Results

Exposure was significantly lower in unit A in 14 of 16 procedure types. Total median doses were lower in unit A (DAP: 91.4 [44.7-205.4] vs 387 [138.2-1339] μGy m2 [P < 0.001], DAP/kg: 9.33 [4.3-16.4] vs 29.22 [12.8-65.9] μGy m2/kg [P < 0.001], and Air Kerma: 14.9 [7.8-29] vs 61 [23-176.4] mGy [P < 0.001]) despite higher fluoroscopy time (14.1 [4.2-24.6] vs 12.3 [6.8-23.3] minutes [P = 0.03]). DAP was lower for specific procedures including pulmonary valvuloplasty (46.3 [14.3-219.3] vs 127 [60-323] μGy m2 [P < 0.001]) and patent ductus arteriosus closure (51.9 [18.8-111.8] vs 178 [96-410] μGy m2 [P < 0.001]).

Conclusions

Enhanced radiation reduction techniques can lead to lower than previously published exposure levels across a wide range of procedure types when employing dose-limiting protocols and radiation reduction technology.

背景减少辐射是儿科心导管实验室管理不可或缺的组成部分。方法回顾性审查了以色列谢巴医疗中心萨夫拉儿童医院(A单元:n = 672)的辐射暴露情况(2020-2022年),包括16种手术类型的剂量面积乘积(DAP)(μGy m2)、DAP/kg、Air Kerma(mGy)和透视时间(分钟)。中位剂量与加拿大多伦多病童医院(B单元:n = 2033)测量的剂量(2011-2014年)进行了比较。减少辐射的技术包括以7.5帧/秒的速度进行透视采集、为体重为30公斤的儿童去除防散射栅格、限制视野、使用飞利浦ClarityIQ技术以及注重辐射的机构文化。A单元的总剂量中位数较低(DAP:91.4 [44.7-205.4] vs 387 [138.2-1339] μGy m2 [P < 0.001],DAP/kg:9.33 [4.3-16.4] vs 29.22 [12.8-65.9] μGy m2/kg [P < 0.001],Air Kerma:14.9 [7.8-29] vs 61 [23-176.4] mGy [P <;0.001]),尽管透视时间更长(14.1 [4.2-24.6] vs 12.3 [6.8-23.3] 分钟 [P = 0.03])。肺动脉瓣成形术(46.3 [14.3-219.3] vs 127 [60-323] μGy m2 [P < 0.001])和动脉导管未闭(51.9 [18.8-111.8] vs 178 [96-410] μGy m2 [P < 0.001])等特定手术的 DAP 较低。结论当采用剂量限制方案和辐射减少技术时,在各种类型的手术中,辐射减少技术可使辐照水平低于之前公布的水平。
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引用次数: 0
Behaviour Concerns in Preschool Cardiac Surgery Survivors 学龄前心脏手术幸存者的行为问题
Pub Date : 2024-08-01 DOI: 10.1016/j.cjcpc.2024.04.001

Background

Behaviour concerns (BC) are reported in survivors of complex cardiac surgery (CCSx) with inconsistent evidence about health and demographic variables that impact outcomes.

Methods

A prospective inception-cohort study of infants (without known chromosomal abnormalities) after CCSx from 2001 to 2017 determined Behaviour Assessment System for Children (BASC-II/III) parent rating scales at 4.5 years. T scores ≥60 for externalizing, internalizing, and the Behavioural Symptoms Index and ≤40 for adaptive behaviour defined BC. Potential predictive variables included demographic, acute care, and health factors after initial CCSx. Multiple logistic regression using the purposeful selection method gave odds ratios (ORs) with 95% confidence intervals (CIs).

Results

Survivors (n = 585; 61% boys, 40% single ventricle) were assessed at a median age of 55 months (interquartile range: 53, 57 months). Independent predictors were noncardiac hospitalizations (OR: 1.10, 95% CI: 1.02, 1.19; P = 0.015) for externalizing; noncardiac hospitalizations (OR: 1.14, 95% CI: 1.05, 1.24; P = 0.003), female sex (OR: 1.62, 95% CI: 1.04, 2.52; P = 0.031), and single ventricle (OR: 1.82, 95% CI: 1.04, 3.17; P = 0.035) for internalizing; noncardiac hospitalizations (OR: 1.10, 95% CI: 1.02, 1.19; P = 0.017), socioeconomic status (SES) (OR: 0.98, 95% CI: 0.96, 0.10; P = 0.031), and years of maternal schooling (OR: 0.91, 95% CI: 0.84, 0.10; P = 0.04) for adaptive; and extracorporeal life-saving support (OR: 2.03, 95% CI: 1.01, 3.96; P = 0.041) for the Behavioural Symptoms Index, indicating more pervasive behaviours.

Conclusions

The number of noncardiac hospitalizations predicted increased odds of BC and requires further attention. Improving inpatient trauma-informed care experiences and optimizing access to primary care to prevent noncardiac hospitalization may be modifiable.

背景据报道,复杂心脏手术(CCSx)幸存者存在行为问题(BC),但有关影响结果的健康和人口统计学变量的证据并不一致。方法对2001年至2017年期间接受CCSx手术的婴儿(无已知染色体异常)进行前瞻性初始队列研究,确定4.5岁时的儿童行为评估系统(BASC-II/III)家长评分量表。外化、内化和行为症状指数的T评分≥60分,适应行为的T评分≤40分即为BC。潜在的预测变量包括初始 CCSx 后的人口统计学、急性护理和健康因素。结果幸存者(n = 585;61% 男孩,40% 单心室)接受评估时的中位年龄为 55 个月(四分位间范围:53 至 57 个月)。独立预测因素包括:非心脏病住院治疗(OR:1.10,95% CI:1.02,1.19;P = 0.015);非心脏病住院治疗(OR:1.14,95% CI:1.05,1.24;P = 0.003);女性(OR:1.62,95% CI:1.04,2.52;P = 0.031)、单心室(OR:1.82,95% CI:1.04,3.17;P = 0.035)为内化;非心脏病住院(OR:1.10,95% CI:1.02,1.19;P = 0.017)、社会经济地位(SES)(OR:0.98,95% CI:0.96,0.10;P = 0.031)和产妇受教育年限(OR:0.91,95% CI:0.84,0.10;P = 0.04)的适应性;以及体外救生支持(OR:2.03,95% CI:1.01,3.96;P = 0.结论非心脏病住院次数预示着BC几率的增加,需要进一步关注。改善住院病人的创伤知情护理经验和优化初级保健服务以预防非心脏病住院可能是可行的。
{"title":"Behaviour Concerns in Preschool Cardiac Surgery Survivors","authors":"","doi":"10.1016/j.cjcpc.2024.04.001","DOIUrl":"10.1016/j.cjcpc.2024.04.001","url":null,"abstract":"<div><h3>Background</h3><p>Behaviour concerns (BC) are reported in survivors of complex cardiac surgery (CCSx) with inconsistent evidence about health and demographic variables that impact outcomes.</p></div><div><h3>Methods</h3><p>A prospective inception-cohort study of infants (without known chromosomal abnormalities) after CCSx from 2001 to 2017 determined Behaviour Assessment System for Children (BASC-II/III) parent rating scales at 4.5 years. <em>T</em> scores ≥60 for externalizing, internalizing, and the Behavioural Symptoms Index and ≤40 for adaptive behaviour defined BC. Potential predictive variables included demographic, acute care, and health factors after initial CCSx. Multiple logistic regression using the purposeful selection method gave odds ratios (ORs) with 95% confidence intervals (CIs).</p></div><div><h3>Results</h3><p>Survivors (n = 585; 61% boys, 40% single ventricle) were assessed at a median age of 55 months (interquartile range: 53, 57 months). Independent predictors were noncardiac hospitalizations (OR: 1.10, 95% CI: 1.02, 1.19; <em>P</em> = 0.015) for externalizing; noncardiac hospitalizations (OR: 1.14, 95% CI: 1.05, 1.24; <em>P</em> = 0.003), female sex (OR: 1.62, 95% CI: 1.04, 2.52; <em>P</em> = 0.031), and single ventricle (OR: 1.82, 95% CI: 1.04, 3.17; <em>P</em> = 0.035) for internalizing; noncardiac hospitalizations (OR: 1.10, 95% CI: 1.02, 1.19; <em>P</em> = 0.017), socioeconomic status (SES) (OR: 0.98, 95% CI: 0.96, 0.10; <em>P</em> = 0.031), and years of maternal schooling (OR: 0.91, 95% CI: 0.84, 0.10; <em>P</em> = 0.04) for adaptive; and extracorporeal life-saving support (OR: 2.03, 95% CI: 1.01, 3.96; <em>P</em> = 0.041) for the Behavioural Symptoms Index, indicating more pervasive behaviours.</p></div><div><h3>Conclusions</h3><p>The number of noncardiac hospitalizations predicted increased odds of BC and requires further attention. Improving inpatient trauma-informed care experiences and optimizing access to primary care to prevent noncardiac hospitalization may be modifiable.</p></div>","PeriodicalId":100249,"journal":{"name":"CJC Pediatric and Congenital Heart Disease","volume":null,"pages":null},"PeriodicalIF":0.0,"publicationDate":"2024-08-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.sciencedirect.com/science/article/pii/S2772812924000381/pdfft?md5=0b3e1115d1c09283c8fecaa3dfd03aa8&pid=1-s2.0-S2772812924000381-main.pdf","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142076709","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
引用次数: 0
Assessing Cardiovascular Health in Pediatric Hypertrophic Cardiomyopathy using the CANHEART Health Index 使用 CANHEART 健康指数评估小儿肥厚型心肌病患者的心血管健康状况
Pub Date : 2024-07-01 DOI: 10.1016/j.cjcpc.2024.06.002
Victoria Srbely, A. Jeewa, T. Pidborochynski, S. Lemaire-Paquette, Michael Khoury, Chentel Cunningham, Santokh Dhillon, N. Laroussi, L. Vaujois, Frédéric Dallaire, D. Schantz, K. Armstrong, W. Mawad, Timothy J Bradley, Jennifer Conway
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引用次数: 0
Childhood Maltreatment and Body Mass Index in Older Adults With Chronic Illness 患有慢性病的老年人的童年虐待与体重指数
Pub Date : 2024-06-01 DOI: 10.1016/j.cjcpc.2024.03.002
Vicki St-Arnaud MSc , Ann Xiuli Chicoine BSc , Jean-Claude Tardif MD , David Busseuil PhD , Bianca D’Antono PhD

Background

Childhood trauma has been associated with greater psychological and physical morbidity, including a greater risk of developing coronary artery disease (CAD). Emotional dysregulation and increased body mass index (BMI) may be involved. This study evaluated whether (1) childhood maltreatment is associated with a higher BMI at study onset and with greater increases in BMI 5 years later among older adults with CAD or other chronic illnesses; (2) sex and/or CAD status moderate these results; and (3) baseline symptoms of anxiety, depression, and perceived stress (emotional dysregulation) mediate the association between childhood maltreatment and BMI at follow-up.

Methods

A total of 1232 men and women (aged 60.86 [6.95] years) completed validated questionnaires on childhood maltreatment and symptoms of psychological distress. The weight and height of the participant were measured, and the BMI was calculated using the weight (kg)/height (m2) ratio.

Results

Childhood maltreatment was not significantly associated with BMI at study onset nor at follow-up. This relation did not differ as a function of sex nor CAD status. Although childhood maltreatment was associated with significantly greater psychological distress at study onset (all P < 0.001), there latter was not found to mediate the relation between maltreatment and change in BMI at follow-up.

Conclusions

In contrast to previous literature, childhood maltreatment was not associated with BMI nor with the change in BMI over 5 years in men and women with chronic disease. However, as psychological distress increases risk for morbidity and mortality, it may represent an important target for prevention and intervention in survivors of childhood maltreatment.

背景童年创伤与更高的心理和生理发病率有关,包括更高的冠状动脉疾病(CAD)发病风险。情绪失调和体重指数(BMI)升高可能与此有关。本研究评估了:(1) 在患有冠状动脉疾病或其他慢性疾病的老年人中,童年虐待是否与研究开始时较高的体重指数以及 5 年后体重指数的增加有关;(2) 性别和/或冠状动脉疾病状况是否会缓和这些结果;(3) 焦虑、抑郁和感知压力(情绪失调)等基线症状是否会介导童年虐待与随访时体重指数之间的关系。方法 共有 1232 名男性和女性(年龄为 60.86 [6.95] 岁)填写了有关童年虐待和心理困扰症状的有效问卷。测量了受试者的体重和身高,并使用体重(公斤)/身高(平方米)比值计算了体重指数。这种关系与性别和 CAD 状态没有关系。结论与以往的文献不同,在患有慢性疾病的男性和女性中,童年虐待与 BMI 无关,也与 5 年内 BMI 的变化无关。然而,由于心理困扰会增加发病率和死亡率的风险,因此它可能是预防和干预儿童虐待幸存者的一个重要目标。
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引用次数: 0
期刊
CJC Pediatric and Congenital Heart Disease
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