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Are we at risk of commodifying lived experience in childhood disability research? 在儿童残疾研究中,我们是否面临着生活经验商品化的风险?
IF 1.3 4区 医学 Q3 NURSING Pub Date : 2024-06-01 Epub Date: 2024-05-05 DOI: 10.1177/13674935241253919
Jim Reeder
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引用次数: 0
An Australian survey of health professionals' perceptions of use and usefulness of electronic medical records in hospitalised children's pain care. 澳大利亚关于医疗专业人员对住院儿童疼痛护理中电子病历的使用和实用性的看法调查。
IF 1.9 4区 医学 Q3 NURSING Pub Date : 2024-05-29 DOI: 10.1177/13674935241256254
Nicole Pope, Janelle Keyser, Dianne Crellin, Greta Palmer, Mike South, Denise Harrison

Pain in hospitalised children is common, yet inadequately treated. Electronic medical records (EMRs) can improve care quality and outcomes during hospitalisation. Little is known about how clinicians use EMRs in caring for children with pain. This national cross-sectional survey examined the perceptions of clinician-EMR users about current and potential use of EMRs in children's pain care. One hundred and ninety-four clinicians responded (n = 81, 74% nurses; n = 21, 19% doctors; n = 7, 6% other); most used Epic (n = 53/109, 49%) or Cerner (n = 42/109, 38%). Most (n = 84/113, 74%) agreed EMRs supported their initiation of pharmacological pain interventions. Fewer agreed EMRs supported initiation of physical (n = 49/113, 43%) or psychological interventions (n = 41/111, 37%). Forty-four percent reported their EMR had prompt reminders for pain care. Prompts were perceived as useful (n = 40/51, 78%). Most agreed EMRs supported pain care provision (n = 94/110, 85%) and documentation (n = 99/111, 89%). Only 39% (n = 40/102) agreed EMRs improved pain treatment, and 31% (n = 32/103) agreed EMRs improved how they involve children and families in pain care. Findings provide recommendations for EMR designs that support clinicians' understanding of the multidimensionality of children's pain and drive comprehensive assessments and treatments. This contribution will inform future translational research on harnessing technology to support child and family partnerships in care.

住院儿童疼痛很常见,但治疗效果不佳。电子病历(EMR)可以提高住院期间的护理质量和效果。关于临床医生在护理疼痛儿童时如何使用 EMR,人们知之甚少。这项全国性横断面调查研究了临床医生-EMR 用户对当前和潜在使用 EMR 治疗儿童疼痛的看法。有 194 名临床医生做出了回应(n = 81,74% 为护士;n = 21,19% 为医生;n = 7,6% 为其他);大多数人使用 Epic(n = 53/109,49%)或 Cerner(n = 42/109,38%)。大多数人(n = 84/113,74%)同意 EMR 支持他们启动药物疼痛干预。较少的人同意 EMR 支持启动物理(n = 49/113,43%)或心理干预(n = 41/111,37%)。44%的人称他们的电子病历具有疼痛护理提示功能。提示被认为是有用的(n = 40/51,78%)。大多数人同意 EMR 支持疼痛护理的提供(n = 94/110,85%)和记录(n = 99/111,89%)。只有39%(n=40/102)的人认为电子病历改善了疼痛治疗,31%(n=32/103)的人认为电子病历改善了他们让儿童和家庭参与疼痛护理的方式。研究结果为支持临床医生理解儿童疼痛的多维性并推动全面评估和治疗的电子病历设计提供了建议。这项研究成果将为未来利用科技支持儿童和家庭合作护理的转化研究提供参考。
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引用次数: 0
'I don't want him to always be so far behind': Parental perceptions of child independence in the context of extreme prematurity; a qualitative study. 我不想让他总是落后那么多":父母对极度早产儿独立性的看法;一项定性研究。
IF 1.3 4区 医学 Q3 NURSING Pub Date : 2024-05-27 DOI: 10.1177/13674935241256545
Emmi Suonpera, Katie Gallagher, Neil Marlow, Anne Lanceley

This study addresses the paucity of research on parents of extremely preterm adolescents (born <27 weeks of gestation) and their experiences within the framework of parental determinism. We conducted semi-structured interviews with twenty-two mothers and one father. Data were analysed thematically, revealing three overarching themes and eight subthemes shaping parental accounts. These themes centred on parental ambitions for their children, their perceptions of their child's abilities, and the parenting behaviours employed to support parental aspirations. Parents' actions were influenced by their ambitions and the belief that they could impact their child's future independence. While some parents adopted 'trusting', non-intensive parenting behaviours, those anticipating challenges for their child's future independence resorted to intensive parenting practices. These findings align with the concept of parental determinism, emphasising the perceived causal link between present parental actions and future child outcomes. In the context of extreme prematurity, a nuanced understanding of parental perceptions regarding their child's future independence aligned with a delicate balance between hope and realistic aspiration is crucial for enhancing parental support and well-being.

本研究针对极早产青少年(生于
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引用次数: 0
Hospitalized children experience: Play heroes to build bridges between hospital days and everyday life. 住院儿童的经历:扮演英雄,在住院日和日常生活之间架起桥梁。
IF 1.9 4区 医学 Q3 NURSING Pub Date : 2024-05-09 DOI: 10.1177/13674935241253303
Sunniva Olsen, Malene Beck, Malene Boas, Anita Pedersen, Jannie Nissen, Charlotte Simonÿ

Play has positive effects on children's well-being and development. Play heroes, in Danish, called "Legeheltene", have worked, for the last 7 years, to improve play and movement for hospitalized children in Danish hospitals. However, the significance of this novel Danish intervention is insufficiently researched. This phenomenological-hermeneutic study explored how children experience interacting with a play hero when hospitalized at a Danish paediatric unit. Combined observations and interviews were performed with children from two paediatric departments. Data were analyzed with inspiration from the French philosopher Paul Ricoeur. Three themes were identified: "A sense of familiarity," "From loneliness to connectedness," and "Becoming more powerful." Children experience that interaction with play heroes is existentially meaningful. Through playful activities, children experience that they are connected to their daily lives outside the hospital and their true selves. Bridges to children's everyday lives are built, leading to an improved sense of freedom, security, and the ability to manage difficult aspects of their hospital stay. Engagement with play heroes provides children with an experience of well-being and can be a positive direction in care provided to hospitalized children.

游戏对儿童的健康和发展有着积极的影响。在过去的 7 年里,被丹麦人称为 "Legeheltene "的游戏英雄们一直致力于改善丹麦医院中住院儿童的游戏和运动状况。然而,丹麦对这一新颖干预措施的意义研究不足。这项现象学-心理学研究探讨了在丹麦儿科住院的儿童是如何体验与游戏英雄互动的。研究人员对两个儿科部门的儿童进行了综合观察和访谈。研究人员从法国哲学家保罗-里科尔(Paul Ricoeur)那里获得灵感,对数据进行了分析。确定了三个主题:"熟悉感"、"从孤独到联系 "和 "变得更有力量"。儿童体验到与游戏英雄的互动是有存在意义的。通过游戏活动,儿童体验到他们与医院外的日常生活和真实自我之间的联系。与儿童日常生活的桥梁得以建立,从而提高了他们的自由感、安全感以及处理住院期间困难问题的能力。参与游戏英雄活动能让儿童体验到幸福感,是为住院儿童提供护理的一个积极方向。
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引用次数: 0
Caregivers with limited English proficiency: Satisfaction with primary pediatric healthcare. 英语水平有限的护理人员:对初级儿科医疗服务的满意度。
IF 1.9 4区 医学 Q3 NURSING Pub Date : 2024-05-08 DOI: 10.1177/13674935241252479
Linda Thanh Duong, My-An Tran

With a growing 25.5 million people in the United States experiencing limited-English proficiency (LEP), there is a concern over these individuals' experiences in healthcare. Health outcomes of LEP status are well-documented for adults in hospitals; however, less is known about patient experience, pediatric populations, and primary care settings. This study investigated differences in caregiver satisfaction between families with and without LEP receiving healthcare for their child. A sample of 25,118 caregivers whose children from birth to 17 years had met with any healthcare providers in the past year was used. Analyses consisted of unpaired t-tests comparing mean satisfaction of LEP and English-proficient (EP) caregivers in the domains of how often primary healthcare providers spent enough time with the child, listened, provided specific information, demonstrated sensitivity to the family's values, and made the respondent feel like a partner. In all aspects of caregiver satisfaction, mean satisfaction scores were significantly lower for LEP caregivers than EP caregivers. The largest drops were seen in perceived time and sensitivity. These results highlight a need to ensure LEP families receive equitable and high-quality primary care services, ultimately building trust in the healthcare system and improving children's health and well-being.

在美国,英语水平有限(LEP)的人数正在不断增加,达到 2550 万,因此这些人在医疗保健方面的经历备受关注。LEP 状态对成人在医院的健康结果有充分的记录,但对患者体验、儿科人群和初级保健环境的了解较少。本研究调查了有 LEP 和没有 LEP 的家庭在为其子女接受医疗保健服务时护理人员满意度的差异。研究使用了 25118 个护理人员样本,这些护理人员的子女从出生到 17 岁,在过去一年中与任何医疗服务提供者见过面。分析包括非配对 t 检验,比较 LEP 和英语熟练(EP)照顾者在以下方面的平均满意度:初级医疗保健提供者是否经常花足够的时间陪伴孩子、倾听孩子的意见、提供具体的信息、对家庭的价值观表现出敏感性,以及让受访者感觉自己是孩子的伙伴。在照顾者满意度的所有方面,LEP 照顾者的平均满意度得分都明显低于 EP 照顾者。下降幅度最大的是感知时间和敏感度。这些结果突出表明,有必要确保 LEP 家庭获得公平和高质量的初级保健服务,最终建立对医疗保健系统的信任,改善儿童的健康和福祉。
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引用次数: 0
Factors associated with healthcare transition readiness for adolescents with chronic conditions: A cross-sectional study 与患有慢性病的青少年医疗保健过渡准备相关的因素:横断面研究
IF 1.9 4区 医学 Q3 NURSING Pub Date : 2024-04-26 DOI: 10.1177/13674935241248859
Hye Seung Hong, YeoJin Im
Healthcare transition readiness (HCTR) plays a vital role by fostering autonomy, self-management skills, and active involvement in healthcare, leading to positive health outcomes. This study aimed to examine the factors associated with HCTR in adolescents with chronic conditions (ACCs) including adolescents’ autonomy, parental overprotection, and autonomy support from healthcare providers (HCPs). This descriptive study included 107 adolescents aged 14–19 years (median age: 17 years, IQR = 1), recruited from online communities and support groups in South Korea. Data were analyzed using hierarchical linear regression. Our research has shown that HCTR is linked to a lower level of parental overprotection (β = −0.46, 95% CI [−0.59, −0.33]) and higher levels of autonomy support from HCPs (β = 0.46, 95% CI [0.36, 0.56]). Among general characteristics, we also found that having a transfer plan to adult care (β = 0.24, 95% CI [0.04, 0.44]) is significantly associated with HCTR. This study contributes to a broader understanding of HCTR by examining its associated factors in ACC. The results emphasize the pivotal roles of parental involvement, healthcare provider support, and structured transition to adult care in enhancing HCTR. These findings underscore the need for comprehensive assistance to ensure successful healthcare transitions.
医疗保健过渡准备(HCTR)在促进自主性、自我管理技能和积极参与医疗保健方面发挥着至关重要的作用,从而带来积极的健康结果。本研究旨在探讨与慢性病青少年(ACCs)医疗保健过渡准备相关的因素,包括青少年的自主性、父母的过度保护以及医疗保健提供者(HCPs)对青少年自主性的支持。这项描述性研究纳入了 107 名 14-19 岁的青少年(中位年龄:17 岁,IQR = 1),他们是从韩国的在线社区和支持团体中招募的。数据采用分层线性回归法进行分析。我们的研究表明,HCTR 与较低水平的父母过度保护(β = -0.46,95% CI [-0.59,-0.33])和较高水平的 HCP 自主支持(β = 0.46,95% CI [0.36,0.56])有关。在一般特征中,我们还发现拥有转入成人护理计划(β = 0.24,95% CI [0.04,0.44])与 HCTR 显著相关。本研究通过考察 ACC 中的相关因素,加深了对 HCTR 的理解。研究结果强调了父母的参与、医疗保健提供者的支持以及向成人护理的有序过渡在提高 HCTR 方面的关键作用。这些研究结果突出表明,有必要提供全面的帮助,以确保成功的医疗保健过渡。
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引用次数: 0
Adolescents’ perspectives and experiences of accessing general practitioner services: A systematic review 青少年对全科医生服务的看法和体验:系统回顾
IF 1.9 4区 医学 Q3 NURSING Pub Date : 2024-04-17 DOI: 10.1177/13674935241239837
Stephanie M Lawrence, Mohamad M Saab, Eileen Savage, Josephine Hegarty, Serena FitzGerald
Adolescents face issues regarding physical health, mental health, sexual health, drug and alcohol problems, stress, and peer pressure. Little is known about adolescents’ help-seeking behaviours in relation to health concerns. The general practitioner (GP) is usually the first point of contact for adolescents. The aim of this systematic review was to identify, describe, and summarize evidence on barriers and enablers experienced by adolescents when accessing GP-led primary care services. Systematic searches using four electronic databases (PsycINFO, MEDLINE, CINAHL, and SocINDEX) were conducted and the quality of the included studies was appraised. Six studies were included in this review. Findings indicate that barriers to GP access relate to trust, confidentiality, privacy, and communication. Adolescents also reported barriers such as transport, cost, and lack of information. Adolescents reported enablers being services that are sensitive to their needs, healthcare professionals who understand them, and services that are flexible regarding out of hours access. Listening to and acting on the voice of adolescents is important to developing youth-friendly services.
青少年面临着身体健康、心理健康、性健康、毒品和酒精问题、压力以及同伴压力等问题。人们对青少年就健康问题寻求帮助的行为知之甚少。全科医生(GP)通常是青少年的第一联系人。本系统性综述旨在识别、描述和总结有关青少年在获得全科医生主导的初级医疗服务时遇到的障碍和有利因素的证据。我们使用四个电子数据库(PsycINFO、MEDLINE、CINAHL 和 SocINDEX)进行了系统性检索,并对纳入研究的质量进行了评估。本综述共纳入六项研究。研究结果表明,全科医生就诊的障碍与信任、保密、隐私和沟通有关。青少年还报告了交通、费用和缺乏信息等障碍。青少年报告的有利因素包括对他们的需求有敏感认识的服务、理解他们的医疗保健专业人员,以及在非工作时间提供的灵活服务。倾听青少年的心声并根据他们的心声采取行动,对于发展青少年友好型服务非常重要。
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引用次数: 0
‘They don’t know what to do with our children’: Experiences and views on feeding and swallowing from parents of children who use long-term ventilation 他们不知道该拿我们的孩子怎么办":使用长期通气的儿童的父母对喂养和吞咽的经验和看法
IF 1.9 4区 医学 Q3 NURSING Pub Date : 2024-04-09 DOI: 10.1177/13674935241242824
Sabrena Lee, Jeanne Marshall, Michael Clarke, Christina Smith
Increasing use of paediatric long-term ventilation (LTV) has been reported around the world over the last two decades and it is anticipated that use of this medical intervention will continue to grow. Research has shown that children who use LTV have risk factors for feeding and swallowing difficulties which result in long-term reliance on non-oral feeding methods. This Patient and Public Involvement (PPI) activity explored experiences of parents of children with LTV on their children’s feeding and swallowing journeys. Individual and group interviews with seven parents were conducted. Interview data was then analysed using content analysis. Families discussed a range of themes including impacts on their family, facilitators and barriers to feeding and swallowing journeys, speech and language therapy (SLT) support, their family’s healthcare journey in relation to quality of life and future directions for research. This study highlighted potential key areas to explore when identifying ways to improve SLT care and research in feeding and swallowing for children who use LTV.
据报道,在过去二十年里,世界各地越来越多地使用儿科长期通气(LTV),预计这种医疗干预措施的使用将继续增长。研究表明,使用长期通气的儿童存在喂养和吞咽困难的风险因素,从而导致长期依赖非口喂养方式。这项 "患者与公众参与"(Patient and Public Involvement,PPI)活动探究了使用 "LTV "喂养法的儿童家长在其子女喂养和吞咽过程中的经历。我们对七位家长进行了个人和小组访谈。然后使用内容分析法对访谈数据进行了分析。家长们讨论了一系列主题,包括对家庭的影响、喂养和吞咽过程中的促进因素和障碍、言语和语言治疗(SLT)支持、与生活质量相关的家庭医疗历程以及未来的研究方向。这项研究强调了在确定如何改善言语和语言治疗师的护理以及对使用LTV的儿童进行喂养和吞咽方面的研究时,需要探索的潜在关键领域。
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引用次数: 0
Parents’ experiences of their child’s best interests during a hospital stay in Australia 澳大利亚住院期间父母对子女最大利益的体验
IF 1.9 4区 医学 Q3 NURSING Pub Date : 2024-04-03 DOI: 10.1177/13674935241243101
Angela Afua Quaye, Mandie Foster, Lisa Whitehead, Inger Kristensson Hallström
Determining the child’s best interests in a hospital setting will ideally involve the combined views of children, parents, and healthcare professionals. However, few studies have explored parents’ experiences of their child’s best interests when they engage with the healthcare system. Therefore, this study aimed to explore parents’ experiences of their child’s best interests during hospitalisation. A descriptive qualitative inductive design using face-to-face parent–child combined interviews, analysed by latent content analysis, was used. Sixteen parents recruited from a tertiary hospital in Western Australia were interviewed. Collaboration, development of trustworthy relationships, and effective communication were essential in shaping parents’ experiences of their child’s best interests during hospitalisation.
在医院环境中确定儿童的最大利益时,最好能综合儿童、家长和医疗保健专业人员的意见。然而,很少有研究探讨父母在与医疗系统接触时对其子女最大利益的体验。因此,本研究旨在探讨住院期间家长对其子女最大利益的体验。本研究采用描述性定性归纳设计,使用面对面亲子综合访谈法,并通过潜在内容分析法进行分析。从西澳大利亚州一家三甲医院招募的 16 名家长接受了访谈。合作、发展值得信赖的关系以及有效的沟通对于塑造家长在住院期间对孩子最佳利益的体验至关重要。
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引用次数: 0
Effect of vibratory device on the time of administration of vaccines and on patient satisfaction measures. 振动装置对疫苗接种时间和患者满意度的影响。
IF 1.9 4区 医学 Q3 NURSING Pub Date : 2024-03-31 DOI: 10.1177/13674935241242156
Amanda Thompson, Minna Leydorf Rodrigo, Alia Roberts, Jaylyn Waddell, Rebecca Carter

Previous studies have demonstrated that Buzzy® is effective for pain reduction during vaccination. This study aimed to determine if Buzzy® would have an effect on either duration of vaccine administration and/or patient satisfaction. Pediatric patients aged birth to 18 years old receiving a vaccination were randomized to either a control group receiving no intervention, or the experimental group, utilizing Buzzy®. Time of administration was measured by the number of seconds required by nursing to administer vaccines. Patient satisfaction was measured with a survey given to guardians. Time required was reduced by almost 2 min when utilizing Buzzy®, with median time dropping to 190, 95% CI [26.99, 415.92] seconds from 333, 95% CI [51.35, 627.21] seconds. Patient satisfaction surveys showed positive impacts of using the device, with 100% that used the device reporting that it "made a difference in the pain level experienced," but did not demonstrate statistical significance. This study shows that use of Buzzy® increases efficiency of appointments with possible positive effect on patient satisfaction.

以往的研究表明,Buzzy® 能有效减轻疫苗接种过程中的疼痛。本研究旨在确定 Buzzy® 是否会对疫苗接种持续时间和/或患者满意度产生影响。年龄从出生到 18 岁、接受疫苗接种的小儿患者被随机分配到未接受干预的对照组或使用 Buzzy® 的实验组。接种时间以护理人员接种疫苗所需的秒数来衡量。病人满意度则通过向监护人发放调查问卷来衡量。使用 Buzzy® 所需的时间减少了近 2 分钟,中位时间从 333 秒(95% CI [51.35, 627.21])降至 190 秒(95% CI [26.99, 415.92])。患者满意度调查显示了使用该装置的积极影响,100% 的患者表示 "疼痛程度有所改善",但未显示统计学意义。这项研究表明,使用 Buzzy® 可以提高预约效率,并可能对患者满意度产生积极影响。
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引用次数: 0
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Journal of Child Health Care
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