Child Care Health and Development最新文献_第10页

Family perspectives on provider conversations about housing needs for children with medical complexity 从家庭角度看医疗服务提供者就病情复杂儿童的住房需求进行的谈话。

IF 1.9 4区医学 Q2 PEDIATRICS

Child Care Health and Development

Pub Date : 2024-03-26 DOI: 10.1111/cch.13253

Brandon M. Smith, Pamela K. Donohue, Rebecca R. Seltzer

Background

Children with medical complexity (CMC) have unique, and often unmet, housing needs that place them at risk for housing insecurity and poor health outcomes. Yet, little is known about how families with CMC discuss their housing needs with healthcare providers. We sought to understand: (1) how housing is currently discussed between CMC caregivers and healthcare providers, and (2) how CMC caregivers want such conversations to occur.

Methods

From August to November 2020, we conducted semi-structured interviews with parents/guardians of CMC (<26 years old) in Maryland as part of a larger study to understand their housing experience. Four questions on communication with providers about housing were developed a priori and included in this analysis. Qualitative content analysis was applied to interview transcripts.

Results

Among 31 completed interviews, most participants were female (90%), lived in single-family homes (68%) and were from a mix of neighbourhood types (urban 19%, suburban 58%, rural 22%). Their children ranged in age from 6 months to 22 years, had a mix of insurance types (public 65%, private 29%, both 6%) and nearly all required medical equipment or technology. Four themes emerged: (1) Current housing conversations are rare and superficial, (2) Ideal housing conversations would result in thoughtful care plans and concrete supports, (3) Frequency and initiation of housing conversations are best tailored to family preferences and (4) Value of housing conversations are limited by lack of provider knowledge and time.

Conclusions

Conversations about housing needs for CMC happen in limited ways with healthcare providers, despite a desire on the part of their caregivers. Such conversations can give meaningful insights into the family's specific housing challenges, allowing providers to appropriately tailor care plans and referrals. Future work is needed to capture provider perspectives, design CMC-specific housing screeners and develop interdisciplinary referral strategies.

背景：有复杂病症（CMC）的儿童有独特的住房需求，而且往往得不到满足，这使他们面临住房无保障和健康状况不良的风险。然而，人们对有复杂病症儿童的家庭如何与医疗服务提供者讨论他们的住房需求知之甚少。我们试图了解：（1）目前 CMC 护理者与医疗服务提供者之间是如何讨论住房问题的；（2）CMC 护理者希望如何进行此类对话：从 2020 年 8 月到 11 月，我们对 CMC 的父母/监护人进行了半结构化访谈（结果：在 31 个完成的访谈中，大多数参与者都是女性：在 31 个完成的访谈中，大多数参与者为女性（90%），居住在单户住宅中（68%），来自不同类型的社区（城市 19%、郊区 58%、农村 22%）。他们的孩子年龄从 6 个月到 22 岁不等，保险类型各异（公共保险 65%，私人保险 29%，两者都有 6%），几乎所有孩子都需要医疗设备或技术。我们发现了四个主题：（1）目前的住房问题对话很少且肤浅；（2）理想的住房问题对话将产生周到的护理计划和具体的支持；（3）住房问题对话的频率和启动最好根据家庭的偏好进行调整；（4）住房问题对话的价值因缺乏医疗服务提供者的知识和时间而受到限制：结论：尽管 CMC 的照护者希望与医疗服务提供者就 CMC 的住房需求进行对话，但对话的方式很有限。这种对话可以让医疗服务提供者深入了解家庭在住房方面所面临的具体挑战，从而为他们量身定制适当的护理计划和转介方案。今后的工作需要捕捉医疗服务提供者的观点，设计针对 CMC 的住房筛选器，并制定跨学科转介策略。

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引用次数: 0

Increased risk of complications in lower versus upper limb peripheral intravenous cannulation in children with severe neurological impairment 严重神经损伤儿童下肢外周静脉插管与上肢外周静脉插管相比，并发症风险更高。

IF 1.9 4区医学 Q2 PEDIATRICS

Child Care Health and Development

Pub Date : 2024-03-26 DOI: 10.1111/cch.13250

Eliza Kluckow, Sajini Perera, Isaac Clifford, Daniel Wilks, Monica S. Cooper

Background

Obtaining peripheral intravenous catheter (PIVC) access in children with severe neurological impairment (SNI) is often challenging and commonly associated with complications, including dislodgement, phlebitis and extravasation. In severe cases, extravasation injury may lead to tissue necrosis, ulceration and long-term morbidity. The aim of this study was to determine the relative incidence of PIVC complications secondary to lower limb cannulation, compared to upper limb, in children with SNI.

Methods

A single centre, retrospective, observational review was conducted. Patients with SNI, admitted at a tertiary paediatric centre over 6 months between July and December 2022, were included.

Results

One-hundred fifty-five PIVC procedures were conducted in 110 children over the study period. Complications were more common in lower limb PIVCs (12/16, 75%) compared to upper limb (58/139, 42%), p = 0.01.

Conclusion

Upper limb cannulation is preferred in children with SNI.

背景：为患有严重神经功能障碍（SNI）的儿童获取外周静脉导管（PIVC）通路通常具有挑战性，而且通常会出现脱落、静脉炎和外渗等并发症。在严重病例中，外渗损伤可能导致组织坏死、溃疡和长期发病。本研究的目的是确定下肢插管与上肢插管相比，SNI 患儿 PIVC 并发症的相对发生率：方法：进行了一项单中心、回顾性、观察性审查。研究对象包括 2022 年 7 月至 12 月间在一家三级儿科中心住院的 SNI 患者，时间跨度为 6 个月：结果：在研究期间，为110名儿童实施了155例PIVC手术。与上肢（58/139，42%）相比，下肢PIVC（12/16，75%）的并发症更常见，P = 0.01：结论：SNI患儿首选上肢插管。

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引用次数: 0

A systematic review of the efficacy of group social skills interventions on social functioning and social participation in children with acquired brain injury or cerebral palsy 小组社交技能干预对后天性脑损伤或大脑性麻痹儿童的社会功能和社会参与效果的系统性回顾。

IF 1.9 4区医学 Q2 PEDIATRICS

Child Care Health and Development

Pub Date : 2024-03-25 DOI: 10.1111/cch.13242

Bianca A. D. Thompson, Rose Gilmore, Jacqui Barfoot, Leanne Sakzewski

Aim

The aim of this study was to evaluate the efficacy of Group social skills interventions (GSSIs) versus any comparator on social functioning in children aged 5–12 years with acquired brain injury or cerebral palsy.

Background

GSSIs are an evidence-based approach to foster social skills development in children with autism spectrum disorder. Currently, limited literature exploring GSSIs in children with acquired brain injury and cerebral palsy is available.

Results

MEDLINE, SCOPUS, Embase, CINAHL, Cochrane Library, PsycINFO, clinicaltrials.gov, ICTRP and ProQuest Dissertations and Theses were systematically searched. Study screening, risk-of-bias, Grading of Recommendations Assessment, Development and Evaluation and data extraction were performed in duplicate. Six studies were included in the narrative synthesis (one randomised controlled trial and five nonrandomised studies). Results indicate that GSSIs may increase children's social skills as measured on the Social Skills Rating System and Social Skills Questionnaire. Very low certainty evidence was found for improvements in social functioning and competence.

Conclusions

There is low certainty evidence that participation in GSSI may lead to gains in social functioning for children with acquired brain injury or cerebral palsy. Given the certainty of the evidence, these results must be interpreted with caution. Only one randomised controlled trial of GSSIs for children with acquired brain injury was identified, underscoring the need for additional high-quality studies.

目的：本研究旨在评估团体社交技能干预（GSSIs）与任何参照物相比，对5-12岁后天性脑损伤或脑瘫儿童社交功能的疗效：背景：小组社交技能干预是一种以证据为基础的方法，可促进自闭症谱系障碍儿童的社交技能发展。目前，针对后天性脑损伤和脑瘫儿童的 GSSIs 探索文献有限：对 MEDLINE、SCOPUS、Embase、CINAHL、Cochrane Library、PsycINFO、clinicaltrials.gov、ICTRP 和 ProQuest Dissertations and Theses 进行了系统检索。研究筛选、偏倚风险、建议分级评估、开发和评价以及数据提取均一式两份。六项研究被纳入叙述性综述（一项随机对照试验和五项非随机研究）。结果表明，根据社交技能评级系统和社交技能问卷的测量结果，GSSIs 可以提高儿童的社交技能。结论：有低度确定性证据表明，参加 GSSI 可提高后天性脑损伤或脑瘫儿童的社交功能。鉴于证据的不确定性，必须谨慎解释这些结果。目前只发现了一项针对后天性脑损伤儿童的 GSSI 随机对照试验，这表明需要进行更多高质量的研究。

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引用次数: 0

How can we reach long-lasting inclusive participation for all? A vision for the future 我们如何才能实现所有人的长期包容性参与？未来愿景。

IF 1.9 4区医学 Q2 PEDIATRICS

Child Care Health and Development

Pub Date : 2024-03-24 DOI: 10.1111/cch.13249

Anna Ullenhag, Christine Imms, Dana Anaby, Jessica M. Kramer, Sonya Girdler, Jan Willem Gorter, Marjolijn Ketelaar, Reidun Birgitta Jahnsen, Catherine Elliott, Mats Granlund

In 2022, an international conference was held focusing on ‘participation’. We shared current evidence, identified knowledge gaps and worked together to understand what new knowledge and community and practice changes were needed. This brief communication is a summary of the conference delegates' discussions. We present the key assumptions we make about participation and propose what is needed to create change for societies, communities, families and individuals. While we have some robust evidence to support participation approaches, more is needed, and it is everyone's responsibility to build an inclusive society where participation for all is the reality.

2022 年，召开了一次以 "参与 "为主题的国际会议。我们分享了当前的证据，找出了知识差距，并共同了解需要哪些新知识、社区和实践变革。本简讯是会议代表的讨论摘要。我们提出了关于参与的关键假设，并提出了为社会、社区、家庭和个人创造变革所需的条件。虽然我们有一些有力的证据来支持参与方法，但还需要更多的证据，而建设一个人人参与的包容性社会是每个人的责任。

引用次数: 0

Physical health conditions in young children with profound intellectual and multiple disabilities: The prevalence and associations between these conditions 深度智障和多重残疾幼儿的身体健康状况：这些病症的发病率和关联性

IF 1.9 4区医学 Q2 PEDIATRICS

Child Care Health and Development

Pub Date : 2024-03-23 DOI: 10.1111/cch.13252

Anouk Mol-Bakker, Annette A. J. Van der Putten, Wim P. Krijnen, Aly Waninge

Background

It is thought that physical health conditions start at a young age in people with profound intellectual and multiple disabilities (PIMD). Knowledge regarding the prevalence, associations and development of these physical health conditions could be used for purposes of prevention as well as appropriate care and support but is currently lacking.

Objective

The aim of this study is to gain insight into the prevalence of physical health conditions and associations between these conditions in young children with PIMD.

Methods

The study used cross-sectional data related to the physical health conditions of children with PIMD (n = 51, aged between 12 and 61 months). Data were collected in Belgium and in the Netherlands through a checklist filled in by primary caregiver(s). Physical health conditions were classified into categories by the 10th revision of the International Classification of Diseases and Related Health Problems (ICD-10) system. The number of physical health conditions and associations between them were analysed. The analysis focused on prevalence rates and associations represented by odds ratios (p < 0.05). A graphical model was estimated to represent dependencies and conditional dependencies between physical health conditions.

Results

We found a mean of 3.8 (range 1–8, SD 1.9) physical health conditions per child. Most of the physical health conditions were found in the ICD-10 chapter ‘Nervous System’, with hypotonia as the most frequent at 70.6%. Five significant large associations were found between spasticity–contractures (OR 9.54); circulatory system–contractures (OR 7.50); scoliosis–contractures (OR 10.25); hearing impairments–skin problems (OR 58.20) and obstipation–hypotonia (OR 19.98).

Conclusion

This study shows that at a young age, multiple physical health conditions are present in children with PIMD. In addition, we found five associations between physical health conditions.

背景人们认为，深度智力障碍和多重残疾（PIMD）患者的身体健康状况始于年轻时。有关这些身体健康状况的流行、关联和发展的知识可用于预防以及适当的护理和支持，但目前还缺乏这方面的知识。本研究旨在深入了解智障幼儿身体健康状况的患病率以及这些状况之间的关联。方法该研究使用了与患有多发性骨髓增生异常综合症的儿童身体健康状况有关的横断面数据（n = 51，年龄在 12 到 61 个月之间）。数据是在比利时和荷兰通过由主要照顾者填写的检查表收集的。身体健康状况按照《国际疾病和相关健康问题分类》（ICD-10）第 10 次修订版进行分类。对身体健康状况的数量及其之间的关联进行了分析。分析的重点是患病率和以几率比（p < 0.05）表示的关联。我们估算了一个图形模型，以表示身体健康状况之间的依赖关系和条件依赖关系。结果我们发现每个儿童的平均身体健康状况为 3.8（范围 1-8，标准差 1.9）。大多数身体健康状况都出现在 ICD-10 的 "神经系统 "一章中，其中肌张力低下最为常见，占 70.6%。研究发现，痉挛-肌张力障碍（OR 9.54）、循环系统-肌张力障碍（OR 7.50）、脊柱侧弯-肌张力障碍（OR 10.25）、听力障碍-皮肤问题（OR 58.20）和便秘-肌张力障碍（OR 19.98）之间存在五种重大关联。结论本研究表明，患有多发性骨髓增生异常综合征的儿童在年幼时就存在多种身体健康问题。此外，我们还发现身体健康状况之间存在五种关联。

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引用次数: 0

“From All, To All”: Implementing a collaborative online conference to reflect on the daily living of individuals with cerebral palsy "从所有人中来，到所有人中去"：开展在线协作会议，反思脑瘫患者的日常生活。

IF 1.9 4区医学 Q2 PEDIATRICS

Child Care Health and Development

Pub Date : 2024-03-22 DOI: 10.1111/cch.13254

Beatriz S. Vieira, Marina J. Airoldi, Deborah Chalfun, Rafael G. A. S. Bonfim, Rachel Teplicky, Peter Rosenbaum, Marisa C. Mancini, Marina B. Brandão

Background

Translating knowledge to improve paediatric rehabilitation has become a research area of interest. This study describes the development and evaluation of an online conference that brought together perspectives of individuals with cerebral palsy (CP), families, health care professionals, and researchers to discuss the daily living of individuals with CP.

Methods

We anchored the development and implementation of the online conference in the action cycle of the Knowledge to Action Framework. To develop the meeting, we included representatives from each stakeholder group in the programme committee. The conference programme was designed having the lifespan perspective of individuals with CP, from birth to adulthood, as its central core, with themes related to daily living (e.g., self-care, mobility, and continuing education). Participants' satisfaction with the conference was assessed using an anonymized online survey sent to all participants.

Results

The conference had 1656 attendees, of whom 675 answered the online satisfaction survey. Most participants rated the structure of the conference (i.e., quality of the technical support, audio and video, and online platform) and discussed topics (i.e., relevance, content, discussion, speakers, and available time) positively.

Conclusion

Collaborative conferences that include stakeholders throughout the planning and implementation are a viable, effective knowledge translation strategy that allows for sharing experiences and disseminating knowledge among families and individuals with CP, health care professionals, and researchers.

背景：转化知识以改善儿科康复已成为一个备受关注的研究领域。本研究介绍了在线会议的开发和评估，该会议汇集了脑瘫患者、家属、医护人员和研究人员的观点，共同讨论脑瘫患者的日常生活：方法：我们根据 "从知识到行动框架 "的行动周期来开发和实施在线会议。为了开发会议，我们在计划委员会中加入了各利益相关群体的代表。会议日程的设计以从出生到成年的CP患者的生命周期视角为核心，主题涉及日常生活（如自我护理、行动能力和继续教育）。通过向所有与会者发送匿名在线调查问卷，评估与会者对会议的满意度：会议共有 1656 人参加，其中 675 人回答了在线满意度调查。大多数与会者对会议结构（即技术支持、音频和视频以及在线平台的质量）和讨论主题（即相关性、内容、讨论、发言人和可用时间）给予了积极评价：将利益相关者纳入整个规划和实施过程的合作会议是一种可行、有效的知识转化策略，可在患有脊髓灰质炎的家庭和个人、医疗保健专业人员以及研究人员之间分享经验和传播知识。

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引用次数: 0

Child and adolescent participation measurement tools and their translations: A systematic review 儿童和青少年参与测量工具及其翻译：系统综述。

IF 1.9 4区医学 Q2 PEDIATRICS

Child Care Health and Development

Pub Date : 2024-03-18 DOI: 10.1111/cch.13248

Yunwha Jeong, Sujin Kim, Ji-A Lee, Hyunkyung Kim

Background

Numerous participation measurement tools targeting children and youth have been developed. Despite the translation of these tools into specific languages and cultures, the reliability and validity of the translated versions remain uncertain. To address this gap in knowledge, this study aims to identify tools for assessing the participation of children aged 5–18 years and to appraise the psychometric properties of their translated versions.

Methods

Four electronic databases were searched for peer-reviewed studies published in English. Preferred Reporting Items for Systematic Reviews guidelines was followed. Study titles and abstracts were screened by four independent reviewers. Data were extracted for both original and translated versions of eligible tools. Instrument quality assessments were performed using the Outcome Measures Rating Form Guidelines. Any discrepancies were resolved by consensus.

Results

Out of the 31 measurement tools examined, 18 tools had at least one translated version available, and among those original measurement tools, a total of 58 translated versions were identified. The most widely translated tool was the Physical Activity Questionnaire for Children (12 languages), and the most frequently translated language was Chinese (7 tools). Most translated versions verified internal consistency and content validity. Only three translated versions were verified inter-rater reliability, and seven translated versions were tested criterion validity with the gold standard tools assessing participation of children (e.g., accelerometer, Pediatric Evaluation of Disability Inventory and four 24-h recalls). None of the translated versions were tested for intra-rater reliability and responsiveness.

Conclusions

These findings can support the selection of psychometrically sound tools for children with disabilities, given their culture and language, and tool quality.

背景：针对儿童和青少年的参与测量工具层出不穷。尽管这些工具已被翻译成特定的语言和文化，但翻译版本的可靠性和有效性仍不确定。为了填补这一知识空白，本研究旨在确定评估 5-18 岁儿童参与情况的工具，并评估其翻译版本的心理测量特性：方法：我们在四个电子数据库中搜索了以英语发表的经同行评审的研究。方法：在四个电子数据库中搜索了经同行评审的英文版研究报告。研究标题和摘要由四位独立审稿人进行筛选。对符合条件的工具的原始版本和翻译版本进行数据提取。工具质量评估采用《结果测量评分表指南》进行。任何不一致之处均以协商一致的方式解决：在所研究的 31 种测量工具中，18 种工具至少有一种翻译版本，在这些原始测量工具中，共发现了 58 种翻译版本。翻译最多的工具是《儿童体育锻炼问卷》（12 种语言），翻译最多的语言是中文（7 种工具）。大多数翻译版本都验证了内部一致性和内容有效性。只有 3 个翻译版本通过了评分者之间的信度验证，7 个翻译版本通过了评估儿童参与情况的金标准工具（如加速度计、儿科残疾评估量表和 4 个 24 小时回忆）的标准效度测试。没有一个翻译版本接受过评分者内部可靠性和反应性测试：考虑到残疾儿童的文化、语言和工具质量，这些研究结果有助于为残疾儿童选择心理测量学上可靠的工具。

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引用次数: 0

Low and very low birthweight disadvantage in compulsory education achievement and the transition to upper secondary education in the Finnish birth cohorts of 1987 to 1997 1987年至1997年芬兰出生组群中低出生体重儿和超低出生体重儿在义务教育成绩和高中教育过渡方面的劣势。

IF 1.9 4区医学 Q2 PEDIATRICS

Child Care Health and Development

Pub Date : 2024-03-15 DOI: 10.1111/cch.13243

Matti Lindberg

Background

We compared the educational achievements of very low-birthweight (VLBW) and low-birthweight (LBW) adolescents (ages 16 to 19) to those of their normal-birthweight (NBW) peers in the complete Finnish birth cohorts of 1987 to 1997. We focused on three key phases of the education process: the end of compulsory education (9th-grade completion), and the transition to and the completion of upper secondary-level education.

Methods

We used register data on grades, educational transitions and completed education. We employed multiple indicators on the progression of the education process and estimated population-level and within-families linear probability (LPM) models with robustness checks at the population level using logistic regression. We tested whether parental education and the child's sex modify the association between (V)LBW and educational achievement.

Results

Results of both descriptive analysis and the population-level and within-family LPM models indicate that (V)LBW is associated with an increased risk of not being able to keep up with the normative education process and to compete for upper secondary education study places at the end of compulsory education. The modifying effect of parental education was robust, whereas that of the child's sex was not. Among (V)LBW students who were able to keep up with the normative education process, (V)LBW was not associated with a lower grade point average or with a meaningfully lower probability of completing upper secondary education by the normative age.

Conclusions

The upper secondary-level educational choices and achievements of the children born with (V)LBW who managed to complete the standard compulsory education curriculum and complete the transition to upper secondary-level education within the expected time did not, in essence, differ from those of the NBW children. Some specific characteristics of the Finnish education system likely contributed to these results, such as the grading at compulsory education being only relatively loosely standardized.

背景：我们比较了芬兰1987年至1997年完整出生队列中超低出生体重（VLBW）和低出生体重（LBW）青少年（16至19岁）与正常出生体重（NBW）同龄人的教育成就。我们重点研究了教育过程的三个关键阶段：义务教育结束（九年级毕业）、过渡到高中教育以及完成高中教育：我们使用了有关年级、教育过渡和完成教育的登记数据。我们采用了有关教育过程进展的多个指标，并利用逻辑回归对人口水平和家庭内线性概率（LPM）模型进行了估计，同时进行了稳健性检查。我们检验了父母教育程度和儿童性别是否会改变（V）低体重儿与教育成就之间的关联：结果：描述性分析和人口水平及家庭内 LPM 模型的结果表明，(V)LBW 与无法跟上正常教育进程和在义务教育结束时竞争高中学习名额的风险增加有关。父母教育程度的调节作用是稳健的，而儿童性别的调节作用则不稳健。在能够跟上正常教育进程的(V)枸杞血症学生中，(V)枸杞血症与较低的平均学分绩点无关，也与在正常年龄完成高中教育的概率显著降低无关：结论：(V)LBW先天性心脏病患儿在高中教育阶段的选择和成绩，与那些非正常体重儿相比，并无本质区别，他们都能完成标准的义务教育课程，并在预期时间内完成向高中教育的过渡。芬兰教育体系的一些特殊性很可能是造成这些结果的原因，例如义务教育阶段的分级标准相对松散。

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引用次数: 0

Quality of life of families and siblings of children and adolescents with meningomyelocele 患有脑膜瘤的儿童和青少年的家人和兄弟姐妹的生活质量。

IF 1.9 4区医学 Q2 PEDIATRICS

Child Care Health and Development

Pub Date : 2024-03-14 DOI: 10.1111/cch.13246

Bruno Leonardo Scofano Dias, Maura Calixto Cecherelli de Rodrigues, José Luiz Muniz Bandeira Duarte

Background

Children with meningomyelocele may require continuous care. Consequently, there is a risk for caregiver burden and impact on family quality of life (QoL), including siblings' QoL. Some studies analysed caregivers' burden and family QoL separately. However, none of these studies evaluated siblings' QoL and the associations between these three dimensions. This study investigated the associations between caregivers' burden, family QoL and siblings' QoL in Brazilian families of children with meningomyelocele and its correlations with sociodemographic, functional and clinical variables. Siblings' QoL was specifically assessed using as a parameter the QoL of typically developed Brazilian children.

Methods

One hundred and fifty families, 150 caregivers and 68 siblings completed the Family Quality of Life Scale, Burden Interview, KIDSCREEN-27 Child and Adolescent Version and Parents Version questionnaires.

Results

Most families and caregivers reported a high family QoL and a low caregiver burden. Family QoL was significantly lower as caregivers' burden increased. Caregiver's burden was significantly lower with increasing family QoL levels. Self-reported siblings' QoL was significantly worse than that of typically developed peers. There were no significant differences between self and parent-reported siblings' QoL. Self-reported siblings' QoL was significantly worse as their age increased and better with increasing family QoL levels. Parent-reported siblings' QoL was significantly worse with increasing levels of caregiver's burden and significantly better as family QoL increased. There were no significant associations with functional and clinical variables.

Conclusions

Despite the cross-sectional nature of the available data precludes any statements of causality, our results reinforce the relevance of knowing the factors that influence the QoL of families and siblings of children and adolescents with meningomyelocele and the relevance of actions aimed at reducing caregivers' burden, improving family QoL and meeting siblings' individual needs. Future multicenter studies may validate the generalizability of our findings.

背景：脑膜瘤患儿可能需要持续护理。因此，护理人员的负担和家庭生活质量（QoL）可能会受到影响，包括兄弟姐妹的 QoL。一些研究对护理人员的负担和家庭生活质量分别进行了分析。然而，这些研究都没有评估兄弟姐妹的 QoL 以及这三个维度之间的关联。本研究调查了巴西脑膜瘤患儿家庭中照顾者负担、家庭 QoL 和兄弟姐妹 QoL 之间的关系，以及它们与社会人口学、功能和临床变量的相关性。具体评估兄弟姐妹的 QoL 时，将发育正常的巴西儿童的 QoL 作为参数：150个家庭、150名照顾者和68名兄弟姐妹完成了家庭生活质量量表、负担访谈、KIDSCREEN-27儿童和青少年版以及父母版问卷：结果：大多数家庭和照顾者都表示家庭生活质量较高，照顾者负担较轻。随着照护者负担的加重，家庭生活质量明显降低。随着家庭 QoL 水平的提高，照顾者的负担也明显减轻。自我报告的兄弟姐妹的 QoL 明显低于正常发育的同龄人。自我报告的兄弟姐妹的 QoL 与父母报告的兄弟姐妹的 QoL 之间没有明显差异。随着年龄的增长，自我报告的兄弟姐妹的 QoL 明显降低，而随着家庭 QoL 水平的提高，自我报告的兄弟姐妹的 QoL 则有所提高。父母报告的兄弟姐妹的 QoL 随着照顾者负担的增加而明显变差，随着家庭 QoL 的增加而明显变好。该研究与功能和临床变量无明显关联：尽管现有数据的横断面性质排除了任何因果关系的陈述，但我们的研究结果加强了了解影响脑膜瘤患儿和青少年的家庭和兄弟姐妹的 QoL 的因素的重要性，以及旨在减轻照顾者负担、改善家庭 QoL 和满足兄弟姐妹个人需求的行动的重要性。未来的多中心研究可能会验证我们研究结果的普遍性。

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引用次数: 0

What characterizes adolescent young carers? A multigroup comparative study 青少年照顾者的特点是什么？多组比较研究

IF 1.9 4区医学 Q2 PEDIATRICS

Child Care Health and Development

Pub Date : 2024-03-11 DOI: 10.1111/cch.13244

Jade Pilato, Kristopher Lamore, Christel Vioulac, Eléonore Jarrige, Géraldine Dorard, Aurélie Untas

<div> <section> <h3> Context</h3> <p>To identify the characteristics of adolescent young carers (AYCs), studies in the literature have compared them with non-AYCs, but without considering that in the latter group, some face the illness of a relative whereas others do not.</p> </section> <section> <h3> Objectives</h3> <p>The aims of the study were (1) to identify the characteristics of AYCs as compared with adolescents who are not young carers but are facing the illness/disability of a relative, or adolescents not facing the illness/disability of a relative, and (2) to identify factors associated with being a carer within adolescents facing a relative illness.</p> </section> <section> <h3> Methods</h3> <p>A total of 4000 high school students (grades 10–12, mainly aged 15–17 years, 568 identified as AYCs, 1200 as adolescents facing the illness/disability of a relative without being a carer and 2232 as adolescents not facing the illness/disability of a relative) completed a self-reported questionnaire assessing sociodemographic characteristics, illness/disability in the family, caregiving activities (MACA-YC18 and specific emotional support scale), quality of life (KIDSCREEN-10) and mental health (GHQ-12). Chi-square tests, ANOVAs and logistic regressions were performed.</p> </section> <section> <h3> Results</h3> <p>AYCs scored lower on the quality-of-life measure compared with adolescents not facing the illness/disability of a relative (<i>p</i> < .001) and had poorer mental health compared with adolescents facing the illness/disability of a relative without being a carer and adolescents not facing the illness/disability of a relative (<i>p</i> < .001). Logistic regressions showed that youth were more at risk to be an AYC when they were females (<i>p</i> < .001), when they had an extracurricular job (<i>p</i> < .001), spoke another language at home (<i>p</i> < .01), had siblings and were one of the oldest siblings (<i>p</i> < .001), and when the relative had a serious or chronic physical illness (<i>p</i> < .001) and lived with the youth (<i>p</i> < .001).</p> </section> <section> <h3> Conclusions</h3> <p>These results highlight the importance of distinguishing AYCs, adolescents facing the illness/disability of a relative without being a carer and adolescents not facing the illness/disability of a relative to better describe AYCs, recognizing that as the level of care provided might change over time, adolescents facing the ill

背景：为了确定青少年照顾者（AYCs）的特征，文献中的研究将他们与非青少年照顾者进行了比较，但没有考虑到在后一群体中，有些青少年照顾者面临着亲属患病的问题，而另一些则没有：本研究的目的是：(1) 确定青少年照顾者与非青少年照顾者但面临亲属生病/残疾的青少年或未面临亲属生病/残疾的青少年相比的特征；(2) 确定面临亲属生病的青少年中与照顾者身份相关的因素：共有 4000 名高中生（10-12 年级，主要年龄在 15-17 岁之间，其中 568 人被认定为 AYCs，1200 人被认定为面临亲属患病/残疾但未成为照顾者的青少年，2232 人被认定为未面临亲属患病/残疾的青少年）填写了一份自我报告问卷，对社会人口特征、家庭中的患病/残疾情况、照顾活动（MACA-YC18 和特定情感支持量表）、生活质量（KIDSCREEN-10）和心理健康（GHQ-12）进行了评估。对这些指标进行了卡方检验、方差分析和逻辑回归：结果：与未面临亲属患病/残疾的青少年相比，青少年心理健康中心的青少年在生活质量方面的得分较低（p 结论：青少年心理健康中心的青少年在生活质量方面的得分较低（p）：这些结果凸显了区分 "亚健康青少年"、面临亲属生病/残疾但未成为照顾者的青少年和未面临亲属生病/残疾的青少年的重要性，以便更好地描述 "亚健康青少年"，同时认识到随着时间的推移，所提供的照顾水平可能会发生变化，面临亲属生病/残疾但未成为照顾者的青少年可能会成为 "亚健康青少年"，反之亦然。专业人员可以利用这些因素来更好地识别 "助人自助者"。

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