数据表2:镰状细胞病儿童发育服务的照护者和提供者观点:混合方法分析

混合方法分析镰状细胞病儿童发育服务的照护者和提供者观点,包含访谈与问卷数据。

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Caregiver and provider perspectives on developmental services for children with sickle cell disease: a mixed methods analysis

基本信息

模态
文本
大小
0.000044202 GB
许可
CC BY 4.0
创建/更新时间
2026-10-08
版本
v1

资源简介

数据表2:镰状细胞病儿童发育服务的照护者和提供者观点:混合方法分析

【一句话概览】

本数据集是 figshare 公开的文本数据集,收录 1 个文件、合计 44.20 KB,主题涵盖 sickle cell、mixed-methods、intervention、developmental、caregivers,可用于医学自然语言处理(实体识别、信息抽取等),CC BY 4.0 许可开放获取。

【数据集背景】

本数据集源站标题为《Data Sheet 2_Caregiver and provider perspectives on developmental services for children with sickle cell disease: a mixed methods analysis.docx》。配套论文《Developmental screening of three‐year‐old children with sickle cell disease compared to controls》发表于 British Journal of Haematology(2021),DOI:10.1111/bjh.17780。源站首次发布:2025-03-21。

【数据内容】

源站原始描述:IntroductionSickle cell disease (SCD) is a monogenic blood disorder characterized by neurodevelopmental delays. Most children with SCD do not receive developmental services due in part to disparities in care access. To inform the design of a developmental intervention for children with SCD, we evaluated factors that influence access to developmental services. MethodsInterview data were collected from educational and medical providers (n = 15) and caregivers (n = 15) of children aged 4–6 years wi…

【数据结构与技术规格】

文件数 1 个,合计 44.20 KB。Data Sheet 2_Caregiver and provider perspectives on developmental services for children with sickle cell disease: a mixed methods analysis.docx:application/vnd.openxmlformats-officedocument.wordprocessingml.document,44.20 KB。数据集 DOI:10.3389/fped.2025.1530457.s001。

【主题与分类】

源站学科分类:Foetal Development and Medicine。主题标签:sickle cell、mixed-methods、intervention、developmental、caregivers。

【适用方向】

文本类数据可用于医学自然语言处理,如命名实体识别、信息抽取与文本分类。

【获取与许可】

源站页面:https://frontiersin.figshare.com/articles/dataset/Data_Sheet_2_Caregiver_and_provider_perspectives_on_developmental_services_for_children_with_sickle_cell_disease_a_mixed_methods_analysis_docx/28637846

使用许可:CC BY 4.0(https://creativecommons.org/licenses/by/4.0/)。

规范引用:Tamboli, Mollie; MacArthur, Erin; Collins, Natalie; Kang, Eunyoung; Fernandez, Maria; Porter, Jerlym S.; et al. (2025). Data Sheet 2_Caregiver and provider perspectives on developmental services for children with sickle cell disease: a mixed methods analysis.docx. Frontiers. Dataset

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下载信息

注册下载

需要注册 Kaggle 账号并登录后下载,适合需要跟踪下载记录和使用 API 的用户。

暂未开放

公开下载

无需注册即可直接获取公开样本或文档,适合快速预览和评估数据集质量。

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公开数据集受托下载与技术交付服务。

提供高速下载与技术交付服务(收技术服务费,非数据销售)

暂未开放

当前数据集主要来源为 Kaggle 公开托管,完整影像包建议通过原始链接或 Kaggle API 获取。

使用方式

数据集获取(Figshare)

命令行下载

curl -L -o "Data Sheet 2_Caregiver and provider perspectives on developmental services for children with sickle cell disease: a mixed methods analysis.docx" "https://ndownloader.figshare.com/files/53141411"

文件清单

  • Data Sheet 2_Caregiver and provider perspectives on developmental services for children with sickle cell disease: a mixed methods analysis.docx(44.20 KB)

文件总体积 44.20 KB(源站 API 实测)。

数据加载示例(图像类)

from PIL import Image
import glob, os

files = (glob.glob(os.path.join(path, "**", "*.png"), recursive=True)
       + glob.glob(os.path.join(path, "**", "*.jpg"), recursive=True)
       + glob.glob(os.path.join(path, "**", "*.tif"), recursive=True))
print("图像文件数:", len(files))
img = Image.open(files[0]); print("尺寸/模式:", img.size, img.mode)

# torchvision Dataset 方式:
# from torchvision import datasets
# ds = datasets.ImageFolder(path)  # 要求 子目录=类别

目录组织与标注格式以源站说明和下载后实际文件为准。

数据说明

IntroductionSickle cell disease (SCD) is a monogenic blood disorder characterized by neurodevelopmental delays. Most children with SCD do not receive developmental services due in part to disparities in care access. To inform the design of a developmental intervention for children with SCD, we evaluated factors that influence access to developmental services.
MethodsInterview data were collected from educational and medical providers (n = 15) and caregivers (n = 15) of children aged 4–6 years with SCD at a single center and the surrounding area. Caregivers completed questionnaires about their child’‘s background/medical history, caregiver depression (PROMIS SF v1.0-8a), and caregiver knowledge of early development (Knowledge of Infant Development Inventory). A convergent design was used to integrate the qualitative and quantitative data.
ResultsWe identified three themes as factors that influence caregivers’’ access to developmental services: quality of medical and educational experiences, caregiver knowledge and beliefs about SCD and development, and caregiver preferences for developmental services. Most caregivers denied barriers to obtaining developmental services for their child, whereas providers acknowledged numerous barriers for families. Caregivers and providers shared that a positive caregiver-provider relationship facilitates access. Caregivers reported that there was limited attention to SCD within the hospital system and broader society. Caregivers displayed limited knowledge of early development, and providers identified these knowledge gaps as a barrier to utilizing developmental services. Caregivers expressed a strong interest in SCD education and community building.
ConclusionsOur mixed method analysis identified barriers and facilitators to developmental services for children with SCD.

许可

CC BY 4.0

引用

学术使用请引用 DOI 10.3389/fped.2025.1530457.s001(source: https://frontiersin.figshare.com/articles/dataset/Data_Sheet_2_Caregiver_and_provider_perspectives_on_developmental_services_for_children_with_sickle_cell_disease_a_mixed_methods_analysis_docx/28637846)。

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