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临床试验/NCT03069430
NCT03069430已完成不适用

Self Management for Families and Youth: Phase I

Medical University of South Carolina1 个研究点 分布在 1 个国家目标入组 44 人开始时间: 2016年8月1日最近更新:
适应症

试验速览

阶段
不适用
状态
已完成
入组人数
44
试验地点
1
主要终点
End-user perceptions of intervention using semi-structured, key informant interviews

研究概览

简要总结

This study is being conducted to test an intervention for children and adolescents ages 8-17 years with sickle cell disease and their families. In the first phase of this study, key informant interviews are being conducted with health care providers and children ages 8-17 with sickle cell disease and their primary caregivers. Participants are asked to review the intervention and provide feedback that will inform revision to the intervention.

详细描述

Key informant, semi-structured interviews are conducted using an interview guide to obtain expert provider (healthcare providers of children with SCD) and end-user (children and parents/caregivers) feedback on the intervention. Interview questions are designed to solicit information on advantages and disadvantages, perceived usefulness, and recommendations for improvement on the intervention. The interviews will last approximately 1 hour and are audio recorded. Recordings are transcribed for analysis. Data are analyzed using a deductive-inductive approach with the intervention as a framework for initial categories. Findings will inform revisions to the intervention. Feasibility testing of the revised intervention will be conducted in the next phase of the study.

研究设计

研究类型
Observational
观察模型
Cohort
时间视角
Cross Sectional

入排标准

年龄范围
18 Years 至 —(Adult, Older Adult)
性别
All
接受健康志愿者

入选标准

  • Children ages 8-17 years and their primary caregiver
  • Child with SCD as indicated by self/parent report or report from MUSC Pediatric Sickle Cell clinic staff
  • Child has been seen at the MUSC Pediatric Sickle Cell clinic for at least 6 months
  • MUSC Pediatric Sickle Cell clinic staff report preventive recommendations are followed by child/caregiver
  • Health care providers:
  • Age 18 years or older
  • Healthcare professional with at least 6 months' experience caring for children with SCD

排除标准

  • Non-English speaking
  • Inability or unwillingness to participate in a one-on-one interview
  • Inability or unwillingness of parent/caregiver or health care provider to give informed consent and of child to give assent

结局指标

主要结局

End-user perceptions of intervention using semi-structured, key informant interviews

时间窗: through study completion, approximately one hour

Themes or categories developed from analysis of qualitative data on child/caregiver perceptions of the intervention.

Expert provider perceptions of intervention using semi-structured, key informant interviews

时间窗: through study completion, approximately one hour

Themes or categories developed from analysis of qualitative data on health care provider perceptions of the intervention.

次要结局

未报告次要终点

研究者

申办方类型
Other
责任方
Principal Investigator
主要研究者

Shannon Phillips

PhD, RN, Assistant Professor

Medical University of South Carolina

研究点 (1)

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