ISRCTN70227207已完成未知
The provision of antenatal information for the NHS Newborn Bloodspot Screening Programme (NBSP): a two phase sequential exploratory mixed methods project
niversity of Manchester (UK)0 个研究点目标入组 1,219 人开始时间: 2013年4月3日最近更新:
适应症
试验速览
- 阶段
- 未知
- 状态
- 已完成
- 发起方
- 入组人数
- 1,219
研究概览
简要总结
暂无简介。
研究设计
- 研究类型
- Observational
入排标准
- 性别
- All
入选标准
- •1. Health professionals: All regional screening co-ordinators
- •2. Midwives with experience of providing NBSP information in the community or a hospital.
- •3. Parents: a sampling framework will be constructed to ensure maximum variation. Parents will be included from across the screening pathway (e.g. antenatally, screening conducted but results not received, post results) as research suggests that parents ability to process information during this time are reduced increasing the likelihood of recollection biases, making the use of whole pathway recollection designs problematic as they are likely to capture particularly salient recollections, rather than a realistic assessment of information needs. Using immediacy recall has been advocated in this setting. Parents will be sought with a range of results including negative, positive and false positives (for each disorder). Participation of parents who do not speak fluent English will be facilitated by offering study materials in their own language and providing interpreters. Specific attempts will also be made to ensure participation of fathers, young parents and those with lower education achievement as these are commonly underrepresented in the research or may have different communication needs.
- •Study 3: Practising midwives of any grade
- •Study 4: Practising midwives of any grade and adults of child bearing age (18+ years)
- •Study 5: A hypothetical cohort of parents and up to five NBSP experts
- •Study 6: Participants from study 2. Key stakeholders for cystic fibrosis and sickle cell NBSPs.
排除标准
- •Study 2: Parents whose child has died or their child was born prematurely; who had newborn screening performed >180 days, or where multiple abnormalities were identified. Parents who do not have the capacity to consent
- •Study 4: Parents who do not read English fluently due to the linguistic demands of the discrete choice experiment (DCE)
- •Study 6: Parents who require interpreters will be excluded from focus groups due to the fast paced discussion style of focus groups. Low participation rates of non-English speakers in research are likely to make it impractical to run language specific groups. These parents' views will be collected via interviews with translators
研究者
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