Co-designing Support Strategies for Parents to Encourage Early Engagement With Health Services During the First Year Following Their Child's Diagnosis of Sickle Cell Disorder
试验速览
- 阶段
- 不适用
- 状态
- 已完成
- 入组人数
- 30
- 试验地点
- 2
- 主要终点
- Support strategies for families with a child with SCD
研究概览
简要总结
Background: Sickle cell disorder (SCD), the commonest genetic (faulty gene inherited from both parents) condition in the UK, affects mainly underserved groups. Babies with SCD must start treatments soon after birth to prevent them becoming unwell. Stigma, fear and inequalities can make it difficult for parents to accept their child's diagnosis and access appropriate treatment and support.
Aim: Develop strategies to improve support for parents during their child's first year of life following a SCD diagnosis to encourage early engagement with health services.
Method: Comprises two stages: (i) Determine why parents choose to engage with support or not (ii) Use this information to co-design strategies to ensure greater accessibility of support for parents during their child's first year of life.
Patient and Public Involvement: We are working with Sickle Cell Society and parents of children with SCD. Dissemination: Findings will be shared with support groups, charities, health professionals and academics.
研究设计
- 研究类型
- Observational
- 观察模型
- Other
- 时间视角
- Prospective
入排标准
- 年龄范围
- 18 Years 至 99 Years（Adult, Older Adult）
- 性别
- All
- 接受健康志愿者
- 是
入选标准
- •Parents whose children have been diagnosed with SCD via screening in the last 36 months
- •Health professionals involved in the care of children with sickle cell disorder
排除标准
- •Parents whose inclusion may be contradicted on psychosocial grounds or who are unable to give informed consent.
- •Health professionals who do not have experience of caring for children with sickle cell disorder.
研究组 & 干预措施
Parents of children with sickle cell disorder
Parents whose child has been diagnosed with sickle cell disorder in the last 36 months
Health professionals
Health professionals involved in the care of children sickle cell disorder
结局指标
主要结局
Support strategies for families with a child with SCD
时间窗: June 2025
Co-design strategies to ensure greater accessibility of support for parents during their child's first year of life following a SCD diagnosis
次要结局
- Parental reasons for accessing support(July 2024)
- Support priorities(Sept 2025)
- Existing support(July 2024)