Patient and Public Involvement and Engagement in Research on Life-limiting Conditions With Children and Young People With Sickle Cell Disorder and Their Families
试验速览
- 阶段
- 不适用
- 状态
- 进行中（未招募）
- 入组人数
- 20
- 试验地点
- 1
- 主要终点
- Workshops with participants to develop resources that enable children and young people with sickle cell disorder and their families to engage in research
研究概览
简要总结
Aim: To co-produce resources for inclusive and equitable Patient and Public Involvement and Engagement in research on life-limiting conditions, with children and young people with sickle cell disorder and their families.
Methods: Workshops with a) members of a patient advocacy organisation (Sickle Cell Society n=5) b): i) Children and young people (10-18 years) with sickle cell disorder (n=15) and ii) their siblings (10-18 years, n=10) and iii) their parents (n=15), c) Researchers form the Cicely Saunders Institute Outputs: Resources that enable children and young people with sickle cell disorder and their families to engage in research
详细描述
Aim:
To co-produce resources for inclusive and equitable Patient and Public Involvement and Engagement in research on life-limiting conditions, with children and young people with sickle cell disorder and their families.
Objectives:
- Partner and collaborate with the Sickle Cell Society to continue to build on the work of the Cicely Saunders Institute to support a thriving Patient and Public Involvement and Engagement community that includes children and young people and their families
- Listen, hear, and understand what is important for children and young people with sickle cell disorder and provide them with the knowledge and skills to collaborate with researchers at the Cicely Saunders Institute during the design and implementation, analysis, and publication of research
- Equip staff within the Cicely Saunders Institute with the knowledge, understanding and awareness of the role children and young people with sickle cell disorder and their families can play in patient-involved research to ensure pathways for prioritizing and disseminating patient led research are realised
- Use data from objectives 1-3 to co-produce resources that may be used with a broader population of children and young people with serious and life-limiting conditions and their families to enable them to become equal partners in research
- Use learning from the proposed project with the Sickle Cell Society as an exemplar partnership, to inform future Patient and Public Involvement and Engagement with children and young people with other serious and life-limiting conditions including cancer and neuro-disabilities as the investigators expand the research remit at the Cicely Saunders Institute.
Background:
研究设计
- 研究类型
- Observational
- 观察模型
- Cohort
- 时间视角
- Prospective
入排标准
- 年龄范围
- 10 Years 至 —（Child, Adult, Older Adult）
- 性别
- All
- 接受健康志愿者
- 否
入选标准
- •Group A: Members of a patient advocacy organisation (Sickle Cell Society n=5)
- •i) Children and young people (10-18 years) with sickle cell disorder (n=15) ii) their siblings (10-18 years, n=10) iii) their parents (n=15)
- •Group C: Researchers working with children with life-limiting or life changing conditions
排除标准
- •Group A: Members of patient advocacy organisations other than the Sickle Cell Society
- •i) Children and young people younger than ten years or older than 18 years and those without sickle cell disorder (n=15) ii) siblings younger than ten years or older than 18 years and without a brother or sister with sickle cell disorder iii) parents of children with conditions other than sickle cell disorder
- •Group C: Researchers who do not have experience working with children with life-limiting or life changing conditions
结局指标
主要结局
Workshops with participants to develop resources that enable children and young people with sickle cell disorder and their families to engage in research
时间窗: 8 months
Resources that enable children and young people with sickle cell disorder and their families to engage in research
次要结局
未报告次要终点