A Study to Co-produce, and Explore the Impact of, an App-based Support Intervention on Young Carers
试验速览
- 阶段
- 不适用
- 状态
- 已完成
- 发起方
- 入组人数
- 50
- 试验地点
- 2
- 主要终点
- To understand young carer experiences, co-produce and develop an App for young carers 11yrs-18yrs age range in order to improve outcomes for family members and young carers
研究概览
简要总结
This study will co-produce and pilot-test a mobile phone App and a booklet, with input from local secondary schools and carer support groups to develop and pilot-test the App, in order to ensure it is designed to meet young people's needs. This App will serve to increase knowledge, information and provide strong links for young carers and local support available.This is a mixed methods study, using a transformative design. A transformative approach centres on users' needs and uses their experiences to shape how the App will look (in this case, uses are young carers). Carers will co-produce the App and booklet. The study will explore how a free app-based online support tool can help enhance support for young carers. Young carers have been involved since the outset and drove this planned study.
详细描述
This study will provide evidence about App usage in young carers (YCs), there is no evidence to date on this to the researcher's knowledge. While there are articles and reports on young carers and their experiences there is very little actual empirical research, partly due to the hard-to-reach population and their carer responsibilities and associated experiences (such as carer burden).
The study seeks to identify the gap between estimated and actual numbers of young carers, as part of Stage 3, which will again add to the evidence base as this has not previously been reported. The study will be able to describe the impact of a technology-based intervention to increase support for YCs.
This research will also contribute to understanding how App-based support can help YC, specifically exploring how receiving centralised, comprehensive information regarding: looking after their own health; having time off from carer duties and resources to support them getting this; self-awareness or self-identification of carer responsibilities and the impact of being a carer, might help.
Young Carers have also talked about the need for networks and support; these individuals will then be able to access Young Carers in Herts - and find support locally via professionals (they can access links to counsellors via the App -in order to receive mental health support) as well as other young carers (peer support, identified as very important in other recent local work).
This proposed research, through the qualitative interviews and focus groups, will also allow investigators to contribute an in-depth picture of (including a longitudinal description from the YCs in-depth interviews over the course of a year) of young carers' needs, and identify where needs are not being met and what could be done to improve their experiences. Having contextual data from interviews from peers (senior school age children), who may themselves end up becoming young carers, will also give us data to contrast.
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
- 11 Years 至 18 Years（Child, Adult）
- 性别
- All
- 接受健康志愿者
- 是
入选标准
- •School children from nominated schools in Hertfordshire (stage 1)
- •Ability to provide informed consent (consent processes/literature will be age appropriate 11-17) (stage 2)
- •Able to complete questionnaires (stage 2)
排除标准
- •Does not speak or understand English
- •Lacks mental capacity
- •Young carers outside Hertfordshire
结局指标
主要结局
To understand young carer experiences, co-produce and develop an App for young carers 11yrs-18yrs age range in order to improve outcomes for family members and young carers
时间窗: 18 months
Measured by qualitative feedback on the app via transcriptions. Includes understanding of transition points such as admission/discharge to hospital.
次要结局
- Gain understanding of App usage(18 months)
- Formulation of a Young Carer Handbook(18 months)
- Explore usefulness of the App and experience of caring over time(18 months)
- Capture information on referral rates of Young Carers before and after App introduction(18 months)