East and North Hertfordshire NHS Trust
Stevenage, SG14AB, United Kingdom
NCT Number: NCT03824210
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.
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Notify Me11 year–18 year
All sexes
Observational
Stevenage, SG14AB, United Kingdom
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.
This research will also help primary and secondary care providers to understand the needs and identification of this group. Although the study is not explicitly looking at this, the researchers hope to look at this in future work.
Healthy volunteers accepted: Yes
Only the study team can determine whether someone qualifies for participation.
Inclusion criteria
Exclusion criteria
Mobile phone app
Time frame: 18 months
Measured by qualitative feedback on the app via transcriptions. Includes understanding of transition points such as admission/discharge to hospital.
Time frame: 18 months
Co-creation of a Young Carer Handbook
Time frame: 18 months
Number of views and downloads
Time frame: 18 months
Transcripts of qualitative feedback
Time frame: 18 months
Number of referrals of Young carers in Herts
East and North Hertfordshire NHS Trust
Other Gov
A Study to Co-produce, and Explore the Impact of, an App-based Support Intervention on Young Carers
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