CaringNCT03824210
A Study to Co-produce a Young Carers App
An observational study of Caring, run by East and North Hertfordshire NHS Trust at 1 site in United Kingdom.
Trial summary
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. Read more about this study
- Who is it for?
- Ages 11 to 18 yearsHealthy volunteers can take part
- Conditions the study is for
- Caring
- What is being tested?
- App
- How many people
- 50 participants
- Where
- 1 siteUnited Kingdom
- Study dates
- 20 Mar 2019to 1 Dec 2020
- Phase
- Observational
- Are there results?
- None posted in the registry
Key requirements
Who can take part, as listed by the sponsor. Only the study team can confirm whether you are eligible, so take this list to your doctor.
- Ages 11 to 18 years
- All sexes
- Healthy volunteers accepted
- Child, Adult
Study population: Young Carers in Hertfordshire
Who may be able to join
- 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)
Who cannot join
- Does not speak or understand English
- Lacks mental capacity
- Young carers outside Hertfordshire
Trial locations and contacts
1 site in 1 country.
United Kingdom1 site
East and North Hertfordshire NHS Trust
Stevenage, SG14AB
About this study
Official title: A Study to Co-produce, and Explore the Impact of, an App-based Support Intervention on Young Carers
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.
Read the detailed description
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.
- Conditions
- Caring
- Being tested
- App
What participants receive
What participants receive. In a randomised study each person is assigned to one group by chance.
AppOther
Mobile phone app
| Study group | Role | What they receive |
|---|---|---|
| Stage 1 | School children age 11-18 (from two nominated schools) and young carers 11-18 Receives: Other: App | |
| Stage 2 | Young carers from Young Carers in Herts 11-18 Receives: Other: App |
What is being measured
The primary outcome is the main question the study is designed to answer.
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
Measured by qualitative feedback on the app via transcriptions. Includes understanding of transition points such as admission/discharge to hospital.
Measured: 18 months
Secondary outcomes (4)
Formulation of a Young Carer Handbook
Co-creation of a Young Carer Handbook
Measured: 18 months
Gain understanding of App usage
Number of views and downloads
Measured: 18 months
Explore usefulness of the App and experience of caring over time
Transcripts of qualitative feedback
Measured: 18 months
Capture information on referral rates of Young Carers before and after App introduction
Number of referrals of Young carers in Herts
Measured: 18 months
Timeline
From the start of the study to its completion; the mark is today. Estimated dates are the sponsor’s plan.
- First posted31 Jan 2019
- Study start20 Mar 2019
- Primary completion1 Dec 2020
- Study completion1 Dec 2020
Resources
- Official record on ClinicalTrials.govThe registry entry this page is built from, with its full change history.
- Other trials for CaringStudies of the same condition, open and under way.
- What the trial phases meanHow a treatment moves from first tests in people to approval.
More details
For doctors and researchers: how the study is designed, who runs it, and its registry IDs.
Study design
- Study type
- Observational
- Observational model
- Other
- Time perspective
- Prospective
- Enrolment
- 50 participants (actual)
Sponsor and investigators
- Lead sponsor
- East and North Hertfordshire NHS Trust
- Sponsor type
- Other government
- Responsible party
- Sponsor
IDs, dates and publications
- ClinicalTrials.gov ID
- NCT03824210
- Sponsor's protocol ID
- RD2018-70
- Status last verified
- Jul 2026
- First submitted
- 29 Jan 2019
- Last updated
- 15 Jul 2026
- Results posted
- No
- Data monitoring committee
- No
- FDA-regulated drug
- No
- FDA-regulated device
- No
- Individual data sharing
- No: Identifiable data will not be shared with other researchers. The publication plan in the study protocol will be followed.
Study at a glance
From the registry record, last updated by the sponsor on 15 Jul 2026. Recruitment status is as the sponsor reported it: confirm with the study team.
- Official title
- A Study to Co-produce, and Explore the Impact of, an App-based Support Intervention on Young Carers
- ClinicalTrials.gov ID
- NCT03824210
- Acronym / sponsor ID
- RD2018-70
- Conditions
- Caring
- Study type
- Observational
- Recruitment status
- Completed
- Enrolment
- 50 participants (actual)
- Lead sponsor
- East and North Hertfordshire NHS TrustOther government
- Study start
- 20 Mar 2019 (actual)
- Primary completion
- 1 Dec 2020 (actual)
- Study completion
- 1 Dec 2020 (actual)
- First posted
- 31 Jan 2019 (actual)
- Results
- Not posted in the source record
Clinical summary
The research question as the sponsor registered it. This describes what the study plans to test, not what it found.
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.
Detailed description
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.
Study design
- Observational model
- Other
- Time perspective
- Prospective
- Number of arms
- 2
| Arm | Type | Receives |
|---|---|---|
| Stage 1 | – | Other: AppSchool children age 11-18 (from two nominated schools) and young carers 11-18 |
| Stage 2 | – | Other: AppYoung carers from Young Carers in Herts 11-18 |
Who may qualify
- Ages
- 11 to 18 years
- Sex
- All
- Healthy volunteers
- Accepted
- Age groups
- Child, Adult
- Study population
- Young Carers in Hertfordshire
Key inclusion criteria (3 listed)
- 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)
Key exclusion criteria (3 listed)
- Does not speak or understand English
- Lacks mental capacity
- Young carers outside Hertfordshire
Eligibility is decided by the study team after screening; this overview does not establish that a patient qualifies. Full inclusion and exclusion criteria.
Interventions
| Intervention | Type | Arms |
|---|---|---|
| AppMobile phone app | Other | Stage 1, Stage 2 |
Primary outcome
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
Time frame: 18 months
Measured by qualitative feedback on the app via transcriptions. Includes understanding of transition points such as admission/discharge to hospital.
4 secondary outcomes
Formulation of a Young Carer Handbook
Time frame: 18 months
Gain understanding of App usage
Time frame: 18 months
Explore usefulness of the App and experience of caring over time
Time frame: 18 months
Capture information on referral rates of Young Carers before and after App introduction
Time frame: 18 months
Results and safety
The study is completed, but results are not available in the source record. That does not mean the treatment did or did not work.
Research links
- Official record on ClinicalTrials.govLast updated by the sponsor 15 Jul 2026.
- Individual participant dataSharing planned: No. Identifiable data will not be shared with other researchers. The publication plan in the study protocol will be followed.
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Referral and contact
AzTrials does not enrol participants or take referrals. Contact the study team or a site listed below; they decide who can take part. This study is not recruiting at the moment.
The record lists no contact. Use the official record to reach the sponsor.
1 site in 1 country: see every site and its status.
Questions about this trial
What is this clinical trial studying?
An observational study of Caring, run by East and North Hertfordshire NHS Trust at 1 site in United Kingdom.
The full registered description is in the About this study section and the official record.
Who may be eligible to take part?
The sponsor lists 3 inclusion and 3 exclusion criteria. Eligibility is decided by the study team after screening, so read the full criteria and contact a listed site.
Is this clinical trial currently recruiting?
The record says: finished, as of the sponsor's last update on 15 Jul 2026. Status can change between updates, so confirm with the study contact before making plans.
Where is the study taking place?
The record lists 1 site in United Kingdom. Whether a site is taking part right now should be confirmed with that site. See every site.
What are the possible benefits and risks?
They depend on the study and the treatment, and no study can promise a benefit. The study team explains the known risks during informed consent, before anyone joins; the record itself does not list them.
Are results available for this study?
The study is completed, but results are not available in the source record. That does not mean the treatment did or did not work.
How can a doctor refer a patient or contact the research team?
The record lists no contact. The official record names the sponsor, who can be asked directly. AzTrials does not enrol participants or take referrals.
What does the primary outcome measure?
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 (time frame: 18 months). It is what the study was designed to measure, not a finding.
Where can I read the original study information?
Does a listing mean the treatment is approved or proven to work?
No. A listing means the study is registered. It does not show that the treatment is safe, works, or is approved by a regulator.
How often is this information updated?
AzTrials copies changed records from ClinicalTrials.gov every night and reloads the whole registry every week. The sponsor last updated this record on 15 Jul 2026.