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A Study to Co-produce a Young Carers App

14. juli 2026 opdateret af: East and North Hertfordshire NHS Trust

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.

Studieoversigt

Status

Afsluttet

Betingelser

Intervention / Behandling

Detaljeret beskrivelse

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.

Undersøgelsestype

Observationel

Tilmelding (Faktiske)

50

Kontakter og lokationer

Dette afsnit indeholder kontaktoplysninger for dem, der udfører undersøgelsen, og oplysninger om, hvor denne undersøgelse udføres.

Studiesteder

Deltagelseskriterier

Forskere leder efter personer, der passer til en bestemt beskrivelse, kaldet berettigelseskriterier. Nogle eksempler på disse kriterier er en persons generelle helbredstilstand eller tidligere behandlinger.

Berettigelseskriterier

Aldre berettiget til at studere

11 år til 18 år (Barn, Voksen)

Tager imod sunde frivillige

Ja

Prøveudtagningsmetode

Ikke-sandsynlighedsprøve

Studiebefolkning

Young Carers in Hertfordshire

Beskrivelse

Inclusion Criteria:

  • 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)

Exclusion Criteria:

  • Does not speak or understand English
  • Lacks mental capacity
  • Young carers outside Hertfordshire

Studieplan

Dette afsnit indeholder detaljer om studieplanen, herunder hvordan undersøgelsen er designet, og hvad undersøgelsen måler.

Hvordan er undersøgelsen tilrettelagt?

Design detaljer

Kohorter og interventioner

Gruppe / kohorte
Intervention / Behandling
Stage 1
School children age 11-18 (from two nominated schools) and young carers 11-18
Mobile phone app
Stage 2
Young carers from Young Carers in Herts 11-18
Mobile phone app

Hvad måler undersøgelsen?

Primære resultatmål

Resultatmål
Foranstaltningsbeskrivelse
Tidsramme
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
Tidsramme: 18 months
Measured by qualitative feedback on the app via transcriptions. Includes understanding of transition points such as admission/discharge to hospital.
18 months

Sekundære resultatmål

Resultatmål
Foranstaltningsbeskrivelse
Tidsramme
Formulation of a Young Carer Handbook
Tidsramme: 18 months
Co-creation of a Young Carer Handbook
18 months
Gain understanding of App usage
Tidsramme: 18 months
Number of views and downloads
18 months
Explore usefulness of the App and experience of caring over time
Tidsramme: 18 months
Transcripts of qualitative feedback
18 months
Capture information on referral rates of Young Carers before and after App introduction
Tidsramme: 18 months
Number of referrals of Young carers in Herts
18 months

Samarbejdspartnere og efterforskere

Det er her, du vil finde personer og organisationer, der er involveret i denne undersøgelse.

Datoer for undersøgelser

Disse datoer sporer fremskridtene for indsendelser af undersøgelsesrekord og resumeresultater til ClinicalTrials.gov. Studieregistreringer og rapporterede resultater gennemgås af National Library of Medicine (NLM) for at sikre, at de opfylder specifikke kvalitetskontrolstandarder, før de offentliggøres på den offentlige hjemmeside.

Studer store datoer

Studiestart (Faktiske)

20. marts 2019

Primær færdiggørelse (Faktiske)

1. december 2020

Studieafslutning (Faktiske)

1. december 2020

Datoer for studieregistrering

Først indsendt

29. januar 2019

Først indsendt, der opfyldte QC-kriterier

29. januar 2019

Først opslået (Faktiske)

31. januar 2019

Opdateringer af undersøgelsesjournaler

Sidste opdatering sendt (Faktiske)

15. juli 2026

Sidste opdatering indsendt, der opfyldte kvalitetskontrolkriterier

14. juli 2026

Sidst verificeret

1. juli 2026

Mere information

Begreber relateret til denne undersøgelse

Andre undersøgelses-id-numre

  • RD2018-70

Plan for individuelle deltagerdata (IPD)

Planlægger du at dele individuelle deltagerdata (IPD)?

INGEN

IPD-planbeskrivelse

Identifiable data will not be shared with other researchers. The publication plan in the study protocol will be followed.

Lægemiddel- og udstyrsoplysninger, undersøgelsesdokumenter

Studerer et amerikansk FDA-reguleret lægemiddelprodukt

Ingen

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Ingen

Disse oplysninger blev hentet direkte fra webstedet clinicaltrials.gov uden ændringer. Hvis du har nogen anmodninger om at ændre, fjerne eller opdatere dine undersøgelsesoplysninger, bedes du kontakte register@clinicaltrials.gov. Så snart en ændring er implementeret på clinicaltrials.gov, vil denne også blive opdateret automatisk på vores hjemmeside .

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