Reducing barriers and improving access to support for young carers (REBIAS-YC)
| ISRCTN | ISRCTN13478876 |
|---|---|
| DOI | https://doi.org/10.1186/ISRCTN13478876 |
| Secondary identifying numbers | NIHR129645 |
- Submission date
- 11/12/2020
- Registration date
- 15/12/2020
- Last edited
- 27/09/2024
- Recruitment status
- No longer recruiting
- Overall study status
- Completed
- Condition category
- Other
Plain English summary of protocol
Background and study aims
The study aims to improve support and quality of life for the many children and young people in England who provide support to family members or friends who are disabled, have mental or physical ill health, or misuse drugs or alcohol. These are sometimes called young or young adult carers. In our study, we will focus on the experiences of children and young people aged 9-25. Research shows that some young carers and the people they care for do not receive all the services and support that they need. Some young carers may face additional difficulties. Research is needed to understand why this is the case and ensure support is given to those most in need of it. We want this study to help answer two main questions. Firstly, what are the difficulties faced by young carers and the people they support in seeking, accessing, and receiving the right type of support at the right times? Secondly, what services and support do they find helpful, what support would they like, and what needs would it meet?
Who can participate?
Children and young people aged between 9 and 25 providing unpaid care in England and the people they support
What does the study involve?
Focus groups and in-depth interviews.
What are the possible risk and benefits of participating?
The possible risks are the time taken to read the Information Sheet and take part in a focus group or interview and that the questions we ask about what services and support people get or do not get, may feel uncomfortable or upsetting to some people. Such questions will be kept to a minimum and participant do not need to answer any questions they do not wish to and can withdraw from the interview or focus group at any time without giving a reason. Support measures are in place for people taking part, as needed. The possible benefits to taking part are both direct and indirect. There may be benefits to sharing experiences and hearing about other people’s experiences in a supportive environment. There may also be a benefit from contributing to research that may lead to improved support for young carers and the people they support. That support may help young carers in the longer term.
Where is the study run from?
Care Policy and Evaluation Centre, London School of Economics and Political Science (LSE) (UK)
When is the study starting and how long is it expected to run for?
January 2021 to December 2022
Who is funding the study?
National Institute for Health Research (NIHR) (UK)
Who is the main contact?
Nicola Brimblecombe
n.s.brimblecombe@lse.ac.uk
Contact information
Scientific
London School of Economics and Political Science
Houghton Street
London
WC2A 2AE
United Kingdom
 ORCID ID |
0000-0002-6147-5726 |
|---|---|
| Phone | +44 (0)207 955 6376 |
| n.s.brimblecombe@lse.ac.uk |
Study information
| Study design | In-depth qualitative study utilising focus groups and in-depth semi-structured interviews |
|---|---|
| Primary study design | Observational |
| Secondary study design | Qualitative study |
| Study setting(s) | Community |
| Study type | Other |
| Participant information sheet | Not available in web format, please use contact details to request a participant information sheet. |
| Scientific title | What are the barriers to young carers accessing carer support services and/or services for the recipient of care, and what interventions and support services are acceptable to these groups and the persons they look after? |
| Study acronym | REBIAS-YC |
| Study objectives | The aims and objectives are to explore the following questions: 1. What components, features and/or types of interventions, services and other support are, or would be, acceptable to young carers and the people they support? 2. What additional support is perceived as needed? 3. What are the barriers experienced by young carers in seeking and accessing services for themselves or the person they support? 4. What are the barriers and facilitators for practitioners in providing support and services perceived as acceptable by young carers and the people they support? 5. What are the estimated costs of providing support and services perceived as acceptable? How do these compare to the estimated economic implications of not meeting those needs? |
| Ethics approval(s) | Approved 11/05/2021, LSE Ethics Committee (London School of Economics and Political Science, Houghton Street, London, WC2A 2AE, UK; no telephone number available; l.grove@lse.ac.uk), ref: 1247 |
| Health condition(s) or problem(s) studied | Children and young people aged between 9 and 25 providing unpaid care and the people they support |
| Intervention | Current intervention as of 28/01/2022: This is an in-depth qualitative study that aims to ask questions about services and support received and needed, and barriers to accessing and receiving support. A total of 6-8 focus groups will be held in each of four localities in England, with approximately 8 participants per group. Focus groups will be co-facilitated by project workers in the local areas and will aim to discuss participants’ experiences with services, features of services and support needed, and barriers to seeking support. One-to-one in-depth semi-structured interviews (approx. 18 in total) will be conducted where participants prefer this alternative. Data will be collected at one point in time with no follow up. Previous intervention: This is an in-depth qualitative study that aims to ask questions about services and support received and needed, and barriers to accessing and receiving support. A total of 6-8 focus groups will be held in each of three localities in England, with approximately 8 participants per group. Focus groups will be co-facilitated by project workers in the local areas and will aim to discuss participants’ experiences with services, features of services and support needed, and barriers to seeking support. One-to-one in-depth semi-structured interviews (approx. 18 in total) will be conducted where participants prefer this alternative. Data will be collected at one point in time with no follow up. 'Workshops' refer to practitioner workshops to explore the applicability of the findings to practice. Mention of workshops should be deleted from the current trial registration. I apologise for this error. |
| Intervention type | Other |
| Primary outcome measure | Difficulties in seeking, accessing, and receiving support measured using focus groups and one-to-one interviews at one point in time analysed using inducive thematic analysis |
| Secondary outcome measures | There are no secondary outcome measures |
| Overall study start date | 01/03/2019 |
| Completion date | 31/12/2022 |
Eligibility
| Participant type(s) | Mixed |
|---|---|
| Age group | Mixed |
| Sex | Both |
| Target number of participants | Up to 144 |
| Total final enrolment | 133 |
| Key inclusion criteria | Current participant inclusion criteria as of 28/01/2022: Children and young people aged between 9 and 25 providing unpaid care and the people they support in four specific pre-defined (confidential) localities in England Previous participant inclusion criteria: Children and young people aged between 9 and 25 providing unpaid care and the people they support in three specific pre-defined (confidential) localities in England |
| Key exclusion criteria | Current participant exclusion criteria as of 28/01/2022: 1. Carers aged 26+ and the people they support 2. Children and young people aged between 9 and 25 providing unpaid care not living in one of the four specific pre-defined (confidential) localities in England Previous participant exclusion criteria: 1. Carers aged 26+ and the people they support 2. Children and young people aged between 9 and 25 providing unpaid care not living in one of the three specific pre-defined (confidential) localities in England |
| Date of first enrolment | 01/05/2021 |
| Date of final enrolment | 01/05/2022 |
Locations
Countries of recruitment
- England
- United Kingdom
Study participating centre
London
WC2A 2AE
United Kingdom
Sponsor information
University/education
Houghton Street
London
WC2A 2AE
England
United Kingdom
| Phone | +44 (0)20 7405 7686 |
|---|---|
| research.ethics@lse.ac.uk | |
| Website | http://www.lse.ac.uk/home.aspx |
"ROR" |
https://ror.org/0090zs177 |
Funders
Funder type
Government
Government organisation / National government
- Alternative name(s)
- National Institute for Health Research, NIHR Research, NIHRresearch, NIHR - National Institute for Health Research, NIHR (The National Institute for Health and Care Research), NIHR
- Location
- United Kingdom
Results and Publications
| Intention to publish date | 01/09/2023 |
|---|---|
| Individual participant data (IPD) Intention to share | No |
| IPD sharing plan summary | Not expected to be made available |
| Publication and dissemination plan | Planned publication of papers in peer-reviewed academic journals; articles in practitioner journals; presentations at academic and practitioner conferences; findings workshop; policy/briefing papers. |
| IPD sharing plan | The datasets generated during and/or analysed during the current study are not expected to be made available as data generated are not suitable for sharing beyond that contained within the project outputs because of privacy, safety and data protection |
Study outputs
| Output type | Details | Date created | Date added | Peer reviewed? | Patient-facing? |
|---|---|---|---|---|---|
| Results article | 01/09/2024 | 27/09/2024 | Yes | No |
Editorial Notes
27/09/2024: Publication reference and total final enrolment added.
28/01/2022: The following changes have been made:
1. The ethics approval has been added.
2. The study design has been changed from "In-depth qualitative study utilising focus groups, workshops and in-depth semi-structured interviews" to "In-depth qualitative study utilising focus groups and in-depth semi-structured interviews".
3. The overall trial end date has been changed from 31/03/2022 to 31/12/2022.
4. The intervention has been updated.
5. The participant inclusion criteria have been updated.
6. The participant exclusion criteria have been updated.
7. The recruitment end date has been changed from 01/01/2022 to 01/05/2022.
8. The plain English summary has been updated to reflect the changes above.
21/01/2022: The overall trial end date has been changed from 31/12/2022 to 31/03/2022 and the plain English summary has been updated accordingly.
04/01/2021: The recruitment end date has been changed from 01/01/2021 to 01/05/2021.
15/12/2020: Trial’s existence confirmed by National Institute for Health Research (NIHR).
