Every other month, the Research Ambassador Network host a seminar where we invite speakers to share research on valuable topics relating to health and care. Earlier this year, Research Ambassador Megan Leach and Research Manager Dr Kate Mahoney worked together over several months to co-produce a seminar showcasing how young carers can get involved in research. Megan has lived experience as a young carer and raises awareness about the need to listen to young carers’ voices. Here, Megan and Kate reflect on the meeting and highlight how young carers can be best supported to take part in research.
Championing young carers’ involvement in research
In May, we assembled a panel to present at our Research Ambassador Network seminar. The panel included researchers already doing excellent work to involve young carers in research. We also invited young carers to share their reflections. Speakers on our panel included:
- Dr Nicola Brimblecombe who works at the London School of Economics and does research on improving support for young carers.
- Megan Leach, who shares her own experiences to champion how to support young carers to get involved in research. You can read a powerful blog written by Megan about her experiences navigating the journey of becoming a carer here.
- Beth Neale, then the Research Manager at the Carers Trust – a national charity that work to transform the lives of unpaid carers.
- Jane Stokes, who leads Carers Voices at Healthwatch Essex, a project capturing the views of Essex residents to improve support for unpaid carers.
The meeting also featured a written reflection from Grace who shared her experiences as a young carer for her brother.
Supporting young carers to take part in research
In generously sharing her experiences, Megan discussed why it is important to listen to young carers. Below, she has identified different articles and resources that answer important questions on how and why to involve carers in research.
Why is it important for carers to get involved within research?
‘Whilst there have been improvements in public and patient involvement in research, there is still work to do to increase the diversity of those involved – this includes unpaid carers. These people provide unpaid support to a family member, partner and/or friend, often just because the need arises. Carers are the backbone of care delivery in the UK, therefore their voice is unique, highly important and cannot be forgotten’.
– Jarvis, S., Rennard, U., & Bowness, B. (2023) Why is it important to involve unpaid carers in research. Available at: https://www.nihr.ac.uk/blog/why-it-important-involve-unpaid-carers-research
What can carers contribute to research involvement?
‘Research does not have to be about carers to involve carers, however, they often get overlooked. There are several reasons why involving carers is important and beneficial to your research, to name a few:
- The impact of services/treatments on carers are different from those on the service user, but are equally important as carers can be a key part to the jigsaw of making services work
- They can support the person they care for to be involved to ensure their voice is heard or
- They can act as an advocate for those they care for if they are not able to do so themselves
Ultimately, involving carers as a voice in your research will improve the quality of your research, make it more applicable to different communities and aid the successful implementation of your findings into practice. Carers can also benefit from being involved. They say they value the experience and can feel empowered by the chance to make a difference.’
– Jarvis, S., Rennard, U., & Bowness, B. (2023) Why is it important to involve unpaid carers in research. National Institute of Health Research. Available at: https://www.nihr.ac.uk/blog/why-it-important-involve-unpaid-carers-research
What does public involvement mean for carers?
‘Being involved is not the same as taking part in a trial or study to test a new treatment or care option. It’s about being a member of the research team that works together to design and run the study.
We define public involvement in research as research being carried out ‘with’ or ‘by’ members of the public rather than ‘to’, ‘about’ or ‘for’ them.
When we use the term ‘public’, we are including:
- Patients and potential patients
- Carers and people who use health and social care services
- People from organisations that represent people who use services.’
– National Institute of Health Research (undated) Public involvement in research. Available at: https://www.nihr.ac.uk/get-involved/public-involvement
How can carers contribute to health research?
‘Patients, carers, people who use social care services and health and social care professionals all use this evidence to make decisions about treatments and care.
When the public gets involved in research, they work alongside researchers to help shape:
- What research gets done
- How it’s carried out
- And how the results are shared and applied in practice’.
– National Institute of Health Research (undated) Public involvement in research. Available at: https://www.nihr.ac.uk/get-involved/public-involvement
What should researchers consider when involving carers in their research?
‘While it may not be possible to be prescriptive, as each case may need to be different, we would recommend the following broad approach to researchers to answer the question “who do I need to involve?”:
- Consider who has direct experience of the topic being investigated and therefore who has relevant experiential knowledge – is this very specific to one condition, a number of conditions, specific health inequalities or cultural communities? Does the stage of illness or experience of particular symptoms matter? Does it relate to a setting, or geographical place or type of care/ treatment received? What range of people might have relevant experience, including patients and carers, healthcare staff and members of the public?
- Have some initial exploratory conversations with relevant patients/carers/public to get input on your research and your ideas about how and who to involve. Test out your assumptions about who has relevant experience in these conversations. Ask them who else may need to be involved. This could be done informally on the phone, over coffee etc.
- Consider and develop a range of approaches to involving people that meet the practical and support needs of the people you have identified as important to involve. This might mean setting up a group that meets formally. It might mean working with patients and carers to reach people in their community that you might otherwise find difficult to involve. It might mean going out into the community, for example visiting people at home, in a care home or attending community group meetings, so that you can have conversations with the most appropriate people.
- Ensure the approaches you use are fair and do not exclude people who have relevant experiential knowledge to contribute, including people who are seldom heard.’
– Staley, K., Stewart, D., & Wilson, R. (2021) Who should I involve in my research and why? Patients, carers or the public? Research Involvement and Engagement. Available at: https://researchinvolvement.biomedcentral.com/articles/10.1186/s40900-021-00282-1
Tips for carers to get involved and stay involved in health and care research
Here, Megan shares her own tips for carers who are interested in getting involved in research:
- Remember that you have a voice.
- Know that sharing your views and experiences as a carer is important, values, worthwhile and can make a difference.
- It’s okay to say no and it’s okay to stop.
- Be mindful of your own capacity and limits. Don’t feel pressured to over-extend yourself and to let people know if you need to step back.
- Being involved in research is an opportunity to learn and develop. Take advantage of the chance to learn from others, inquire about available training, and reflect on the skills you have gained through your involvement. Consider ways you can continue to grow and develop in your role as a contributor.
- Your own needs as a carer are important. Keep in mind your own needs as a carer, in addition to those of the person you care for, and make sure to ask for them to be taken into account.
How can you get involved?
If you are a young carer who is interested in getting involved in research or sharing your voice to improve support for young carers, you may like to get involved in the following opportunities:
- The All-Party Parliamentary Group (APPG) for Young Carers and Young Adult Carers brings together MPs from across the government to improve the lives of young carers. Young carers are invited to share their views and experiences at regular meetings. If you have any questions about how to get involved in the APPG, please email: [email protected].
- Healthwatch Essex Carers Voices – our team are currently recruiting Experts by Experience to share their views on what it’s like to be a young carer. By sharing your experiences in a supportive setting, you can help to improve support for carers across Essex. If you are interested in getting involved, or have any questions, please email [email protected] or phone 0300 500 1895.
Contact us
If you are a young carer who would like to share their experiences or are looking for support please contact our Carers Voices team by phoning 0300 500 1895 or emailing: [email protected].
If you would like the PowerPoint slides and recording from our meeting, would like more information about the Research Ambassador Network or are interested in getting involved in research please contact our Research Manager Kate at: [email protected].