Caring Lives: What do young people with caring responsibilities for family members need to thrive?
Lead Research Organisation:
CARDIFF UNIVERSITY
Department Name: Sch of Social Sciences
Abstract
My PhD studied why the impacts of caring vary for different children and young people depending on their individual lives. Young carers research has focused on those who access young carer projects due to having substantial responsibilities, and I was keen to study the wider young carer spectrum, in order to better understand the positive and negative effects:
My main findings included:
- Young carers who feel in control of their roles are often able to manage their responsibilities alongside their education and social lives. Threats to this control include excessive responsibilities, unstable roles and regular medical tasks.
- Support from family members, community and services can help young carers who have less control over their roles. The relationship between the young carer and the care receiver is particularly important.
- Research with all young carers is vital to understanding the difference between manageable responsibilities and problematic care. Working with the wider spectrum can also informed support that is tiered to meet the needs of the whole group.
- Young carer policy and awareness raising currently reflects the minority of young carers with substantial responsibilities. Policy and messaging that is reflective of the wider group can reduce stigma and privacy among young carers and their families.
My fellowship will enable me to publish multiple articles from my PhD and to build a track record as a mixed methods researcher. My findings have the potential to affect policy and practice and I will organise a national young carers event, in addition to presenting to and meeting with key groups in Wales and the wider UK. In addition I will access training and develop funding bids for further young carers research.
My main findings included:
- Young carers who feel in control of their roles are often able to manage their responsibilities alongside their education and social lives. Threats to this control include excessive responsibilities, unstable roles and regular medical tasks.
- Support from family members, community and services can help young carers who have less control over their roles. The relationship between the young carer and the care receiver is particularly important.
- Research with all young carers is vital to understanding the difference between manageable responsibilities and problematic care. Working with the wider spectrum can also informed support that is tiered to meet the needs of the whole group.
- Young carer policy and awareness raising currently reflects the minority of young carers with substantial responsibilities. Policy and messaging that is reflective of the wider group can reduce stigma and privacy among young carers and their families.
My fellowship will enable me to publish multiple articles from my PhD and to build a track record as a mixed methods researcher. My findings have the potential to affect policy and practice and I will organise a national young carers event, in addition to presenting to and meeting with key groups in Wales and the wider UK. In addition I will access training and develop funding bids for further young carers research.
Organisations
People |
ORCID iD |
| Edward Janes (Principal Investigator / Fellow) |
Publications
Janes E
(2024)
A Longitudinal Analysis Comparing the Mental Health of Children By Level of Young Carer Status
in Journal of Adolescence
Janes Edward Alex
(2024)
Variation in support by family, specialist project and mainstream services improves, mitigates and exacerbates the impacts of young carer responsibilities
in INTERNATIONAL JOURNAL OF CARE AND CARING
| Description | The aim of the one-year postdoctoral fellowship was not to generate new knowledge but to increase the impact and dissemination of my previous PhD study. The key findings are therefore in the context of those impact and dissemination aims which were divided into 4 groups: 1. Publication of 3-4 academic articles, plus presenting at at least one academic conferences: Two papers have been submitted to date: one a longitudinal structural equation modelling of how impacts the impacts of caring vary over time; the other a phenomenological paper on young carer support. Both are still in peer review. A third paper is nearing submission. I also presented at the Voluntary Sector and Volunteering Research Conference on child caring responsibilities as a form of volunteering, and whether it is a choice if no alternatives for support are provided. 2. Non-academic dissemination of findings: Engagement activities during the year included presenting a masterclass on researching young carers as a marginalised group; running a half-day event for professionals and practitioners; presenting an Informing policy seminar on the wider young carer spectrum; writing a blog on the wider spectrum; and developing a social media presence. In addition to the planned activities I also led a response to the UK Government inquiry on life opportunities for young carers and young adults carers. 3. Attending training to reinforce and enhance skills learnt during my PhD studies: As planned I attended a week-long advanced quant training course on longitudinal modelling, and another week-long training course on working with marginalised populations. I also attended Cardiff university's Fellowship Support program, a set of six half-day sessions for academics interested in applying for full fellowships. All these courses will enhance future funding applications. 4. Funding bids: I applied for a three-year fellowship, reaching the interview stage, and also submitted a bid for a two-year research project. |
| Exploitation Route | The aim of the fellowship was to further disseminate the findings of my doctoral study, particularly concerning the presence of a wider young carer spectrum which is rarely studied. There is significant potential to take this key idea of the young carer spectrum forward, especially in terms of the diversity of the population and the need to tier support in health care, education, and specialist young carer project settings. Future research could look to trial ideas for research in the different settings. In addition, there are known issues concerning how to identify and support a group that is often stigmatised and private. With my research one of the few attempts to recruit young carer participants from the general population, there is scope to take this further as well. |
| Sectors | Communities and Social Services/Policy Education Healthcare |
| Description | The major focus of the fellowship was to disseminate the original findings of my doctoral study (Caring Lives) with policy officers and practitioners. While research has long hypothesised the presence of a young carer spectrum, research has been hampered by how to reach this larger and often private group. My mixed-methods study used cohort data and a school-based population approach to study this larger group, resulting in original findings on the diversity of the group, how positive and negative impacts vary depending on caring responsibilities and the home environment, and the need to tier support to the wider group. At the halfway point of the one-year fellowship (March 2023) I had held meetings with policy officers including the Welsh Government's Unpaid Carers and Older People's Team, and with practitioners including Carers Trust Wales and the Young Carers Alliance, Children in Wales (host of the Young Carers Network) and YMCA Swansea. In addition, I facilitated a half day Exchange session for policy makers and practitioners that included an initial presentation on my work, followed by groupwork on opportunities and implications, as well as discussions on future research and the potential to build an evidence base of research with practitioners. The fellowship also includes the development of funding bids for future work. Development of these relationships, particularly with Carers Trust Wales and YMCA Swansea, have also informed the development of two bids - for a three-year fellowship, and a two-year school based project respectively. Reporting in March 2024, the second half of the fellowship included work to further the developing relationship with groups including Carers Trust Wales and the YMCA, but also additional dissemination of findings and impact. In particular, I led a response on behalf of Cardiff University's children's social care team (CASCADE) to a UK inquiry on life opportunities for young carers and young adult carers, spoke at an Cardiff University Informing Policy events for politicians and decision makers, and shared my expertise for a piece of research commissioned by Welsh Government to improve support for young adult carers. While the three-year fellowship funding bid progressed to interview, neither application were successful. Reporting in March 2025, two articles were recently published, both of which were submitted during the one-year fellowship. One concerns the importance of support for young carers in mitigating the negative effects of the caring role, and how the level of support needed, as well as the source of the support, varies for young carers in different parts of the spectrum. The second was a quantitative paper modelling the differences in mental health over time depending on caring role (ie. substantial responsibilities vs non-substantial responsibilities vs children with no caring role. In addition I attended the International Young Carer Conference in 2024 where I ran a workshop to present and consult on my model of the young carer spectrum, and presented a seminar on the challenges of recruiting young carers as a marginalised group that are reluctant to disclose their status, resulting in them being hard to identify. |
| First Year Of Impact | 2023 |
| Sector | Education,Healthcare,Government, Democracy and Justice |
| Impact Types | Societal Policy & public services |
| Description | Informing Welsh Government commissioned research on supporting young adult carers |
| Geographic Reach | National |
| Policy Influence Type | Contribution to a national consultation/review |
| Description | Leading CASCADE response to UK Government Inquiry into life opportunities for young carers and young adult carers |
| Geographic Reach | National |
| Policy Influence Type | Contribution to a national consultation/review |
| URL | https://carers.org/downloads/appg-for-young-carers-and-young-adults-carers-reportlr.pdf |
| Description | Development of social media presence (Twitter) |
| Form Of Engagement Activity | Engagement focused website, blog or social media channel |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Media (as a channel to the public) |
| Results and Impact | Development of social media challenge linked to my doctoral study (Caring Lives) and my one-year fellowship. Main focus is on young carers, both in terms of highlighting key pieces of my own work, but also interesting research and practice, but also tweeting on wider children's social care, public health and rights. |
| Year(s) Of Engagement Activity | 2023 |
| URL | https://twitter.com/EdJanesResearch |
| Description | Exchange seminar on the Young Carer spectrum |
| Form Of Engagement Activity | Participation in an activity, workshop or similar |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Professional Practitioners |
| Results and Impact | Exchange seminar link up researchers with practitioners to enable two-way conversations. This half-day event included a presentation by me on the key results of the Caring Lives study that are of relevance to policy makers and practitioners. The second half of the event included group discussions and feedback on opportunities and implications for work, plus group work on the potential to develop research with practitioners that could inform an evidence base. These activities will inform future work and bid development. The intention was to make a video of the presentation available but the audio / video quality was poor. This was therefore rerecorded. |
| Year(s) Of Engagement Activity | 2023 |
| URL | https://www.youtube.com/watch?v=CRXVKMHFsRY |
| Description | Informing Policy seminar on research findings: Young carers: Investigating the wider spectrum to better support and identify those with problematic responsibilities |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Policymakers/politicians |
| Results and Impact | The Informing Policy events are organised by Cardiff University as a way of linking applied research with politicians and policy makers. The seminar, 'Young carers: Investigating the wider spectrum to better support and identify those with problematic responsibilities' sought to recognise and reinforce the negative impacts of problematic caring roles, but also to highlight the high prevalence, the wide-ranging experiences and impacts, and the need for support to be tiered towards this diversity. The events require a voice from practice which was provided by Carers Trust Wales. |
| Year(s) Of Engagement Activity | 2023 |
| Description | Making sense of increasing young carer prevalence - cause for concern or finding the hidden population? |
| Form Of Engagement Activity | Engagement focused website, blog or social media channel |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Media (as a channel to the public) |
| Results and Impact | New blog to mark Young Carer Action Day (15/03/2023), on the increase in young carer prevalence, and how to interpret. Blog focuses on improved availability of large-scale dataset which allow us better reach previously hidden young carers, and how it enables the study of problematic caring responsibilities in the context of a larger population who have lesser caring roles. |
| Year(s) Of Engagement Activity | 2023 |
| URL | https://cascadewales.org/making-sense-of-increasing-young-carer-prevalence-cause-for-concern-or-find... |
| Description | Masterclass on working with young carers as a marginalised population |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Other audiences |
| Results and Impact | CASCADE Masterclasses are presented to academics and practitioners with an interest in research. This class focused on working with marginalised groups, with a focus on young carers. The session considered the issues that make many young carers hidden, before focusing on the challenges faced in attempting to recruit young carers from the general population, but also the resulting original findings. |
| Year(s) Of Engagement Activity | 2023 |
| Description | Meetings and presentations |
| Form Of Engagement Activity | Participation in an activity, workshop or similar |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Professional Practitioners |
| Results and Impact | Meetings with individual groups including Carers Trust Wales, the Welsh Government's Unpaid Carers and Older People's Team, Children in Wales and YMCA Swansea to share the key results of the Caring Lives study, discuss next steps, and identify possible ways to work together. In addition, I have been attending Young Carer Alliance meetings that bring together practitioners and policy officers from the UK and internationally. This has led to working together on future work plans and the development of funding bids. |
| Year(s) Of Engagement Activity | 2022,2023,2024 |
| Description | Presenting at Fellowship Writing Day for academics interested in applying for fellowships |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Other audiences |
| Results and Impact | The Fellowship Writing Day was organised by the HCRW for health and social work academics who were interested in applying for fellowships . The main focus was to start a conversation on how to identify relevant topics, but also the process of applying for different schemes. As one of several presenters, each a fellow on a different scheme, I presented on key aspects of the ESRC Post Doctoral Fellowship, including key dates, the application process, and the need for it to link to the applicant's PhD study. I also discussed my own PhD and follow up fellowship s an example. |
| Year(s) Of Engagement Activity | 2023 |
| Description | Presenting at the VSSN conference on children's choice to be young carers |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Professional Practitioners |
| Results and Impact | Presenting at conference for people interested in voluntary sector and volunteering (including practitioners, professionals, academics). Presented concerned young carers responsibilities as a form of volunteering or civil society, and whether caring responsibilities can be a legitimate choice when no alternative support is in place. |
| Year(s) Of Engagement Activity | 2023 |
| Description | Running workshop at International Young Carers Conference (2024) |
| Form Of Engagement Activity | Participation in an activity, workshop or similar |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Professional Practitioners |
| Results and Impact | 75 minute workshop at International Young Carers Conference. Workshop included a presentation on a model of the young carer spectrum, with this followed by questions and comments. The workshop also included engagement activities where attendees were able to suggest changes. |
| Year(s) Of Engagement Activity | 2024 |
| Description | Seminar at International Young Carers Conference 2024 |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Professional Practitioners |
| Results and Impact | Presentation to approximately 80 people on young carers as a marginalised population and the need to develop methods for identifying a group often reluctant to disclose this information. Followed by questions and comments on the value of the work, and the potential for further research |
| Year(s) Of Engagement Activity | 2024 |
| Description | WISERD seminar on quantitative findings |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Other audiences |
| Results and Impact | Internal Cardiff University seminar for WISERD research centre on the quantitative component of the Caring Lives studies. This included a focus on young carer prevalence in the dataset, the descriptive summary, and the structural equation modelling results on young carer mental health compared to non-young carers over time, and also those with substantial responsibilities compared to other respondents over time. The feedback and questions informed a quantitative paper. |
| Year(s) Of Engagement Activity | 2022 |