Caring Lives: What do young people who care for family members need to thrive? An empirical investigation
Lead Research Organisation:
Cardiff University
Department Name: Sch of Social Sciences
Abstract
The proposal offers an original approach to the study of young carers, proposing a mixed methods approach that complements qualitative research with a longitudinal study. The research will focus on the mental health of young carers and will conclude with consideration of potential interventions that will support positive caring. It is timely given the devolved Social Services and Well-Being Act which includes the requirement to better assess and support the needs of the group.
To build on previous research and develop theory on the mechanisms underpinning young carers and mental health, in order to inform the practice required under the Social Services and Well-Being Act. Specific research questions are as follows:
1. Does longitudinal data support previous qualitative research on the mental well-being impacts of being a young carer?
2. How does the mental well-being of young carers compare with their peers?
3. What are the causal mechanisms underpinning caring and well-being?
4. What are the levers in policy and practice that can enable change and better support young carers?
5. What does an intervention for supporting positive care look like?
To build on previous research and develop theory on the mechanisms underpinning young carers and mental health, in order to inform the practice required under the Social Services and Well-Being Act. Specific research questions are as follows:
1. Does longitudinal data support previous qualitative research on the mental well-being impacts of being a young carer?
2. How does the mental well-being of young carers compare with their peers?
3. What are the causal mechanisms underpinning caring and well-being?
4. What are the levers in policy and practice that can enable change and better support young carers?
5. What does an intervention for supporting positive care look like?
Organisations
Publications
Janes E
(2022)
Young Carer Perception of Control: Results of a Phenomenology with a Mixed Sample of Young Carers Accessing Support and Unknown to Services.
in International journal of environmental research and public health
Janes E
(2022)
Young carers, mental health and psychosocial wellbeing: A realist synthesis.
in Child: care, health and development
Studentship Projects
| Project Reference | Relationship | Related To | Start | End | Student Name |
|---|---|---|---|---|---|
| ES/P00069X/1 | 01/10/2017 | 30/09/2027 | |||
| 1945656 | Studentship | ES/P00069X/1 | 01/10/2017 | 30/03/2021 | Edward Janes |
| Description | The first stage, a realist synthesis of previous studies, resulted in an initial model of why the impacts of caring varied for individual children depending on their circumstances. The realist model included three domains concerning caregiving responsibilities, the support that they receive, and whether they have a positive caregiving identity. In considering the value of the synthesis, the model increased clarity within the research field, though further work was needed to refine the model. In particular, a focus on work with young carers unknown to services was needed due to them being largely absent from research. The second research component concerned a qualitative study that recruited young carers unknown to services as well as those accessing support - the first study to do so. As a result, perception of control emerged as an original finding, with differentiation between young carers with manageable roles, reduced control and enhanced risk. The previous negative impacts identified in past research are reframed as threats to control. A final component was longitudinal structural equation modelling of cohort study data to compare the mental health of young carers to children without caring responsibilities over time. Young carers research is predominantly a qualitative field and the innovative method highlighted the initial benefits of caring that become increasingly negative over time, particularly for young carers with more substantial responsibilities. Together the mixed-methods technique enabled refinement of the original realist model. |
| Exploitation Route | The study sought to return to the young carer debates of the 1990s, and it was argued that these had not been revisited and resolved. These debates informed the methods used in the study and produced significant original findings. As a result, a key outcome of the study is the need for a diversification of methods. Specifically: - The research highlights the importance of studying the whole young carer spectrum to better understand those with problematic roles, and there is significant potential to further study control as a way to differentiate between levels of care and possible impacts. - Study of the whole spectrum relies on qualitative research with the whole population, and there is significant potential for research on how to recruit young carers as a hard-to-reach group. - In addition the quantitative findings also highlighted the need for further research that studies the mental health of young carers compared to other children, and how the impacts change over time. |
| Sectors | Education,Healthcare |
| Description | Carers Trust Wales pilot handbook for training school leads who then train others |
| Geographic Reach | Local/Municipal/Regional |
| Policy Influence Type | Influenced training of practitioners or researchers |
| Title | Realist diagnostic of young carers and their mental health in the natural system |
| Description | The realist diagnostics is adapted from the realist synthesis method where an intervention is evaluated on the basis of its success in enabling positive change for the population. As part of this the evaluation identifies CMO (Context - Mechanism - Outcome) configurations, and which mechanisms have been targeted by the intervention with the aim of triggering change that will lead to positive outputs. The realist diagnostic amends this traditional approach by mapping the mechanisms that exist in the natural system, the contextual factors that have the potential to trigger these mechanisms and the outcomes that result. Once mapped there is the potential to identify mechanisms that could be the target of future interventions. This was developed for a study of young carers mental health. The diagnostic identified and screened past young carers studies, before analysing the resulting 45 papers to identify configurations that exist. |
| Type Of Material | Physiological assessment or outcome measure |
| Year Produced | 2019 |
| Provided To Others? | No |
| Impact | Currently the biggest impact has been in my own research. The tool has enabled the development of an initial theory which I am refining further with quantitative and qualitative methods. As of March 2020 this has not been published. However it has been submitted to a journal for publication, and I will be presenting on this work at a realist conference in March 2020. |
| 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 | 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/publications-and-resources/blogs/ |
| 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 |
| 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 |
| Description | Young carers blog |
| Form Of Engagement Activity | A magazine, newsletter or online publication |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Professional Practitioners |
| Results and Impact | DECIPHer blog to mark Young Carer Awareness Day, which celebrates the work of young carers but also campaigns for improved support. The blog is entitled "How can research shape the future of young carer services?". The purpose was to highlight the role that initial young carers research had in increasing the profile of young carers in policy and legislation, and in prompting the development of support groups across the UK. This was followed by raising questions over challenges in the area of research and how these need to be resolved for research start impacting policy and practice again. The post reflects the introduction for my PhD and the framing for the Caring Lives study It is difficult (as an online blog) to know how many people this reached but it was promoted through DECIPHer's Twitter account, with it picked up and promoted by Carers organisations in Wales and the UK. |
| Year(s) Of Engagement Activity | 2020 |
| URL | http://decipher.uk.net/how-can-research-shape-the-future-of-young-carer-services/ |