Working with young carers

By Elizabeth Olson, University of North Carolina at Chapel Hill

 

In the UK and the US, care work is largely undertaken by women and is either unpaid or poorly compensated. Being a family or home carer can be isolating and precarious, especially when carer identity intersects with race, ability, age, sexuality, citizenship status, and are thus subject to systematic and violent discrimination.

My research and translational work focus on the intimate ways that care happens, how this is stitched into the structures of our societies, and how the ethics of care challenge us to think about new conceptions of justice. I consider a range of factors, from supports for carers in schools, to housing provisions, to policies and laws that determine who gets defined as a carer and thus gains access to key supports. In the past ten years, I’ve been working with non-profit organisations, government agencies, and with researchers from diverse disciplines to better understand and support young carers and their families in the United States.

Increasingly, I’ve turned my attention to identifying ways that governments, schools and universities, or employers could better support child and adolescent carers. In the United States, where young carers (or ‘caregiving youth’) are largely a hidden population of potentially vulnerable youth, I create my research projects to be most impactful for complex care families. Sometimes I’m designing research and collecting data to provide a base of evidence that helps us both identify and understand the characteristics of the population here. Other times, I’m working with leaders in different sectors – education, health, government – to move the research we’ve conducted into meaningful policy and practice.

Collaboration and partnerships with non-profits and charities, government agencies, and regional and local leaders are necessary for my research to be translated into transformative ideas. I’ve been surprised by how much my humanities-informed approach, and even my tendency of quoting care ethicists in planning meetings, is valued by my collaborators.

I often refer to my process as ‘cart beside the horse’ research. As the modified metaphor suggests, being responsive to the priorities of communities and organisations while also pursing the highest quality of research can make you feel temporarily immobilized. The work requires patience and openness, because very slow progress can be positive when it leads to clearer goals, more trust, and relationships are resilient enough to withstand stress.

I’m currently conducting a research project on the everyday geographies of caregiving youth in partnership with the American Association of Caregiving Youth, a non-profit that I’ve partnered with for nine years on a wide range of research-led collaboration. My research assistant and PhD student, Leiha Edmonds, has designed an innovative approach to qualitative mapping involving both GPS-enabled and sketch mapping. Our partners have other more immediate data needs, but they trust us when we explain that this research will reveal new insights into complex care and identify new areas of focus. Our young participants enjoy the research because geographic methods are fun, and they think it is important to raise awareness of what they do for their families. They also get a gift card and a certificate, and we provide a sentence they can use in job interviews or on a CV to explain their role in the research. This is in addition to feedback events for caregiving families, non-profit networks, and policy makers.

The outputs of my collaborations with government and institutional leaders are varied and have local and national impacts. I’ve worked with colleagues at the University of North Carolina at Chapel Hill to survey existing students and understand the kinds of challenges that they face as caregivers and will use this work to inform our support for students. Dr. Emma Armstrong-Carter, a former undergraduate student of mine and now faculty at Tufts University, has led on a collaboration with the Rhode Island Department of Education (RIDE) with the American Association of Caregiving Youth to analyse data on caregiving by students. Rhode Island has subsequently approved a new curriculum for all schools to support caregiving youth, and we are collaboratively designing the next stage of support and research to help schools prepare for the new requirement.

It can be challenging to financially sustain deeply collaborative work from inside a regular academic department. Funding agencies like the National Science Foundation and UK research councils allow purchasing of gift cards for youth participants and families, and they approve appropriate payment for non-profits that assist with things like recruitment of research subjects, or logistical support for community events. However, many US researcher-practitioner partnership schemes that are ideal for collaborative work have been discontinued in recent years. As an employed academic, I can justify using my time on unfunded collaboration, but I can’t ask the same from a PhD student or student research assistant. Costs related to collaboration sometimes require me to piece together multiple small grants from university centres, which can be time-consuming and uncertain, and it means that we always have to do more with less.

 

What do I wish I would have known when I started this work? Here are a few ideas:

• A young carer in Glasgow once told me that she cared for her family all night, and then went to school all day, and so the time we spent together had to be fun. Consider how to build joy through play and joy into your research and your collaborations to strengthen your relationships. It is a different kind of important, ‘productive’ activity, and it should be valued as such.

• Sometimes researchers have consequential deadlines, including employment and promotion concerns. Not all scholars can wait for long-term relationships to yield research outputs. Carefully plan for how you will publish excellent work while alleviating pressure on the timeline for your collaborative relationships. If you can’t envision a viable plan, consider bringing in another researcher who can help you meet your obligations to yourself and your collaborators.

• Things can get messy in collaborative research. Make sure you are comfortable with the loss of control that comes with deep collaboration…

• …however, don’t conflate messiness with irresponsibility. Can you help create new structures or networks to solidify loose-knit relationships, or design a modest, low-stakes project that can help you improve your own capacity or those of your partners? You likely have a lot of valuable skills that are needed. Deliver on your promises. Do a good job.

 

How to cite

Olson, E. (2023) Working with young carers. Working with voluntary and community groups. Royal Geographical Society (with IBG) Guide. Available at: https://doi.org/10.55203/YJJL2822