Wednesday, 17 August 2016

USA to UK: How Caring for her Mom Led to a PhD Abroad

I can't quite remember how I first met Feylyn Lewis. It might have been in caregiving groups on LinkedIn or I might have been impressed by her advocacy for young caregivers on Twitter. Either way, I decided to write to Feylyn and ask her if she would speak to me over Skype. I wanted to know more about this young PhD student from Tennessee who had moved to Birmingham, England to pursue her post-graduate studies in the area of young caregivers. Here's our conversation. I am constantly amazed by how personal experiences of caregiving can lead to academic or professional investigations with the end purpose of easing the caring path of others. Feylyn Lewis embodies all the reasons I am hopeful about the future of caregiving. 

1) Tell us about the subject of your research.

My research seeks to understand the ways a young adult's identity may have been shaped through caregiving and to learn more about how to better support young adult caregivers as they transition into adulthood. My research features 55 face to face interviews with 18-25 year old young adult caregivers across the United States, England, Wales, Scotland, and Northern Ireland.

Young adult caregivers are those individuals aged 18-25 who provide unpaid care, support, and assistance to a family member with a health condition such as a physical or learning disability, mental illness, and/or other conditions that require support (e.g. substance misuse, HIV/AIDS, dementia and Alzheimer's, and injuries sustained through military service). In the United States, there are estimated 4 million to 5.5 million young adults (aged 18-25) providing unpaid care to a family member, and in the United Kingdom, there are an estimated 230,000 18-24 year old young adult caregivers. Types of care young adult caregivers provide may include household tasks (cooking/cleaning), emotional support, personal care (showering/dressing), financial assistance and physical care (e.g., lifting or helping the family member to walk). Previous research has shown that young adult caregivers are at high risk for social isolation, poverty, depression, anxiety, and other physical health problems caused from providing care. They may also experience absentee problems at work or school, and depending on the intensity of their caring responsibilities, many young adult caregivers are unable to attend work or college at all. Historically, this group of young people have been hidden, invisible, and overlooked with regards to service care delivery and social policy advocacy. This stands in contrast to other advanced developed nations, like the United Kingdom and Australia, in which child and young adult caregivers have official governmental recognition and numerous organizations to help support their needs.

2) What led you to be interested in this topic?

Growing up in Nashville, Tennessee was filled with happy memories, but it was also challenging. My older brother and I provided care for our mother, who became physically disabled when I entered middle school. We were responsible for all of her home care, and my brother financially managed our entire household as a sophomore in college. He wasn't able to continue in college because the care for our family was so time-intensive. We didn't receive any support as young caregivers and our experience has motivated me to change the lives of children and young adults who also provide care for their families. Tennessee remains my home but I moved to England to conduct my PhD research at the University of Birmingham under the supervision of Professor Saul Becker, world-renowned expert in the field of young caregivers.

3) What have you learned so far?

Caregiving has played a crucial role in the ways young adult caregivers think about themselves and the person they are becoming. Some young adult caregivers feel restricted in their ability to move away from home or away to college, and others feel that their future life choices with regards to work, marriage, and children must be considered in light of their caregiving responsibilities. My research has shown that supportive organizations dedicated to young adult caregivers can help them navigate life choices and provide them with strong social network with other caregiving peers.

4) How do you hope young caregivers will benefit from your research?

If we have a better understanding of how the experience of providing care during young adulthood affects the ability of young people to explore their identity through work, education, and relationships, we are better positioned to help young adult caregivers into their successful transition into adulthood. In short, if we understand what they need, we can then create ways to support them.

5) If families have an opportunity to participate in a research study, what could they expect?

I strongly encourage families to participate in caregiving research whenever they have the opportunity to do so. We need to hear their experiences to facilitate true supportive change. Families may be surprised to learn that participating in a research study can be cathartic. Last year, I participated in a research interview on young caregivers and it was extremely refreshing for me to share and reflect. A research interview can be a way to open up conversation with your family as well.

6) Tell us three things you wish would change for young caregivers.

· More awareness from health care professionals, social workers, teachers, and policy-makers.

· Increasing support, so that they may experience more freedom in making life choices for themselves.

· Policy recognition on state and national levels. Young caregivers need respite care, financial support, and support for the person for whom they provide care. Policy can help!

7) Tell us three things about yourself that you only discovered when you moved to the UK.

· Moving to a new country without your family can be incredibly scary. I learned that I’m stronger and more capable than I thought!

· I’m committed. Sticking to a goal (my PhD) that involves hard work every day for four years seems daunting, but I haven’t given up.

· I love hearing the experiences of others. I’ve made friends from around the world and I’ve learned so much from them. 

Feylyn is a PhD student in Social Work at the Institute of Applied Social Studies at the University of Birmingham in England. A native of Hendersonville, Tennessee and graduate of Vanderbilt University, she is a nationally certified mental health counselor. Her doctoral research focuses on the identity development of young adult caregivers living in the United Kingdom and United States. During Feylyn’s childhood, her older brother was a caregiver for her and their mother who has a physical disability. This experience motivated Feylyn to pursue research and advocacy work for younger age caregivers; thus, she came to England from the United States in 2013 to further study under the expertise of Professor Saul Becker, world-renowned researcher on young people with caring responsibilities. While completing her doctoral research, Feylyn remains committed to raising the profile of child and young adult caregivers through blog writing, podcasts, and speaking engagements in both the United States and England. Click here to read her latest blog piece and click here to learn more about her research.

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