{"id":24034,"date":"2018-03-15T16:35:54","date_gmt":"2018-03-15T20:35:54","guid":{"rendered":"https:\/\/college.unc.edu\/?p=24034"},"modified":"2024-07-02T16:54:22","modified_gmt":"2024-07-02T16:54:22","slug":"kids-not-alright","status":"publish","type":"post","link":"https:\/\/collegearchive.unc.edu\/?p=24034","title":{"rendered":"The Kids Are Not Alright"},"content":{"rendered":"<figure id=\"attachment_24035\" aria-describedby=\"caption-attachment-24035\" style=\"width: 300px\" class=\"wp-caption alignright\"><img loading=\"lazy\" decoding=\"async\" class=\"size-medium wp-image-24035\" src=\"https:\/\/collegearchive.unc.edu\/wp-content\/uploads\/sites\/21\/2024\/07\/Capture-caregiver.jpg\" alt=\"UNC senior LauraKathryn Smith has been a youth caregiver for most of her life, as her mom has multiple sclerosis (MS) and her dad a traumatic brain injury.\" width=\"300\" height=\"202\" \/><figcaption id=\"caption-attachment-24035\" class=\"wp-caption-text\">UNC senior LauraKathryn Smith has been a youth caregiver for most of her life, as her mom has multiple sclerosis (MS) and her dad a traumatic brain injury.<\/figcaption><\/figure>\n<p><em>Even though more than 1.4 million American children under the age of 18 care for siblings or parents who have a chronic illness or disability, support for this demographic is in short supply. UNC geographer Elizabeth Olson in the College of Arts &amp; Sciences and collaborators look to other countries as models for growing youth caregiver resources in the United States.<\/em><\/p>\n<p>Bleep. Bleep. Bleep. LauraKathryn Smith\u2019s eyes shoot open. She lets them adjust to the light before shutting off the alarm. After a few minutes, she slides out of bed and heads for the rooms of her older brother and sister to wake them. Once they\u2019re up and moving, she gets dressed and heads to the kitchen, where she makes two bowls of cereal. She eats one and then brings the other into a nearby bedroom.<\/p>\n<p>\u201cWe\u2019re going to school now,\u201d she tells her mom, who\u2019s still in bed.<\/p>\n<p>\u201cOkay. Have a great day,\u201d she says. Smith pauses for a minute \u2014 then sets the cereal on the bedside table, kisses her mom, and leaves.<\/p>\n<p>Four years before Smith was born, her mother was diagnosed with multiple sclerosis (MS) \u2014 a disease of the central nervous system that disrupts the flow of information within the brain and between the brain and the body. MS symptoms vary for everyone and are often unpredictable.<\/p>\n<p>\u201cFor most of her life she\u2019s had relapsing-remitting MS, which is the most common form,\u201d Smith says. But it still leads to symptom flare-ups like double-vision, dizziness, pain down the spine, and difficulty thinking clearly.<\/p>\n<p>In response, Smith learned to be independent at an early age. She was 7 years old when she began waking her siblings for school \u2014 which they\u2019d travel to by taking a golf cart to the local Kroger before hopping on a bus for 45 minutes. \u201cWe got used to making our own meals and doing our own laundry and taking ourselves to school,\u201d she says.<\/p>\n<p>When Smith was 11, her mother was hospitalized for two weeks. Smith and her brother ended up spending one month in foster care, and then six more with their grandparents. After that, Smith moved in with her dad, who also struggles with a disability; he has a traumatic brain injury.<\/p>\n<p>\u201cAt some point it hit me,\u201d Smith says. \u201cEven though your parents are supposed to be the ones taking care of you \u2014 we think of them as superheroes who can do anything \u2014 that\u2019s not always the case. And trying to come to grips with that as a kid and young adult is very difficult.\u201d<\/p>\n<p>\u2014-<\/p>\n<p>A youth caregiver is a young person under the age of 18 who provides care for a family member with a disability, chronic illness, or another health circumstance that requires care. There are more than 1.4 million youth caregivers in the United States alone, according to a <a href=\"http:\/\/www.caregiving.org\/data\/youngcaregivers.pdf\">2005 prevalence study from the National Alliance for Caregiving<\/a>.<\/p>\n<p>But that statistic is severely outdated. That\u2019s where Elizabeth Olson comes in. As a UNC childhood and youth geographer, she has spent the last decade researching the topic of youth caregivers.<\/p>\n<p>In 2016, she began the <a href=\"http:\/\/bookendcaregivers.web.unc.edu\/\">Bookend Caregiving Project<\/a> \u2014 a network of researchers and community members dedicated to improving the well-being of youth caregivers and the older adults with complex or chronic health conditions for whom they provide care. They work with schools, medical practitioners, and caregiver organizations to understand the priorities and unrecognized needs of these families.<\/p>\n<p>At the same time, she\u2019s building <a href=\"https:\/\/www.facebook.com\/CarolinaCarers-201002097120790\/\">Carolina Student Carers<\/a>, a network for students on campus who are caregivers for siblings, parents, grandparents, children, or even multiple family members. The student-caregiver combo presents daily challenges that can undermine success and progress toward a degree. Smith, a UNC senior studying psychology and women\u2019s and gender studies, is helping Olson lead this group.<\/p>\n<p>\u201cIt\u2019s a very difficult decision to make,\u201d Smith, who continues to care for her mother as a full-time student, adds. \u201cAm I going to sacrifice my opportunities to put someone else\u2019s needs before my own?\u201d<\/p>\n<p>\u201cIf you\u2019re 17 years old and you are caregiving for your father who had a stroke, that may influence where you go to school or whether you need to just go out and get a job,\u201d Olson says. \u201cCaregiving can really shape a young person\u2019s life trajectory. And we know that it can both limit and expand kids\u2019 abilities.\u201d<\/p>\n<p><strong>A wake-up call<\/strong><\/p>\n<p>Three pairs of eyes bore into Olson and her colleague Eduardo Seraf\u00edn as they give a lesson on filmmaking to a youth group of 14- to 18-year-olds in Glasgow, Scotland, as part of a research project. The year is 2009.<\/p>\n<p>While Seraf\u00edn explains the process behind storyboarding scenes, Olson notices one participant lose her focus. Arms crossed, she stares off into the corner of the too-small room. Olson walks over to where she\u2019s seated.<\/p>\n<p>\u201cHey \u2014 are you okay? What\u2019s going on?\u201d Olson whispers.<\/p>\n<p>\u201cYou guys don\u2019t understand it,\u201d the young woman says. \u201cI was up for half the night last night because my mom was having a seizure and my sister was upset. And then I had to go to school and sit there and pretend like everything\u2019s normal. Then I came here, and you are treating it just like it\u2019s school again. I\u2019m a young carer. I can\u2019t have any more of this.\u201d<\/p>\n<p>Olson pauses for a moment \u2014 and then quickly shifts gears and rallies the group, leading them to a nearby shop and playground. She lets them mingle and take in the fresh air. They are still kids, after all.<\/p>\n<p>\u201cThat girl was just 16 years old,\u201d Olson remembers. \u201cI was really quite naive, at that time, about what young people were doing as caregivers. Some of those I worked with in Scotland were losing a lot of sleep to help out a parent. Others spent countless hours in hospitals. From then on, I began doing a lot more listening. And I learned so much from them.\u201d<\/p>\n<p><strong>Across the pond<\/strong><\/p>\n<p>For more than 20 years, the United Kingdom has recognized youth caregivers as a demographic. This means that any government organization there must ensure the protection of caregiver rights, with supports like better transportation, counseling services, and even the option to attend camp. Today, upon request, U.K. <a href=\"https:\/\/www.nhs.uk\/conditions\/social-care-and-support\/young-carers-rights\/\">social workers will visit the homes of these kids<\/a> to perform a \u201cyoung carer needs assessment\u201d to identify ways to assist the family.<\/p>\n<p>The European Union is currently pushing for more collaboration and communication with youth caregivers in regards to legislation and research.<\/p>\n<p>But the United States isn\u2019t there yet.<\/p>\n<p>After coming to UNC in 2011, Olson reached out to the Triangle J Area Agency on Aging. After spending three years working with youth caregivers overseas, she was surprised to learn that very few groups here knew about this population. In her continued search for fellow advocates, she eventually discovered the <a href=\"http:\/\/www.aacy.org\/\">American Association of Caregiving Youth<\/a>, led by Connie Siskowski \u2014 not only the organization\u2019s founder and president but a former youth caregiver, as well.<\/p>\n<p>Olson and Siskowski have since collaborated on multiple projects including the abovementioned Bookend Caregiving Project and the <a href=\"http:\/\/cyrc.web.unc.edu\/\">Caregiving Youth Research Collaborative<\/a>, a network that seeks to support advances in research and practice for youth caregiving in the United States.<\/p>\n<p>Now, the duo is in talks with other collaborators to undertake a national prevalence study, more than ten years after the first \u2014 and only \u2014 national study was conducted.<\/p>\n<p>\u201cIt\u2019s very difficult to fund, and it\u2019s very difficult to conduct,\u201d Olson points out. \u201cBut our current data is more than 10 years out of date and, during that time, we\u2019ve had some dramatic changes in our population.\u201d As the baby boomers age, for example, more and more children and young adults care for grandparents and older relatives \u2014 something called bookend caregiving. Olson believes this disproportionately affects low-income and immigrant families, in particular.<\/p>\n<p>The <a href=\"http:\/\/bookendcaregivers.web.unc.edu\/advisory-board\/\">Bookend Caregiving Strategic Advisory Board<\/a> has also been developing a paper to communicate to the state and region what bookend caregiving is. What does it mean when we have families where young people are providing care for aging adults? The collaborative effort will create a tool that helps answer this question.<\/p>\n<p><strong>Someone to talk to<\/strong><\/p>\n<p>When Olson asks adults who cared for family members during their childhood what they wish people would have done differently when they were children, the answer is always the same: \u201cI wish someone just would have asked me about it. I wish someone would have acknowledged what I did.\u201d<\/p>\n<p>That someone could have been a school guidance counselor, or a teacher, or a pediatrician. But American families don\u2019t often divulge their youth caregivers because of misinterpretation, Olson points out. \u201cThe most common question I receive is this: <em>What is the difference between youth caregiving and neglect? <\/em>And then I have to explain that not all youth caregivers are neglected. In fact, for many, the act of caregiving is an important part of the family dynamic, especially across cultures.<\/p>\n<p>\u201cWhat\u2019s really striking,\u201d Olson continues, \u201cis that, oftentimes, when you talk to young people who are caregivers, they will very quickly identify the person they care for as the center of their love. And they want to do this \u2014 to take care of this family member \u2014 in so many cases.\u201d<\/p>\n<p>Sometimes, though, the stress and disruption of caregiving becomes too much for a young person, especially if the family is already living with the pressures of poverty or social exclusion. But research and experience shows that this can be mitigated with the right kinds of support for youth caregivers and their families.<\/p>\n<p><strong>A helping hand<\/strong><\/p>\n<p>In Florida, Siskowski started the first comprehensive program in the nation to address the challenges faced by youth caregivers. The Caregiving Youth Project of Palm Beach provides resources like social workers to not only go into schools and represent these children, but to also host small gatherings where they can discuss shared issues and concerns.<\/p>\n<p>\u201cThe project also identifies the needs of families,\u201d Olson shares. \u201cIf a family is really struggling because they need a wheelchair ramp, then they will raise money for one. In the past, they\u2019ve provided crockpots to make cooking easier, and even computers so students can complete their homework without having to be at school or in a library.\u201d<\/p>\n<p>Communication with the schools these kids attend is key. The project will notify them about common challenges youth caregivers might struggle with \u2014 things like tardiness, absenteeism, exhaustion, and bullying. \u201cIf the school knows why these things are happening, they can put some very minimal interventions into place to make sure that young person feels supported.\u201d<\/p>\n<p><a href=\"https:\/\/www.ncbi.nlm.nih.gov\/pmc\/articles\/PMC3842133\/\">Recent research<\/a> shows that, when provided positive coping mechanisms, youth caregivers grow to become more compassionate human beings.<\/p>\n<p>\u201cIf we can provide them with the opportunities to flourish and remove barriers to things like education, then we know they can develop tremendous empathy,\u201d Olson says. \u201cSo they go into the world having grown from these experiences. They become people we can all learn from.\u201d<\/p>\n<p><strong>Taking action<\/strong><\/p>\n<p>While youth caregivers receive little to no recognition across the nation, a broader, more familiar group called <em>family<\/em> caregivers does, largely because of their numbers \u2014 there are more than 40 million in the United States. For years, AARP has worked with more than 60 aging and disability organizations to rally support for this demographic.<\/p>\n<p>In January, these groups applauded the passing of the <a href=\"https:\/\/www.congress.gov\/bill\/115th-congress\/house-bill\/3759\">Raise Family Caregivers Act<\/a>, which, if made law, will create an advisory committee for articulating future family caregiving actions in the United States. Through the Department of Health and Human Services, it will develop, maintain, and update a national Family Caregiving Strategy \u2014 one that <em>must <\/em>include youth caregivers, Olson stresses.<\/p>\n<p>\u201cI hope that will <em>finally<\/em> get the message across that more and more young people are providing care,\u201d she says. And with most baby boomers already in retirement, the United States literally does not have enough people \u2014 paid, volunteer, or family \u2014 to provide care.<\/p>\n<p>To further that message, Olson continually speaks at events across the region. Just this month, she, Siskowski, and collaborators from local government agencies participated in a panel discussion at the North Carolina Association on Aging State Aging Conference. \u201cThe exciting thing is that, in just one year, we\u2019ve transitioned from me as a researcher caring desperately about this situation to a whole network of people across the state who are stepping up,\u201d she says.<\/p>\n<p>That\u2019s why Smith plans to, ultimately, become a social worker.<\/p>\n<p>\u201cI think I have a lot to add to the conversation because I have my own unique experience with my parents,\u201d she says. \u201cA lot of young caregivers don\u2019t have anyone to talk to about this stuff, and it would have been so nice if I could have talked to <em>anybody <\/em>about what it\u2019s like. So I\u2019ve decided that I really want to work with nonprofits \u2014 with the people who struggle to get help.\u201d<\/p>\n<p><em>Story by Alyssa LaFaro, Endeavors magazine<\/em><\/p>\n","protected":false},"excerpt":{"rendered":"<p>Even though more than 1.4 million American children under the age of 18 care for siblings or parents who have a chronic illness or disability, support for this demographic is in short supply. UNC geographer Elizabeth Olson and collaborators look to other countries as models for growing youth caregiver resources in the United States.<\/p>\n","protected":false},"author":4,"featured_media":24035,"comment_status":"closed","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"_monsterinsights_skip_tracking":false,"_monsterinsights_sitenote_active":false,"_monsterinsights_sitenote_note":"","_monsterinsights_sitenote_category":0,"site-sidebar-layout":"default","site-content-layout":"","ast-site-content-layout":"default","site-content-style":"default","site-sidebar-style":"default","ast-global-header-display":"","ast-banner-title-visibility":"","ast-main-header-display":"","ast-hfb-above-header-display":"","ast-hfb-below-header-display":"","ast-hfb-mobile-header-display":"","site-post-title":"","ast-breadcrumbs-content":"","ast-featured-img":"","footer-sml-layout":"","ast-disable-related-posts":"","theme-transparent-header-meta":"","adv-header-id-meta":"","stick-header-meta":"","header-above-stick-meta":"","header-main-stick-meta":"","header-below-stick-meta":"","astra-migrate-meta-layouts":"default","ast-page-background-enabled":"default","ast-page-background-meta":{"desktop":{"background-color":"var(--ast-global-color-4)","background-image":"","background-repeat":"repeat","background-position":"center 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