{"id":147559,"date":"2025-11-07T09:29:04","date_gmt":"2025-11-07T15:29:04","guid":{"rendered":"https:\/\/uwm.edu\/news\/?p=147559"},"modified":"2025-11-13T08:50:16","modified_gmt":"2025-11-13T14:50:16","slug":"uwm-researcher-supports-youth-caregivers-worldwide-through-training-and-film","status":"publish","type":"post","link":"https:\/\/uwm.edu\/news\/uwm-researcher-supports-youth-caregivers-worldwide-through-training-and-film\/","title":{"rendered":"UWM researcher supports youth caregivers worldwide through training and film"},"content":{"rendered":"<p>When someone is diagnosed with a neurological disorder like ALS or Huntington\u2019s disease, life changes immediately \u2014 and not just for them.<\/p>\n<p>Caregiving often falls to immediate family members, even if they are still children. As a clinical social worker, Melinda S. Kavanaugh saw this firsthand while working with families affected by Huntington\u2019s disease at the Washington University School of Medicine in St. Louis.<\/p>\n<p>\u201cA child was talking to me about the intricacies of disinfecting his dad\u2019s feeding tube and how he needed to be so very careful,\u201d Kavanaugh said. \u201cIt\u2019s imprinted on my brain. I\u2019ll never forget that.\u201d<\/p>\n<p>Now a professor of social work at UW-Milwaukee, Kavanaugh has spent her career conducting research and developing training and tools to help other young caregivers and their families.<\/p>\n<h2>Filling a gap for young caregivers<\/h2>\n<p>Kavanaugh already had years of experience as a social worker supporting families and young caregivers when she enrolled in UW-Madison\u2019s doctoral program to study caregiving. She threw herself into research on the issue \u2014 and found very little.<\/p>\n<p>\u201cAt the time, in the U.S., there really was one person doing any work in this area,\u201d Kavanaugh recalled.<\/p>\n<p>She spoke to many neurologists and other medical professionals who were surprised to learn that children and teens are the ones caring for their parents.<\/p>\n<p>\u201cThere is sometimes a knee-jerk reaction that there\u2019s something intrinsically wrong with a child providing care to a parent,\u201d Kavanaugh said. \u201cBut being a child or youth caregiver is not a bad thing. So many of these kids get a sense of fulfillment by participating in care. It\u2019s the continued isolation that makes it a problem.\u201d<\/p>\n<p>Her research and boots-on-the-ground clinical experiences led Kavanaugh to develop a wide range of resources for youth caregivers. Some are coloring books and graphic novels that speak to them directly. Other resources are for adults who may need to explain a complicated and stressful medical diagnosis. The materials have been translated into multiple languages to help youth caregivers and their families around the world.<\/p>\n<p>Kavanaugh also created <a href=\"https:\/\/uwm.edu\/ycare\/\">YCare<\/a>, which teaches children and teens how to provide medical care in the home safely and confidently.<\/p>\n<p>Her goal is to make youth caregivers feel supported, respected and seen. Because the federal government doesn\u2019t recognize anyone under 18 as a caregiver, children and teens don\u2019t have the same resources and support that adult caregivers receive, Kavanaugh said.<\/p>\n<p>\u201cThey just need support,\u201d she continued. \u201cThey need kids who understand it. They need peers who aren\u2019t going to make them feel weird. They need adults who will surround them with kindness.\u201d<\/p>\n<h2>Expanding reach through research and film<\/h2>\n<p>About 5.4 million children and teens provide care to family members in the United States, according to a study conducted by the National Alliance for Caregiving and AARP. The problem, as Kavanaugh sees it, is a lack of understanding of young caregivers\u2019 needs and funding to support them.<\/p>\n<p>She\u2019s working hard to change that with several major research projects. One centers on young caregivers in military connected and veteran communities. Another project focused on Latino and African American youth caring for family members with Alzheimer\u2019s disease.<\/p>\n<p>Recently, Kavanaugh partnered with Global Neuro YCare and the ALS Association to produce a short film, <a href=\"https:\/\/globalneuroycare.org\/luki-the-lights\/\">LUKi &amp; the Lights<\/a>, which tells the story of a robot filled with lightbulbs who is diagnosed with ALS. The robot\u2019s mobility slowly declines and lights go out as the disease progresses. The film has no dialogue, making it accessible in any language or geographic region. LUKi &amp; the Lights won Best Animation US Short Film at the <a href=\"http:\/\/nyafa.com\/index.php\/official-selection-2024\/\">2024 New York Animation Film Awards<\/a> and was long listed for an Oscar in 2024.<\/p>\n<p>But Kavanaugh isn\u2019t chasing accolades. What she cares most about is the human impact of her research.<\/p>\n<p>\u201cTo be able to do research outside of something you\u2019ve read in a book, in an area that you\u2019ve seen hands-on in a home, in a hospital \u2014 it gets in your soul,\u201d Kavanaugh said. \u201cAnd that\u2019s what carries you through all the years and all the work.\u201d<\/p>\n","protected":false},"excerpt":{"rendered":"<p>Melinda S. Kavanaugh develops training and tools to support the 5 million children and teens caring for ill or injured family members in the U.S.<\/p>\n","protected":false},"author":486,"featured_media":147561,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"footnotes":"","uwm_wg_additional_authors":[]},"categories":[174,175,361],"tags":[],"section":[135],"display_categories":[352,115,116],"related-coverage":[362],"uwmnews-feed":[347,155,157],"class_list":["post-147559","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-news","category-research","category-waves-stories","section-health","display_categories-top-story-tertiary","display_categories-top-story-secondary","display_categories-top-story-section","related-coverage-make-new-waves","uwmnews-feed-community-engagement-professions","uwmnews-feed-social-welfare-criminal-justice","uwmnews-feed-social-welfare"],"yoast_head":"<!-- This site is optimized with the Yoast SEO Premium plugin v27.3 (Yoast SEO v27.3) - https:\/\/yoast.com\/product\/yoast-seo-premium-wordpress\/ -->\n<title>UWM researcher supports youth caregivers nationwide<\/title>\n<meta name=\"description\" content=\"Melinda S. 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