
- kavanaug@uwm.edu
- 414-229-4414
- Enderis Hall 1053
Melinda S. Kavanaugh, PhD, LCSW
- Professor, Social Work
Dr. Melinda S. Kavanaugh holds a PhD, MSW and an LCSW with clinical training in families living with and providing care for neurological disorders such as Huntington’s disease, Amyotrophic lateral sclerosis (ALS), and Alzheimer’s disease. Based on her clinical experience, Dr. Kavanaugh’s translational research focuses on an isolated population of caregivers — children and teens, youth caregivers/young carers.
Dr. Kavanaugh collaborates with partners across the United States on applied translational research addressing the experience of and impact of caregiving in young carers including: (1) NIH R21 award to conduct community-based research with Latino and African American young carers in dealing with Alzheimer’s disease; (2) Research identifying the impact of care on sleep and well-being in young carers, with the University of California-Merced, Medical College of Wisconsin and the ALS Association; (3) Developing military-connected and veteran young carer programming with the Elizabeth Dole Foundation and Wounded Warrior project, and; (4) Adapting the YCare program, skills, education and support program for young carers, to Autism, spinal cord injury, traumatic brain injury and PTSD.
Globally, Dr. Kavanaugh works with the University of Witwatersrand, Stellenbosch University, Motor Neuron Disease Association of South Africa (MNDA), Quebec ALS Society, and University of Utrecht in the Netherlands to conduct research and translation of materials, focusing on addressing cultural needs, access and resources across young carer populations. Dr. Kavanaugh co-produced the animated short film, "LUKi and the Lights," about a robot who develops ALS, and is cared for by their friends. Using no language, LUKi helps children and youth around the world understand ALS in an easily accessible way.
Education:
- Ph.D., Social Welfare, University of Wisconsin-Madison
- MSW, The Brown School of Social Work, Washington University in St. Louis
- BFA, Boston University
Appointments:
- Visiting Professor, School of Human and Community Development, Social Work, University of The Witwatersrand, Johannesburg, South Africa
- Research Fellow, Department of Social Work, Stellenbosch University, Stellenbosch, South Africa
Professional Interests:
- Young carers/caregiving youth
- Caregiving education skills and support
- Impact of chronic illness on the family
- Interprofessional education
- Social work and health care
Professional Affiliations:
- Global Neuro YCare
- International Alliance of ALS/MND Associations
- Hidden Helper Coalition
- Caregiving Youth Research Collaborative
- National Alliance for Caregiving
Recent Funding:
- 2025. Principal Investigator (PI). YCare: Supporting Young Caregivers in ALS Families. Advancing a Healthier Wisconsin (AHW) Pilot Award.
- 2024-2025. Principal Investigator (PI). Identifying Young carers in Military connected and Veteran communities. Funder: Elizabeth Dole Foundation/Wounded Warrior Project. Amount: $175,000.00.
- 2022-2026. Academic Partner/Study Evaluator. The Latino Dementia Health Regional Consortium. Funder: Wisconsin Partnership Program/University of Wisconsin-Madison. Amount: PI – The United Community Center $1,000,000.00. Kavanaugh: $152,311.00.
- 2019-2021. PrincipaI Investigator (PI). Clinical research award, National Institutes for Health, Loan Repayment Program (LRP). Eunice Shriver Institute for Child Health and Development (NICHD).
- 2018-2022. Redesign of the Psychiatric Crisis Service System of Care (SOC) for Youth and Young Adults in Milwaukee County. Funder: The Substance Abuse and Mental Health Services Administration.
- 2018-2020. Principal Investigator (PI). Alzheimer’s care management in minority groups: Identifying warning signs and crisis points in transitions from informal to formal care management in African American and Latino populations. Funder: National Institutes for Health, National Institute on Aging. R21 AG061307-01. Amount: $421,380.00.
- 2018-2020. Study Evaluator. Fortaleciendo Puentes: A Community-Based Continuum of Dementia Capable Care for Latinos. Funder: Administration on Community Living. Amount: 985,00.00, PI – The United Community Center. UWM - $91,360.00.
- 2018-2020. Principal Investigator (PI). YCare South Africa: Building community based ALS/MND caregiver interventions in South Africa. The ALS Association. Amount: $200,000.00.
- 2016. Principal Investigator (PI). MND caregiving in South Africa: Pilot assessment of family and youth caregivers. Funding to conduct research in SA around young caregivers and ALS. Funders: UWM Center for International Research. Amount: $7,800.00; International ALS/MND Alliance. Amount: $1,500.00.
Media Coverage:
- For Young Adults, Caregiving Isn't Just Hard. It Can Shape You for Life NPR (Dec. 23, 2024)
- Helping healthcare providers break the news about incurable illnesses UWM Report (Jan. 20, 2023)
- Young Caregivers 'Exist in the Shadows," Offer Crucial Help AP News (May 31, 2022)
- Role Reversal: Covid Increases the Ranks of Child Caregivers Kaiser Health Network (March 17, 2021)
- Keynote speaker, Netherlands ALS Congress: Children with ALS (Oct. 8, 2020)
- UWM Partners on Project to Prevent Dementia-Related Crises Milwaukee Community Journal (April 25, 2019)
- Child Caregivers Find Ally, Author in UWM Researcher UWM Report (Nov. 13, 2018)
- When a parent is in need, every day is Mother's Day Milwaukee Journal Sentinel (May 12, 2017)
- How to Recognize and Support Children Who Act as Caregivers Wisconsin Public Radio (July 11, 2016)
- Minnesota's Invisible Caregivers: A Growing Army of Children Take Care of Family Members in Need Minneapolis Star Tribune (June 25, 2016)
Recent Publications:
- Kavanaugh, MS. (2024). Supporting young carers across neurological disorders. The Lancet Neurology, Volume 23, Issue 11, 1082. https://www.thelancet.com/journals/laneur/issue/vol23no11/PIIS1474-4422(24)X0011-3
- O’Connell, C., Kavanaugh, M. S., Cummings, C., & Genge, A. (2024). How to break the news in amyotrophic lateral sclerosis/motor neuron disease: practical guidelines from experts. Amyotrophic Lateral Sclerosis and Frontotemporal Degeneration, 1–10. https://doi.org/10.1080/21678421.2024.2397517
- Kalvesmaki, A. F., Miller, K. E., Armstrong-Carter, E., Lewis, F., Shih, R. A., Olson, E., & Kavanaugh, M. S. (2024). The challenge of identifying young carers in the US: how state laws put families at risk for separation. International Journal of Care and Caring (published online ahead of print 2024). from https://doi.org/10.1332/23978821Y2024D000000082
- Sommers-Spijkerman, M., Kavanaugh, M. S., Kruitwagen-Van Reenen, E., Zwarts-Engelbert, A., Visser-Meily, J. M. A., & Beelen, A (2023). "What, how and when do families communicate about ALS? A qualitative exploration of parents' and children's perceptions" Amyotrophic Lateral Sclerosis and Frontotemporal Degeneration. https://doi.org/10.1080/21678421.2023.2290738
- Johnson, K., Kavanaugh, MS., Zerpa, V., Perez, S., and Castro.A (2023). “It's Put a Lot of Responsibility on Me to Make Sure That She's Being Taken Care of”: Latino and African American Young Carers of Family with Dementia during the COVID-19 Pandemic. International Journal or Health and Society. DOI: https://doi.org/10.18848/2156-8960/CGP/v13i02/93-109
- Hendricks, B.A., Bakitas, M.A., Odom, J.N., Kavanaugh, MS. (2023). “Man, This Isn’t Easy”: Exploring the Manifestation of Parentification Among Young Carers of a Parent with Huntington’s Disease. Child Youth Care Forum . https://doi.org/10.1007/s10566-023-09775-4
- Njelesani J, Kavanaugh MS, Hunleth J. (2023) Adapting an intervention to support young caregivers of cancer survivors: A study protocol. PLoS One, 18(4):e0284896. doi:10.1371/journal.pone.0284896.
- Sommers-Spijkerman, M., Kavanaugh, M. S., Kruitwagen-Van Reenen, E., Zwarts-Engelbert, A., Visser-Meily, J. M. A., & Beelen, A. (2023). Stigma experienced by ALS/PMA patients and their caregivers: a mixed-methods study. Amyotrophic lateral sclerosis & frontotemporal degeneration, 24(3-4), 327–338. https://doi.org/10.1080/21678421.2022.2161911
- Sommers-Spijkerman, M., Rave, N., Kruitwagen-van Reenen, E. Kavanaugh, MS and Beelan, A. (2022). Parental and child adjustment to amyotrophic lateral sclerosis: transformations, struggles and needs. BMC Psychol 10, 72. https://doi.org/10.1186/s40359-022-00780-1
- Kavanaugh, MS., Johnson, KT., Zawadski, M. (2021). Variations and patterns in sleep: A feasibility study of young carers in families with ALS. Journal of Clinical Medicine 2021, 10, x. https://doi.org/10.3390/xxxxx
- Kavanaugh, MS., Stamatopoulos, V (2021). Young Carers, The Overlooked Caregiving Population: Introduction to a Special Issue. Child and Adolescent Social Work Journal. https://doi.org/10.1007/s10560-021-00797
- Hendricks, B.A., Kavanaugh, M.S. & Bakitas, M.A. (2021). How far have we come? An updated scoping review of young carers in the U.S. Child and Adolescent Social Work Journal. https://doi.org/10.1007/s10560-021-00783-8
- Kavanaugh, MS., Henning, F., and Mochan, A. (2020). Young Carers and ALS/MND: Exploratory Data from Families in South Africa. Vulnerable Children and Youth /doi.org/10.1080/17450128.2020.1837409
- Kavanaugh, MS., Cho, Y., Banker-Horner, L., Barkhaus, PB. (2020). Skill, confidence, and support: Conceptual elements of a child/youth caregiver training program in ALS (YCare). Neurodegenerative Disease Management Aug;10(4):231-241
- Kavanaugh, MS., Cho, C., Howard, M., Fee., D and Barkhaus, P. (2020). U.S. Data on Children and youth caregivers in Amyotrophic Lateral Sclerosis (ALS). Neurology, 7;94(14):e1452-e1459
- Kavanaugh, MS., Cho, C., and Howard, M. (2019). “I just learned by observation and trial and error”: Exploration of young caregiver training and knowledge in families living with rare Neurological disorders. Child and Youth Care Forum, 48(4), 479-492.