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April 07, 2020; 94 (14) Article

US data on children and youth caregivers in amyotrophic lateral sclerosis

View ORCID ProfileMelinda S. Kavanaugh, Chi C. Cho, Megan Howard, View ORCID ProfileDominic Fee, View ORCID ProfilePaul E. Barkhaus
First published March 18, 2020, DOI: https://doi.org/10.1212/WNL.0000000000009217
Melinda S. Kavanaugh
From Social Work (M.S.K., M.H.), Helen Bader School of Social Welfare, College of Health Science (C.C.C.), and Center for Aging and Translational Research (C.C.C.), University of Wisconsin–Milwaukee; University of Wisconsin–Milwaukee (M.H.); and Departments of Neurology (D.F., P.E.B.) and Physical Medicine & Rehabilitation (P.E.B.), ALS Multidisciplinary Clinic (D.F., P.E.B.), and Neuromuscular and Autonomics Program (D.F., P.E.B.), Medical College of Wisconsin, Milwaukee.
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Chi C. Cho
From Social Work (M.S.K., M.H.), Helen Bader School of Social Welfare, College of Health Science (C.C.C.), and Center for Aging and Translational Research (C.C.C.), University of Wisconsin–Milwaukee; University of Wisconsin–Milwaukee (M.H.); and Departments of Neurology (D.F., P.E.B.) and Physical Medicine & Rehabilitation (P.E.B.), ALS Multidisciplinary Clinic (D.F., P.E.B.), and Neuromuscular and Autonomics Program (D.F., P.E.B.), Medical College of Wisconsin, Milwaukee.
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Megan Howard
From Social Work (M.S.K., M.H.), Helen Bader School of Social Welfare, College of Health Science (C.C.C.), and Center for Aging and Translational Research (C.C.C.), University of Wisconsin–Milwaukee; University of Wisconsin–Milwaukee (M.H.); and Departments of Neurology (D.F., P.E.B.) and Physical Medicine & Rehabilitation (P.E.B.), ALS Multidisciplinary Clinic (D.F., P.E.B.), and Neuromuscular and Autonomics Program (D.F., P.E.B.), Medical College of Wisconsin, Milwaukee.
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Dominic Fee
From Social Work (M.S.K., M.H.), Helen Bader School of Social Welfare, College of Health Science (C.C.C.), and Center for Aging and Translational Research (C.C.C.), University of Wisconsin–Milwaukee; University of Wisconsin–Milwaukee (M.H.); and Departments of Neurology (D.F., P.E.B.) and Physical Medicine & Rehabilitation (P.E.B.), ALS Multidisciplinary Clinic (D.F., P.E.B.), and Neuromuscular and Autonomics Program (D.F., P.E.B.), Medical College of Wisconsin, Milwaukee.
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Paul E. Barkhaus
From Social Work (M.S.K., M.H.), Helen Bader School of Social Welfare, College of Health Science (C.C.C.), and Center for Aging and Translational Research (C.C.C.), University of Wisconsin–Milwaukee; University of Wisconsin–Milwaukee (M.H.); and Departments of Neurology (D.F., P.E.B.) and Physical Medicine & Rehabilitation (P.E.B.), ALS Multidisciplinary Clinic (D.F., P.E.B.), and Neuromuscular and Autonomics Program (D.F., P.E.B.), Medical College of Wisconsin, Milwaukee.
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US data on children and youth caregivers in amyotrophic lateral sclerosis
Melinda S. Kavanaugh, Chi C. Cho, Megan Howard, Dominic Fee, Paul E. Barkhaus
Neurology Apr 2020, 94 (14) e1452-e1459; DOI: 10.1212/WNL.0000000000009217

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Abstract

Objective An estimated 1.4 million young caregivers (<19 years of age) in the United States provide care to ill family members yet remain hidden from state and national caregiving programs and services, including amyotrophic lateral sclerosis (ALS) caregiving services. Given the intensive care needs and acuity of ALS, appreciation of the young caregiver experience within the family context may have a significant impact on patient and family quality of life. This article seeks to identify family and youth caregiver characteristics and perceptions of care through interviews with 38 youth caregivers and their families with ALS.

Methods Online adult surveys and follow-up youth interviews were conducted with families with ALS across the United States in this cross-sectional study. Participants were accessed through chapters of the ALS Association. Both thematic content analysis and descriptive statistics were used.

Results Youth caregivers (n = 38) ranged in age from 8 to 18 years and spent an average of 5 h/d providing care for an average of 12 tasks. Persons with ALS relied on youth primarily due to cost and identified complex feelings about relying on youth caregivers, including feeling like a failure, guilty, but proud.

Conclusion Youth are intricately involved in all areas of caregiving in ALS. They are isolated and have little training or guidance in care, yet they are able to identify ways to manage their care burden. Results provide clear implications for health care professionals in designing best care and support practices for persons with ALS and their young caregivers.

Glossary

ALS=
amyotrophic lateral sclerosis

Footnotes

  • Go to Neurology.org/N for full disclosures. Funding information and disclosures deemed relevant by the authors, if any, are provided at the end of the article.

  • Editorial, page 601

  • Received May 15, 2019.
  • Accepted in final form November 7, 2019.
  • © 2020 American Academy of Neurology
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