The ALS Association

ALS Ice Bucket Challenge Progress

New Study Will Look at the Youth Caregiving Experience

May 12, 2015

The ALS Association is pleased to announce funding as a part of its Clinical Management Research Program, funding for a new study of young people who care for someone with ALS. The results of the study will be used to better understand the needs of youth caregivers and to design support services to address those needs.

While the proportion of families with a teen or child caring for a person with ALS is unknown, it is clear that many ALS families include youth who may assume caregiver roles. The new study, led by Melinda Kavanaugh, Ph.D., Assistant Professor of Social Welfare at the University of Wisconsin in Milwaukee, will collect data on ALS families nationwide and conduct interviews with youth caregivers to better understand their experiences.

“With no national data on the number of families who rely on young carers in ALS, it is difficult to develop appropriate and targeted support services and programs,” Dr. Kavanaugh said. “Thus, identifying why families rely on young carers and assessing their experience will not only provide relevant data for the development of support programs and services, but also lay the groundwork for a longitudinal understanding of how caregiving influences the lives of young carers.” A better understanding of these issues will also identify areas for improvement in the quality of life for the family as a whole.

“This important study will help The ALS Association better meet the needs of ALS families,” said Kimberly Harding-Maginnis., Chief Care Services Officer. “It is a recognition that the entire family, including its younger members are affected by the disease, and may benefit from the services The ALS Association can offer.”

Read the press release.

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