Why Study Children and Youth as Caregivers?

ALS is a disease of the family – where each family member helps and supports the loved one with ALS. Providing care to a loved one can be complicated, so understanding caregiving experience and support needs is critical for the well-being of both caregivers and the person with ALS (PALs). However, knowledge of ALS caregivers is currently limited to adult caregivers, with almost no acknowledgement of the role children and youth play in caregiving for a family member with ALS, despite the possibility that they may provide extensive care.

State and national studies and programs support caregiving adults, but almost uniformly begin services at the age of 18, effectively eliminating any support, or acknowledgement of a child or youth in the role of caregiver.

With no national data on the number of families who rely on young carers in ALS, it is difficult to develop appropriate support services and programs – targeted to youth in the home.

So, identifying young caregivers, why families rely on young carers to assist in caregiving, and assessing their experience will provide much needed information about creating support programs and services for youth and their families.  It is hoped that a better understanding of the caregiving experience will have a significant impact on a PALS and their family’s quality of life.

Want to Learn More? Connect with Dr. Kavanaugh

Email: kavanaug@uwm.edu

In the News:

Dr. Melinda Kavanaugh, Helen Bader School of Social Welfare faculty member and CATR Scientist, was interviewed in July on Wisconsin Public Radio regarding the role that children sometimes play as caregivers for sick and disabled adults and elderly family members.

Listen to the interview here: http://www.wpr.org/how-recognize-and-support-children-who-act-caregivers