ALS Ice Bucket Challenge Progress
Coping with ALS can be difficult for the many children and youth of a family member living with ALS, given differences in emotional maturity and lack of age-appropriate educational and supportive resources. This is a widespread concern, as a significant number of people living with ALS report having a child who is impacted by the disease. Moreover, children are tasked with the responsibility of taking part in the physical care of a person living with ALS, yet had little to no training or support, leading to anxiety and concern in their lack of skill. In order to assist with the education and support of youths who are impacted by a loved one’s ALS diagnosis, The ALS Association collaborated with Dr. Melinda S. Kavanaugh PhD, from the University of Wisconsin, to create resources that will directly benefit this group.
Earlier this year, The ALS Association released Families and ALS: A Guide for Talking with and Supporting Children and Youths. The guide, written by Dr. Kavanaugh, was created primarily for families living with ALS, including parents, grandparents, siblings, and other family members. However, it was also created to support the many school-based and health care professionals who work with families affected by ALS. The goal of this guide is to help families start answering many of the questions that will be asked, as well as to offer support and suggestions for professionals assisting with families affected by ALS. A key theme throughout this guide is communication—how to do it, maintain it, and include it in everyday life. The guide can be found on The ALS Association’s website http://www.alsa.org/als-care/resources/publications-videos/families-and-als-resource-guide/, or in hardcopy format from the Care Services Order Portal http://portal.alsa.org/.
Over the next several months, The Association will be working with Dr. Kavanaugh to author a series of three additional resource guides, which are intended to be used by youths as support and education tools to help understand and cope with a loved one’s ALS diagnosis and disease progression. The new guides will target youths in three different age groups; young children, adolescents, and young adults; and will be developed using data from Dr. Kavanaugh’s clinical work with The ALS Association national office and chapter network.
The Association has helped fund Dr. Kavanaugh’s research into training for youths who are active participants in the day-to-day care of a family member with ALS, including the correct use of durable medical equipment (DME). The project, which has currently been piloted by two ALS Association chapters, will result in the creation of manuals that will provide guidance, skill development, and support for children and youth caregivers who provide care to their loved ones living with ALS. This project specifically addresses The ALS Association’s mission priority to provide persons with ALS and their family caregivers access to high quality, consistent and compassionate support services. By working across Association chapters, this project strengthens the ability of the chapters to provide targeted, evidence-based, and rigorously tested caregiver educational programs, which will be made available to the ALS community nationwide.
To learn more about The ALS Association’s work with Dr. Melinda Kavanaugh, listen to the recent webinar titled, “I have ALS and a Child or Youth: Now What? Bringing Children and Youths into the Conversation”.
