Many people coping with ALS live with, or care for, children or grandchildren. When confronted with a disease as difficult to navigate as ALS, many parents understandably struggle with knowing how best to support their children (or grandchildren) and accessing resources tailored to their needs. The ALS Parenting At a Challenging Time (ALS PACT) Program at Massachusetts General Hospital’s ALS Multidisciplinary Clinic has been designed to build on family strengths and help parents to support their children’s coping and resilience. With support from the ALS Finding a Cure WE CARE initiative, the Mass General ALS PACT providers will develop and promote widespread access to ALS-specific parenting resources.
At the Mass General multidisciplinary clinic, the ALS PACT Program has been collaborating with parents and grandparents to provide developmentally-attuned psycho-educational consults, focused on supporting children’s coping with all stages of an adult’s ALS. The team will now expand on this core commitment to care by developing an open-access, online library of written psycho-educational resources designed to help parents and grandparents recognize and address a range of children’s concerns related to a loved one’s ALS. These evidence-informed guidance materials will address how to support children from toddlers through young adults, across all stages of ALS. Additionally, the team will develop primers accompanying the core parent guidance materials for mental health clinicians and multidisciplinary ALS clinicians working with parents and grandparents with ALS. Materials will be made freely available in English and Spanish to patients and clinicians throughout the US and worldwide.