The Lifespan Family Research Program is dedicated to the advancement of knowledge about families who have a member with a disability, with a special emphasis on how these families change over the lifespan. Our program of research currently encompasses three ongoing studies, one focused on autism, another on fragile x syndrome, and on population studies. Previous studies have been directed at other developmental disabilities, such as Down syndrome and mental retardation, severe mental illnesses, women as caregivers, and on families of color.
Families who have a member with a disability face unique challenges and have special needs. Very little research has examined the daily life of these families, their profiles of resilience and vulnerability, or the resources, supports, and services that sustain their ability to provide lifelong care to their family member with the disability. An additional focus of our work emanates from the limited understanding of how the symptoms of various disabilities change over the life course and the impacts on families of these changes in symptoms and needs. The lack of research on these issues is particularly acute with respect to life course transitions, such as the transition to adulthood or the move out of the parental home to non-family living, and with planning for the future after the parents are no longer able to be primary caregivers.
It is critical to gain an understanding of these factors in order to develop adequate social policy, service and intervention programs, and family supports. In addition, studies of these families provide an excellent opportunity to extend and sharpen basic social and behavioral science theories and hypotheses regarding stress and coping, the effects of multiple roles, life course development, and biobehavioral processes.