Last updated March 22, 2016  

Completed Studies

Our past research also studied at families who have a member with special needs. Populations studied include developmental disability such as Down syndrome and mental retardation; mental illness such as schizophrenia; or a disability due to aging or an illness. We studied the lives of these families, their profiles of resilience and vulnerability, community resources, supports, and services they receive that sustain their ability to provide lifelong care to their family member with the disability.

 Starting in 1988, we studied 461 families, all of whom provided in-home care to an adult son or daughter with mental retardation when the study began. These parents faced an atypical and unstudied dual challenge: the continuing caregiving responsibility for an adult child with a disability and the personal challenge of adjusting to the manifestations and consequences of their own aging. The study addressed these issues with the largest existing sample in the U.S. of older mothers and fathers (average age = 66 years in 1988) and their adult sons and daughters with retardation (average age = 35 years in 1988), about one-third of whom have Down syndrome.

 Two research studies on mental illness have been conducted since 1988. Their purpose was to understand more about families who have been coping with the mental illness for many years, to understand the impact on the overall well-being of the family, and to investigate what the future holds for the aging parents as well as person with mental illness.

The first study which ran in the early 1990's included 108 aging mothers who had a son or daughter with schizophrenia, an affective disorder such as bipolar, or major depression. The second study, was a 5 year longitudinal study running from January 2000 - February 2006. It included 260 aging mothers, who had a son or daughter with schizophrenia or schizoaffective disorder. Of theses 260 families, 133 fathers, and 162 son/daughters with mental illness also participated in the study.

 The purpose of the study was primarily on how women respond to the challenges of caregiving for a family member who was either a spouse or an aging parent, how they felt about the help they provided, and how they were affected by that responsibility. A total of 538 women, 334 caregivers and 204 women who were not caregivers were studied.



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