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FCA AWARDED NATIONAL RESEARCH GRANT
SAN FRANCISCO--Family Caregiver Alliance has been awarded a 31-month research grant by The Robert Wood Johnson Foundation. The Robert Wood Johnson Foundation, based in Princeton, N.J., is the nation's largest philanthropy devoted exclusively to health and health care.
The study will be carried out under the Foundation's national initiative called Independent Choices: Enhancing Consumer Direction for People with Disabilities. The program is designed to foster the development of consumer-directed home- and community-based services for people of all ages with chronic disabilities. FCA's proposed study was one of 13 research and demonstration projects funded nationally.
FCA's project, entitled Making Hard Choices: Respecting Both Voices, will explore choice and decision-making in everyday care for cognitively impaired adults and their family caregivers, with a focus on their perceptions, preferences and practices in home- and community-based care.
Five research questions will be addressed:
- Are cognitively impaired adults able to communicate their preferences for the care they are currently receiving or will need in the future?
- What is the decision-making process between impaired adults and their caregivers?
- How does the availability and use of information and services, as well as the quality and cost of care, facilitate and/or impede family decision-making related to the impaired adult's everyday care?
- Is there congruence between the impaired relative's preferences and the needs and practices of the family caregiver?
- When there is a lack of congruence, whose wishes prevail, and how does this influence service use patterns?
Research findings will advance knowledge on consumer choice, how families make decisions about care, and the importance of recognizing both voices (impaired adult and family caregiver) when cognitive impairment is involved.
Most important, the findings from this study will be used to advocate for progressive public policy and service development in home- and community-based care.
The research project will be directed by FCA's Lynn Friss Feinberg, M.S.W., Manager of Research and Information Programs, in collaboration with Carol Whitlatch, Ph.D., with The Benjamin Rose Institute in Cleveland, Ohio.
Today, more and more families are affected by the economic and emotional costs of providing long-term care. At the same time, people with disabilities are making strides towards greater autonomy through consumer-directed care. The FCA study will bridge these trends by recognizing and enhancing the roles of cognitively impaired adults and their families in best meeting long-term care needs.
Celebrating its 20th Anniversary this year, the San Francisco-based Family Caregiver Alliance is the lead agency in California's system of Caregiver Resource Centers.
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