1. Nothing About Us Without Us: Authentic participation of service recipients in system development.
- Author
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Kaufman, Joy S., Schreier, Alayna, Graham, Susan, Marshall, Tim, and Bracey, Jeana
- Subjects
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ACTION research , *CAREGIVERS , *DECISION making , *FAMILIES , *LEADERSHIP , *MEDICAL care , *PATIENT participation , *SYSTEMS development , *ACCESS to information - Abstract
Abstract The involvement of consumers in the planning and development of health services has been encouraged and, in some cases, mandated. This involvement is viewed by many as a democratic or ethical requirement in that consumers have a right to influence services. Connecticut has been working toward the full implementation of a children's behavioral health system of care since 1997 but has lacked the mechanisms needed for family members to have their voices heard or to be full partners at decision-making tables. This paper is a case study that highlights work that has been done to 1) gather systematic feedback from families through the use of participatory research methods; 2) increase family access to data; and, 3) build the capacity of caregivers with the goal of increasing their involvement and leadership at all levels of the system of care. Highlights • The involvement of consumers in the planning and development of health services is encouraged. • Involvement of consumers is viewed by many ethical as consumers have a right to influence services they receive. • Connecticut has been working to engage family members as full partners at children's behavioral health decision-making tables. [ABSTRACT FROM AUTHOR]
- Published
- 2019
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