RESUMO
There is growing understanding that the consumer's voice in research needs to be stronger. Translational research studies need consumer inclusion in order to be effectively implemented. This narrative article provides the perspective of a Veteran with spinal cord injury (SCI) who is an active member of several study teams and serves as a Consumer Advocate, providing the voice of the person with SCI. Factors that drive people to develop new research ideas are considered. Consumer involvement offers helpful insight into project outcomes that are valuable to the end-user. It is also recognized that data can be interpreted in several different ways depending on the observer. Including the consumer in a research project enables another interpretation, creating a more complete evaluation. Participating in health research is becoming a new standard for persons with many different illnesses and diseases. Greater things are accomplished by physicians, healthcare scientists, engineers, and healthcare consumers interacting together to increase both the quality of research projects and the quality of life for everyone involved, especially the person with the disorder. There will be more acceptance of ideas or projects when consumers are involved from the early steps and learn how the process works from beginning to end.
Assuntos
Médicos , Qualidade de Vida , Participação da Comunidade , Humanos , Projetos de PesquisaRESUMO
The social network and social support needs of people following traumatic brain injury (TBI) are considerable and related to both health outcomes and community integration. We review what is known of the structure of social networks following TBI and explore the relationship of these networks to social support and health. Social network interventions in TBI are described and discussed. Empirically based suggestions are given for the development of interventions based on culturally sensitive programmes which develop social networks and support in a naturalistic manner.
