The purpose of this multisite exploratory research study involving focus groups of consumers and service providers was to generate stakeholder input for a statewide strategic plan for genetic services in the southwestern region of the United States. This article describes the qualitative methods by which the data were collected and summarizes major themes in participants’ perceptions about genetic services. It also describes processes related to obtaining genetic services and characteristics of an ideal service delivery system for children affected by genetic disorders and the families that care for them. Implications for practice and policy are also reviewed.
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ACKNOWLEDGMENTS
The authors would like to acknowledge Carina Araiza, M.A., Victor Gonzalez, M.A., Cathy Heyman, M.A., and Lorena Torres, M.S.W. for their work as research assistants on this research project.
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Hernandez, V.R., Selber, K. & Tijerina, M.S. Visioning Family-Centered Care in Genetics: What Parents and Providers Have to Say. J Genet Counsel 15, 349–360 (2006). https://doi.org/10.1007/s10897-006-9032-9
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DOI: https://doi.org/10.1007/s10897-006-9032-9
KEY WORDS:
- family-centered services
- family-centered care
- family-centered service planning
- genetic services
- service barriers
- psychological adjustment issues
- unmet service needs
- family educational/informational issues
- resource issues
- genetic services to families
- focus group research
- qualitative research
- exploratory study
- current genetic services
- future genetic services
- service provider perspectives
- family perspectives
- cultural and linguistic barriers
- genetic care system