Patient Empowerment in Clinical Genetics Services
- 1 October 2008
- journal article
- research article
- Published by SAGE Publications in Journal of Health Psychology
- Vol. 13 (7), 895-905
- https://doi.org/10.1177/1359105308095063
Abstract
Outcome measurement in clinical genetics is problematic because the patient benefits are difficult to measure. The aim in this qualitative grounded theory study was to develop a theoretical framework describing the patient benefits from using clinical genetics services. Seven focus groups and 19 interviews were conducted with patients, patient group representatives, and health professionals. Data analysis resulted in construction of a model of empowerment summarizing the patient benefits from using clinical genetics services. Empowerment is similar to the concept of perceived personal control (PPC), and a measure of PPC has been developed for use in evaluations of clinical genetics services. However, empowerment includes some benefits not captured by PPC related to empowerment of other at risk relatives, and future generations.Keywords
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