Patient empowerment in clinical genetics services

McAllister, Marion, Payne, Katherine, MacLeod, Rhona, Nicholls, Stuart, Donnai, Dian and Davies, Linda 2008. Patient empowerment in clinical genetics services. Journal of Health Psychology 13 (7) , pp. 895-905. 10.1177/1359105308095063

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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.

Item Type:	Article
Date Type:	Publication
Status:	Published
Schools:	Medicine
Subjects:	Q Science > QH Natural history > QH426 Genetics
Uncontrolled Keywords:	clinical genetics, empowerment, genetic counselling, perceived personal control, qualitative research
Publisher:	SAGE Publications
ISSN:	1359-1053
Last Modified:	04 Jun 2017 03:51
URI:	https://orca.cardiff.ac.uk/id/eprint/27892

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