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Journal of Health Psychology
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Patient Empowerment in Clinical Genetics Services

Marion McAllister

Nowgen, A Centre for Genetics in Healthcare, Central Manchester and Manchester Children's University Hospitals NHS Trust, & Academic Unit of Medical Genetics, The University of Manchester, Marion.McAllister{at}manchester.ac.uk

Katherine Payne

Nowgen, A Centre for Genetics in Healthcare & Academic Unit of Medical Genetics, The University of Manchester

Rhona MacLeod

Central Manchester and Manchester Children's University Hospitals NHS Trust & Academic Unit of Medical Genetics, The University of Manchester

Stuart Nicholls

Nowgen, A Centre for Genetics in Healthcare

Dian Donnai

Nowgen, A Centre for Genetics in Healthcare, Central Manchester and Manchester Children's University Hospitals NHS Trust, & Academic Unit of Medical Genetics, The University of Manchester

Linda Davies

Nowgen, A Centre for Genetics in Healthcare & Health Economics Research at Manchester, The University of Manchester

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.

Key Words: clinical genetics • empowerment • genetic counselling • perceived personal control • qualitative research

Journal of Health Psychology, Vol. 13, No. 7, 895-905 (2008)
DOI: 10.1177/1359105308095063
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