title: Patient empowerment in clinical genetics services.
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.
authors.affiliation: Nowgen, Manchester, UK. Marion.McAllister@manchester.ac.uk
authors.forename: Marion
authors.initials: M
authors.lastname: McAllister
authors.forename: Katherine
authors.initials: K
authors.lastname: Payne
authors.forename: Rhona
authors.initials: R
authors.lastname: Macleod
authors.forename: Stuart
authors.initials: S
authors.lastname: Nicholls
authors.lastname: Dian Donnai
authors.forename: Linda
authors.initials: L
authors.lastname: Davies
mesh_terms: D000223:Adaptation, Psychological; D003657:Decision Making; D005190:Family / Q000523:psychology; D017144:Focus Groups; D005817:Genetic Counseling / Q000523:psychology*; D020022:Genetic Predisposition to Disease / Q000523:psychology; D005820:Genetic Testing / Q000523:psychology*; D006801:Humans; D007389:Internal-External Control; D007406:Interview, Psychological; D009042:Motivation; D017063:Outcome Assessment, Health Care; D010353:Patient Education as Topic; D011209:Power, Psychological; D012944:Social Support