Patients' perceptions of what makes genetic counselling effective: an interpretative phenomenological analysis

Abstract

Little is known about what makes for effective genetic counselling. Helping counselees adjust to their genetic situation is highlighted as a goal in most definitions of genetic counselling, but the processes involved in this are less clear. The current investigation focused on counselees' perceptions of their genetic consultation as a possible influence on adjustment. Participants were all attending a Regional Genetics Clinic in the UK for the first time and were being seen for a variety of reasons. Transcripts of the interviews were analysed using interpretative phenomenological analysis. Being seen by an 'expert' was seen as a positive aspect of attending the genetics clinic and one that was associated with receiving full information. The perception that either they, or the doctor, were able actively to do something about their situation, helped to relieve feelings of vulnerability. The implications of these findings are discussed in relation to the way genetic counselling is conducted.