ABSTRACT
Advances in genetics have meant that the genetic services are now accessed by increasing numbers of patients. One way of dealing with the pressure on services without jeopardising patient care is the inclusion of nonmedical genetic counsellors and genetic nurses in the genetic services team. However, a cohesive approach to the profession has been lacking in Europe, and an educational programme and registration system for European practitioners is required. The aim of this study was to ascertain the type of work undertaken by genetic nurses and counsellors in Europe and the context in which they practised. We used a cross-sectional survey design to collect data from 213 practitioners, either genetic nurses or genetic counsellors, from 18 European countries. Respondents completed the survey online, and data were analysed using descriptive statistics and cross-tabulations. The majority were involved in undertaking the initial contact with the patient (89.9 %) and explaining the genetic test to the patient (91.5 %), while 74 % ordered tests and 91.4 % obtained informed consent for such tests. Psychological support before and after genetic testing was provided by 80.2 % of respondents, and 82.1 % reported regularly managing cases autonomously. While the genetic counselling profession is barely established in some countries, counsellors are able to contribute substantially to patient care as part of the multi-disciplinary team. Further efforts to establish the profession at the European level through a registration process will enhance the confidence in this new group of allied health professionals.
ABSTRACT
Quality genetic healthcare services should be available throughout Europe. However, due to enhanced diagnostic and genetic testing options, the pressure on genetic counselling services has increased. It has been shown in many countries that appropriately trained genetic counsellors and genetic nurses can offer clinical care for patients seeking information or testing for a wide range of genetic conditions. The European Society of Human Genetics is setting up a system of accreditation for genetic counsellors, to ensure safe practice, however there has been little information about the practice and education of non-medical genetic counsellors in Europe. To collect baseline data, we approached key informants (leaders in national genetics organisations or experienced practitioners) to complete an online survey, reporting on the situation in their own country. Twenty-nine practitioners responded, providing data from 18 countries. The findings indicate huge variation in genetic counsellor numbers, roles, and education across Europe. For example, in UK and The Netherlands, there are more than four counsellors per million population, while in Germany, Hungary, Turkey, and Czech Republic, there are no non-medical counsellors. There are specific educational programmes for genetic counsellors in seven countries, but only France has a specific governing legal framework for genetic counsellors. In the post-genomic era, with added pressure on health systems due to increases in availability and use of genetic testing, these disparities are likely to result in inequalities in service provided to European citizens. This study underpins the need for a coherent European approach to accreditation of genetic counsellors.
ABSTRACT
OBJECTIVES: To explore and examine students' abilities to communicate with patients during a general practice course in the final year of the curriculum and to analyse and consider this experience in relation to earlier consultation training. SETTING: General practice courses in the undergraduate curriculum. DESIGN: Qualitative data analysis was used. A special focus-group interview of experienced supervisors was performed and analysed (editing analysis). Credibility of data was tested at local seminars and conferences. Authors' experiences of observing student consultations over many years were also used. RESULTS: A main theme, 'open invitation', emerged based on categories 'initially attentive' and 'listening attitude'. In contrast, the second main theme was 'instrumental strategy', based on the following categories: 'one-sided collection of medical facts' and 'relationship-building lost'. The students also had difficulties in devoting attention to patients' life experiences. An hourglass metaphor of students' and young physicians' progression of communication strategies is presented. The narrow part of the hourglass corresponds to an instrumental strategy at the end of undergraduate clinical education. CONCLUSIONS: An instrumental strategy may be a stage in student's consultation learning progression that interferes with communication training. A question is raised: is training of a patient-centred approach throughout the clinical curriculum needed for optimal development of consultation skills? Further research is needed to test this hypothesis.
