The role of the haemoglobinopathy nurse counsellor: an exploratory study
The haemoglobin disorders are among the most common genetically inherited conditions within the United Kingdom. Individuals who are fully affected have severely impaired health while carriers may be faced with difficult reproductive decisions although generally they are well. Policy makers agree that counselling for families at risk should be undertaken in primary care settings and since the early 1980s this service has been undertaken mainly by specialist haemoglobinopathy nurse counsellors. Despite a number of government reports and recommendations for best practice, problems with service provision continue to be highlighted. However, there is little documented information about the work undertaken by the counsellors or how they perceive their role. A descriptive study was therefore conducted to fill this gap. It took the form of a questionnaire survey undertaken with 26 counsellors. The results were analysed by content and used to develop an interview schedule which was employed to obtain more detailed information from staff in four centres. The counsellors suggested that most of their time was spent in client-centred activities and most clients were first seen antenatally. However, there were significant barriers which prevented optimal service provision. These included: problems of communication with other health professionals, obtaining laboratory results crucial to the early identification of couples at risk, late referral from general practitioners and poor facilities for administration, especially maintaining computer databases essential for record keeping. Developing and obtaining written information suitable for families was particularly time-consuming.