Supporting parents who have a child referred for genetic investigation: the contribution of health visitors

Aim. This paper reports a study of the views of health visitors in relation to their role in supporting parents of children referred for genetic investigations. Background. An increasing number of children are likely to be referred for genetic investigations as our understanding of genetic inheritance develops and a wider range of tests becomes available. Internationally, there are growing expectations that nurses will be able to discuss the referral and testing processes with parents, as well as facilitate informed decision-making. However, previous studies have highlighted the limited support received from staff in primary care services by parents of children referred for genetic investigation. Methods. A questionnaire survey of 345 health visitors was undertaken in 11 community health and social services trusts in Northern Ireland. Questionnaires were distributed at health visitor team meetings and returned in prepaid envelopes. Data collection occurred in 2003. Findings. Completed questionnaires were returned by 194 health visitors (56(.)2% response rate). Many were unsure of the location of their Regional Clinical Genetics Service and reported limited contact with these services. The majority of health visitors were not informed that children on their caseload had a forthcoming appointment, or that they had attended an appointment with a geneticist. Health visitors did not routinely visit parents of children referred for genetic investigation to discuss the appointment, and they reported limited confidence in supporting parents in relation to genetic investigations. Conclusion. Improved communication links are needed with Regional Clinical Genetics Services and to ensure that health visitors are informed when children on their caseload have been referred for genetic investigation. In addition, steps need to be taken to increase the coordination of support to parents provided by health visitors and staff within regional genetic services.