Objective: Specialist advanced practice nursing in hemoglobinopathies has a rich historical and descriptive literature. Subsequent work has shown that the role is valued by patients and families and also by other professionals. However, there is little empirical research on the complexity of activity of these services in terms of interventions offered. In addition, the work of clinical nurse specialists in England has been devalued through a perception of oversimplification.
Purpose: The purpose of this study was to understand the complexity of expert nursing practice in sickle cell and thalassemia.
Design: The approach taken to modeling complexity was used from common methods in mathematical modeling and computational mathematics. Knowledge discovery through data was the underpinning framework used in this study using a priori mined data. This allowed categorization of activity and articulation of complexity.
Result: In total, 8966 nursing events were captured over 1639 hours from a total of 22.8 whole time equivalents, and several data sources were mined. The work of specialist nurses in this area is complex in terms of the physical and psychosocial care they provide. The nurses also undertook case management activity such as utilizing a very large network of professionals, and others participated in admission avoidance work and education of patients’ families and other staff.
Conclusion: The work of nurses specializing in hemoglobinopathy care is complex and multidimensional and is likely to contribute to the quality of care in a cost-effective way. An understanding of this complexity can be used as an underpinning to establishing key performance indicators, optimum caseload calculations, and economic evaluation.
Author Affiliations: Reader in Advanced Practice, London Southbank University (Dr Leary), and Emeritus Professor of Nursing, University of West London (Dr Anionwu), London, England.
This work was commissioned by the NHS Sickle Cell and Thalassaemia Screening Programme. It was funded by Roald Dahl’s Marvellous Children’s Charity and supported by the All Party Parliamentary Group for Sickle Cell & Thalassaemia.
The authors report no conflicts of interest.
Correspondence: Alison Leary, PhD, RN, Reader in Advanced Practice, London Southbank University, 103 Borough Rd, London, England SE1 0AA (firstname.lastname@example.org).