15 The role of the hemophilia nurse
1 Introduction
The role of the hemophilia nurse may vary between the Nordic hemophilia centers; however, the foundation of the role is care, treatment, education, coordination, support
,and development of care.The comprehensive care for persons with hemophilia (PWH) and other inherited bleeding disorders is complex and requires a multidisciplinary team. The hemophilia nurse plays a key role in the comprehensive care for PWH.
The nurse coordinates the care, educates PWH/caregivers in illness management, and has an important role in supporting the PWH and their families. The nurse is the first point of contact for PWH and their families [1–3].
The nurse has knowledge concerning the challenges in different life stages such as: Childhood, adolescence, early adulthood, and old age.
The life stages affect and influences the treatment and management of hemophilia in different aspects, and the nurse adapts the care accordingly. Overall, person-centered care with shared decision making is crucial for the success of achieving self-managing and self-reliant PWH [4–8].
The role of the hemophilia nurse has changed during the last decade. Nurses are Increasingly involved in and conducts research in nursing care which leads to more knowledge about the specific caring process securing an evidence-based approach to care.
The rapidly changing scene of hemophilia treatment with extended half-life products, gene therapy and non-factor treatment is challenging and changing the hemophilia nurses’ role and daily work.
2 Hemophilia nurse specific tasks
2.1 Care and treatment
The hemophilia nurse administrates factor concentrates, non-factor treatments, organize and performs blood sampling for pharmacokinetic evaluation.
The hemophilia nurse is responsible for initial clinical assessment, and for certifying that treatment is administered promptly in critical situations and likewise for managing continuous care and follow-up after bleeds [2].
The nurse recognizes the female PWH and is aware of the female-specific bleeding symptoms and the unique challenges this implies in life [2,5,9].
The hemophilia nurse has knowledge about hemophilia and complications that may occur from treatment or the illness itself.
The nurse must be aware of problems associated with inhibitors and the necessary extensive treatment.
The nurse makes home visits when needed and acts as a consultant to fellow nurse colleagues when PWH are hospitalized.
2.2 Education
The hemophilia nurse educates PWH, caregivers and other family members about hemophilia.
The nurse educates the PWH and caregivers in home treatment and other aspects of the illness. She/he encourages PWH and caregivers to increase their knowledge about the illness to enable independent home treatment and illness management. He/she provides information and education about the illness to preschool, school, nursing homes and to other health care providers.
The hemophilia nurse has knowledge of the inherited aspects of the illness and can perform genetic counseling and support to carriers.
The nurse educates the PWH/caregivers in how to manage and handle the advanced ITI treatment in a central venous access device [2,4,8] and educates PWH and their families about non-factor treatment, when needed.
Hemophilia nurses will play a key role in the delivery of gene therapy for hemophilia giving information, counselling, and support throughout the process. This is as important for all PWH, eligible or ineligible for gene therapy [10].
2.3 Coordination
The hemophilia nurse has, when needed, close contact with local health care professionals and the PWHs’ primary care contacts.
The nurse functions in a consulting role to colleague nurses when PWH are hospitalized. The nurse guides and educates other health care professionals in- and out of clinic.
The coordination and counseling of PWH, caregivers, preschool, schools, nursing homes and other health care professionals are carried out face to face as well as by telemedicine.
The nurse coordinates and facilitates the comprehensive team meetings and collaborates within the multidisciplinary team [1,2,4,5].
The nurse keeps and updates hemophilia registries to enable quality of care and evaluate treatment.
2.4 Support
The nurse plays an important role as a supporter of newly diagnosed children and their caregivers. She/he helps the family to adjust to the new situation with the illness and emphasizes the healthy aspects of the child [2,4,5].
The nurse recognizes and articulates the needs of the child, caregivers, and other family members to the hemophilia team.
The nurse plays an important role in assisting young PWH and their families in the transition process from childhood and dependency, towards adolescence and self-management through individualized support and continued education [4,5,8–12].
The hemophilia nurse is a resource, that primary and secondary caregivers can contact when they need guidance regarding hemophilia in daily life [2,4,5].
The supporting function of the nurse is vital for the aging PWH and likewise for families affected by inhibitors [4–7,13].
2.5 Development of care
Hemophilia nurses are involved in research to enable and enhance quality of care and evaluate treatment for PWH and their families.
The involvement in research may vary from participating in clinical trials to conducting independent nurse lead research [2,5].
Nursing research in the comprehensive care of PWH is important to develope knowledge about the illness.
The nurse participates in developing projects concerning the care of PWH, both in the hemophilia treatment center, nationally, and when needed internationally.
2.6 RECOMMENDATION
- The Nordic Hemophilia Guidelines recommend that the nurse has hemophilia specific knowledge. This includes knowledge about both the nursing and medical aspects of hemophilia to enable evidence-based care.
2.7 RECOMMENDATION
- The NHG recommend that the hemophilia nurse works according to the principles of person-centered care.
2.8 RECOMMENDATION
- The NHG recommend that the hemophilia nurse is involved in the development of comprehensive care for PWH.
2.9 RECOMMENDATION
- The NHG recommend that the hemophilia nurse participate in scientific congresses and meetings, both nationally and internationally, to enable best practice.