14 Hemophilia nurse role
Recommendations
The functions of the hemophilia nurse may vary in the centers of the Nordic countries, however the foundation of the function is care, education, coordination and support.
The comprehensive care of persons with hemophilia (PWH) and other inherited bleeding disorders is complex and it requires a multidisciplinary team. The hemophilia nurse plays a key role in the comprehensive care of the PWH. The nurse coordinates the care, educates PWH/caregivers in illness management and has an important role in supporting the PWH and the family. The nurse is a link between the PWH and the family, the hemophilia center and society. The nurse is the first point of contact for PWH and their families [11,197,198].
The role of the hemophilia nurse has greatly changed during the last decade. The rapidly changing scene of hemophilia treatment with extended half-life products, gene therapy and non-factor treatment are challenging and changing the hemophilia nurse role and daily work. Nurses are also increasingly involved in, and conducts, research in the area of nursing care which leads to more knowledge about the specific caring process and supports the profession to have an evidence-based approach.
The hemophilia nurse is responsible for initial clinical assessment, and for certifying that treatment is administered promptly in critical situations and likewise for managing continuing care and follow-up after bleeds [198].
The hemophilia nurse educates PWH, parents and other family members about hemophilia. He/she provides information and education about the illness to preschool, school, nursing homes and to other health care providers. The nurse also has close contact with local health care professionals and the PWHs primary care contact regarding their inherited bleeding disorder. The nurse makes home visits when needed, as well as acting as a consult towards nurse colleagues when PWH are hospitalized. The hemophilia nurse coordinates and facilitates the comprehensive team meetings and collaborates within the multidisciplinary team [197–200].
The nurse plays an important role as a supporter for newly diagnosed children and their parents. He/she helps the family to adjust to the new situation with the illness and emphasize the healthy aspects of the child [198–200]. The nurse recognizes and articulates the needs of the child, parents and other family members to the hemophilia team. The nurse educates the parents in home treatment and other aspects of the illness and encourages the parents to increase their knowledge about the illness and to independently be able to perform home treatment. Furthermore he/she plays an important role to assist young PWH, and their family, in the transition process to adolescence and self-management through individualized support and continued education [201]. The nurse has knowledge about hemophilia and complications that may occur from treatment or the illness itself. The hemophilia nurse is a resource, which parents or others around the child can turn to when they need guidance regarding hemophilia in daily life [198–200].
The supporting function of the nurse is vital for families affected by inhibitors [202,203]. The nurse must be aware of problem associated with inhibitors and the necessary extensive treatment. He/she educates the PWH/parents on how to manage and handle the advanced ITI treatment in a central venous access device [198,199,204] and likewise to educate PWH and his family about non-factor treatment when needed.
The nurse has knowledge about challenges at different life stages such as: childhood, adolescence, young adults and elderly. The life stages affect and influence the treatment and management of the hemophilia in different aspects and the nurse adapt the way of working. Overall, person-centered care with shared decision making is crucial for the success of achieving good self-management and self-reliant PWH [199,200,204–206].
The hemophilia nurse has knowledge of the inherited aspects of the illness and can perform genetic counseling and support carriers. The nurse recognizes the female PWH and is aware of the female-specific bleeding symptoms and the unique challenges this implies in life [198,200,207].
Hemophilia nurses will play a key role in the delivery of gene therapy for hemophilia buy giving information, counselling and support throughout the process. This is as important for PWH that are eligible as for PWH ineligible for gene therapy [208].
Hemophilia nurses are involved in research to achieve a better care for PWH and their families. The involvement in research may vary from participating in clinical trials to conducting independent lead nursing research [198,200].
The haemophilia nurse has many functions among which the most important are:
Educate about illness management and home treatment and support PWH and their families using person-centered care.
Perform administration of factor concentrates, non-factor treatment and blood samples.
Clinical assessments, plan and participate in follow ups.
Telephone counseling to PWH, parents, preschool and other health care professionals.
Guide and educate other health care professionals in- and outpatient clinic.
Consultant role to colleague nurses when PWH are hospitalized.
Inform preschool, school and nursing homes etc. about hemophilia.
Keep and update hemophilia registries.
Participate in research and clinical trails.
Participate in nursing research and developing project about hemophilia and other inherited bleeding disorders.