Background Managing Systemic Sclerosis (SSc) requires disease-specific knowledge not only of patients and their family caregivers but also of health professionals. To improve the self-management of skin and mucosal manifestations in SSc patients, an education program was developed and implemented in a Swiss university hospital. An advanced practice nurse (APN) and four registered nurses offer individual counseling and group sessions since October 2011. A first evaluation identified missing aspects and the need to extend the program (Kocher et al., 2013). In a next step, the role of the APN was developed further.
Objectives To establish an APN who offers counseling to SSc patients and family caregivers, taking their complex and individual needs into account, supports the nursing team in providing evidence-based care for this patient group, and is part of national and international SSc networks.
Methods The development of the APN role was based on the model described by Hamric et al. (2009) and on the PEPPA Framework (Bryant-Lukosius et al., 2004). Educational visits in England and in the Netherlands as well as the participation in international conferences provided new insights and contacts to the APN. The education program was extended based on results of the first evaluation, different forms of education were integrated, and a connection to the SSc patient association was established.
Results From 2011 to 2013 82 counselings of 59 SSc patients were performed, 51% of them by the APN. She advised them on skin sclerosis (21%) and sicca symptoms (38%). In addition, she provided timely and understandable information on SSc pathophysiology and symptoms (41%) and arranged two group sessions on sicca symptoms and appearance-related changes. In extending her services, the APN currently visits all inpatients with SSc, offers telephone and e-consultations, facilitates peer support and is interacting with the SSc patient association. Activities within the extended education program are systematically documented and a longitudinal evaluation regarding self-efficacy and symptoms is ongoing.
Conclusions The driver of the implementation of the new APN role was the need to improve care for SSc patients and their families. The role was successfully established and will be further developed to provide comprehensive self-management support.
Bryant-Lukosius D & DiCenso A (2004). A framework for the introduction and evaluation of advanced practice nursing roles. Journal of Advanced Nursing, 48, 530-540.
Hamric AB et al (2009). Advanced practice nursing: An integrated approach, 4th edition, St. Louis: Saunders Elsevier.
Kocher A et al (2013). Skin and mucosa care in systemic sclerosis – patients' and family caregivers' experiences and expectations of a specific education programme: A qualitative study. Musculoskeletal Care, 11: 168-178.
Disclosure of Interest None declared
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