Novel Insight into How Nurses Working at PH Specialist Clinics in Sweden Perceive Their Work

Abstract

Outpatient pulmonary hypertension (PH) specialist centers have an important role in the optimal management of pulmonary arterial hypertension (PAH) and chronic thromboembolic pulmonary hypertension (CTEPH). The aim of the present study was to gain an understanding of the work facing nurses at the outpatient PH specialist centers in Sweden. All nurses (n = 14) working at the outpatient PH specialist centers in Sweden were included. Qualitative content analysis was employed to analyze the interviews, wherein an overarching theme emerged: “Build and maintain a relationship with the patient”. Three categories described the nurses’ experiences: “Ambiguous satisfaction regarding information and communication”, “Acting as a coordinator” and “Professional and personal development”. To provide good patient care, the nurses described the key components as the ability to give information on all aspects of the disease and their availability by phone for patients, their relatives, and other healthcare resources. This requires evidence-based, specialist knowledge about the disease, its care, and treatments as well as experience. In conclusion, working as a nurse at the outpatient PH specialist centers highlight the advantages, expectations, and difficulties in working with patients with a rare and life-threatening illness. The overall knowledge and skills were high, but the nurses expressed a need for in-depth and continued training.

The Odyssey from Symptom to Diagnosis of Pulmonary Hypertension from the Patients and Spouses Perspective

“…28 The present study showed that patients and spouses appreciated being seen at a PH specialist clinic, whose purpose is to provides good holistic care including treatment, support, and accurate information about the disease in a multi-professional environment. 4,29 Despite the changes and challenges a chronic disease infer on life, patients and spouses adapt and it might even strengthen a relationship. 30 The present study supports this by showing that even with a grim diagnosis as PAH or CTEPH, patients, and the spouses shared a feeling of relief that the search was over.…”