New thesis on patient's preparedness and self-care in allogeneic stem cell transplantation

My thesis focuses on patients’ experiences of symptom burden, their preparedness for all aspects of the treatment process, confidence in their inherent abilities, and self-care in allogeneic hematopoietic cell transplantation (allo-HCT). Furthermore, it examines the conditions for nursing care and the concepts of preparedness and self-care from a nursing perspective.

Which are the most important results?  

Patients often experience many symptoms throughout the course of their illness. Symptoms need to be systematically measured using instruments where the patient self-assesses their symptoms, including both occurrence and distress. This needs to be done throughout the allo-process to detect symptoms early that may affect the patient’s health and quality of life. The assessments should be followed up with conversations where nurses play an important role in both preparing and educating the patient to monitor and manage symptoms as part of self-care in allo-HCT.

Nurses in the highly specialized care that allo-HCT constitutes need to become more aware of and have the opportunity to use their educational function to prepare patients for the various parts of the transplantation and educate them in self-care. This is something that patients expect but also need to manage their health and life situation after discharge.

In cancer care, there are recommendations to use the self-assessment and conversation tool Assessment of Rehabilitation Needs Checklist. After Assessment of Rehabilitation Needs Checklist, together with a follow-up conversation between the patient and nurse, has been implemented in allo-HCT care, the communication between nurse and patient appears to develop into more person-centered communication. In this person-centered communication, the patient’s experiences and needs are the focus of the conversation. Patients can also learn from self-assessing their symptoms and learn to listen to their bodies through the application of a self-assessment instrument. 

How can this new knowledge contribute to the improvement of people’s health?

People often dislike being surprised and prefer to be prepared to handle their situation if something unexpected happens. This perception also applies to illness. Self-care is an ongoing process and needs to be initiated early in the care process, based on the patient’s needs and wishes. Nurses have the opportunity to help patients achieve preparedness through conversations and education in self-care, so that patients can understand what may happen after an allo-HCT and be able to manage self-care after discharge.

What’s in the future for you? Will you continue to conduct research? 

I work as a lecturer at Sophiahemmet University and would like to ensure that the results from my dissertation can be discussed in undergraduate and specialist education programmes.

I want to continue my research and am part of a research group called aCent, whose ongoing project focuses on developing and implementing a person-centered model in allo-HCT.