aCent - a model for person-centred care and support

allogenic hematopoietic stem cell transplantation person-Centered systematic nurse-led support interventions

An allogeneic stem cell transplant means that a patient receives new stem cells from a donor. In haematological diseases, such as blood cancer, the goal is to cure the disease, but the treatment is demanding and the outcome is often uncertain. The time spent in hospital is often long and requires the patient to be isolated to avoid contracting infections. The treatment is often physically and psychologically demanding, and the patient may experience physical, psychological, social and existential symptoms, and problems that require support in various ways. When the stem cells show early signs of white blood cell production, the patient is discharged home. Recovery takes time and the care continues with follow-up in outpatient clinics for several months, with longer intervals between visits over time depending on the patient’s health.

In order for the patient and family members to be prepared for the different steps in the process of allogeneic stem cell transplantation, and to be able to handle the different situations in the care, it is important to provide care and support based on the needs of the individuals. The aim of the research project aCent is to develop and implement a model for person-centred systematic support interventions and to evaluate how the model affects the quality of life of patients and family members.

The model is being developed based on theories, previous research and clinical experience, including studies that have already been carried out in the research projects PerCent and Hold on. These studies showed that patients experienced that the dialogue with the nurses improvement when a specially developed conversation guide was used as a starting point for the conversations, and the patients also felt that they could better structure their own symptoms and feelings. Similar results have also been shown for family members. The model, therefore, includes the systematic use of a specific conversation guide as a starting point for conversations between patient and nurse, as well as between family members and nurses, to capture the patient's and family members’ needs for support and the patients’ health. The model is being developed in collaboration with former patients, family members, and healthcare staff through various workshops. Based on what emerges from the workshops, a model will be designed for nurse-led person-centred support interventions. As part of the model, all nurses will participate in an online training course and joint workshops about the model, which will also cover person-centred care and the conversation guide. Procedures for implementing the model will be first tested on a smaller scale in a Feasibility Study at two stem cell transplantation centres in Sweden - Stockholm and Lund. In the next step, the aCent model will be tested in a national quasi-experimental study, where aCent will be implemented at two centres, and patients and family members from the other four centres in the country will form the control group.

If the study shows that the model improves the quality of life of patients and family members, the hope is that it can be used in all clinics in Sweden performing stem cell transplants.

The project is a collaboration between Karolinska University Hospital, Skåne University Hospital, Lund University, Linnaeus University, Ersta Sköndal Bräcke University, Sophiahemmet University College and Karolinska Institutet, with funding from the