The patient's subjective experiences should make person-centred care visible in stem cell transplantation care - a qualitative study

Abstract

Abstract Purpose To describe patients’ subjective experiences, reported in a study specific questionnaire with open-ended questions, when being treated and cared for during autologous hematopoietic stem cell transplantation and to further discuss the importance of person-centred care in a clinical context. The hematopoietic stem cell transplant affected the patients' physical, mental, and spiritual well-being. Taking patients' needs into account can improve the care experience and alleviate the impact of difficulties during the transplant period. According to the Swedish Patient Act (2014: 821), patients have the right to be involved in their care Methods Sixty-four patients were asked to participate in the study and chose to take part. Fifty-two patients fulfilled the study specific questionnaire (81%). A thematic analysis, was performed with the support of Braun and Clarke, including both inductive and semantic approaches. This is secondary data, part of a larger project evaluating patient experience of safety and security in care during autologous hematopoietic stem cell transplantation regardless of inpatient or outpatient care. The study has a qualitative, pragmatic, comparative design. Results Three themes emerged from the analysed data: subjectively perceived positive information and support; subjectively perceived negative information and support; subjective desired increased possibility of person-centred care. Conclusions The results of the upcoming study can design new functional tools to support person-centred care in the care of patients undergoing hematopoietic stem cell transplantation or cared for in the haematology department. The results revealed, despite unequally distributed groups, similar subjective experiences of care.