Patients’ Main Concerns About Having a Sibling Stem Cell Donor – A Grounded Theory Study

Abstract

Background:There is limited knowledge about the perspective of patients undergoing allogeneic haematopoietic stem cell transplantation (HSCT) about having a sibling as donor. It is essential to understand the main concerns of stem cell recipients in order to enable nurses to provide person-centred care.Objectives:The study aim was to explore patients’ main concerns about having a sibling stem cell donor and how the patients handle them, from immediately before until one year after transplantation.Methods:Twenty-eight interviews were performed prospectively during one year with ten adult sibling stem cell recipients with a mean age of 52 years (range 19-68 years). The interviews were analyzed by the Grounded Theory method.Results:The core category Recompensation summarises the process in the generated grounded theory including the three main categories; Invest, Compensate and Celebrate. Recompensation is defined as a lasting compensation given by the recipient to the sibling donor for the loss or harm suffered or effort made. The sense of having to reward, protect, appreciate, maintain peace and work on the relationship with the sibling donor at the same time as having to accept a serious illness, cope with their situation and promote their own recovery is strenuous for the recipients.Conclusion:The main concern for stem cell recipients during their first post-transplant year is to recompensate the sibling donor by investing, compensating and celebrating her/him. Although there is a positive aspect of recompensation, it can also imply pressure and guilt.

Perceptions of experiences of having a sibling stem cell donor

“…One year after HSCT the recipients have a sense of gratitude towards the donor and want to thank her/him while at the same time struggling with their own health. [13] At this stage the sibling donors have moved on with their lives and do not wish to be rewarded. [31] In the same way as the recipients' and the donors' perceptions of their experiences change over the course of the first year, their need for education, information and support also changes.…”

“…[12] During the first year posttransplant the stem cell recipients' main concern is how to recompensate the sibling donor. [13] The most common side effects of stem cell donation are fatigue, headache, bone pain, muscle pain and nausea, which are mainly transient. [14][15][16] Major complications after stem cell donation are uncommon, however, events such as deep vein thrombosis, splenic rupture and cardiac arrest have occurred.…”