Perceptions of experiences of having a sibling stem cell donor

Abstract

Objective: The aim was to explore stem cell recipients’ perceptions of experiences of having a sibling donor from pretransplantation to one year afterwards in order to support their learning process. Methods: Ten adult recipients, five women and four men, with a mean age of 52 years (19-68 years) receiving stem cells from a sibling donor were included consecutively. We used a phenomenographic approach to analyse the 28 open-ended interviews that took place before transplantation and three months and one year afterwards. Results: Ten categories emerged comprising 110 different perceptions pertaining to: Advantages, Acknowledgement, Risk evaluation, Complexity, Family impact, Non-directed donors, Self-identity, Facing the reality, Knowledge seeking and Caring encounters. Three distinct phases of the learning process were identified from before transplantation to one year afterwards, i.e., risk-benefit analysis, outcome expectations and facing the reality. Conclusions: Before transplantation the recipients had many perceptions about having a sibling donor and focused on a thorough risk versus benefit analysis for both themselves and the donor. Three months after transplantation the recipients sought knowledge in order to have realistic expectations and comprehend their future. One year after transplantation the recipients had few perceptions and focused on facing the reality, irrespective of whether the outcome was good or bad. The generic perceptions of the recipients over time were that serious blood diseases are burdensome and lethal, while treatment should include continuity of care.