Sibling stem cell donors’ perceptions of experiences of donation

Abstract

Objective: What and when should we tell sibling donors about the donation process? Although we provide extensive information to sibling stem cell donors, we lack knowledge of their perceptions and how they change during the donation process. Therefore, the aim of this study was to explore sibling donors’ perceptions of experiences of stem cell donation from pre-donation to one year afterwards.
Methods: Applying a phenomenographic approach we performed an in depth, longitudinal exploration of adult sibling donors’ perceptions of experiences based on 29 open-ended interviews performed before donation, as well as three and twelve months afterwards. Ten consecutive adult sibling donors with a median age of 54 years (range 26-66 years) due to donate stem cells at one Swedish transplant centre participated.
Results: A detailed learning process among sibling stem cell donors during the first year after donation was identified through 83 different perceptions pertaining to motive, obligation, responsibility, preparation, circumstances, recovery and relationship. The perceptions changed over the first year after donation due to experiences of duty, pressure, burden, security, learning, struggle and closeness. Educational strategies and tools must cover all these perceptions to narrow the sibling donors’ knowledge gap and support their learning process.
Conclusions: In the course of the year sibling stem cell donors’ perceptions of their experiences change and thereby their need for education, information and support. As the learning process stems from a range of experiences, there is a need to individualise the care and further study sibling stem cell donors’ levels of burden and distress.