The psychosocial aspects of donating blood stem cells: The sibling donor perspective

Abstract

The collection of peripheral blood progenitor cells (PBPC) by apheresis has become common in related allogeneic donors. However, the acceptability of the procedure to donors has not been documented. The purpose of this baseline case series study was to evaluate the psycho-social dimensions of apheresis from the perspective of healthy sibling donors and to explore issues surrounding fully informed consent including voluntary donation. At the first interview to discuss donation, 17 consecutive human leucocyte antigens (HLA) identical sibling donors who chose to donate PBPC were recruited to the study. They then completed both scales of the State-Trait Anxiety Inventory. The state scale was completed again immediately before first apheresis. At the end of the final apheresis, the donors were interviewed again by an independent researcher using a standardised questionnaire. All aspects of the procedure were well tolerated, including levels of anxiety and pain. Donors donated even if the relationship with their sibling was poor. However, some areas for improvement were highlighted. Eight (47%) donors were asked to donate by their sibling or another close relative, and this gave them no real volunteer status. Written information was judged important by 11 (65%) donors, but the material used was limited. The possibility of a poor outcome for the recipient was not well understood. The content of the written documentation and the management of confidentiality in terms of donor volunteer status needed to be addressed. A further study regarding the follow-up needs of donors, including those where the outcome is poor, is underway.

Having a sibling as donor: Patients' experiences immediately before allogeneic hematopoietic stem cell transplantation

“…Most of the participants emphasized the importance of receiving comprehensive information about HLA typing and donation and the opportunity to ask questions before making their decision. This agrees with findings from other studies where sibling donors have reported a need for information (Wiener et al, 2008;Williams et al, 2003). The participants also pointed out the importance of positive care provision, having confidence in the health professionals and getting support from them and relatives before deciding whether or not to undergo HLA typing and possible donation.…”

“…Earlier studies have shown that sibling donors are in a vulnerable situation (Bredeson et al, 2004;Fortanier et al, 2002;Wiener et al, 2008;Williams et al, 2003), and Study II indicates that this is true even for siblings who are unable to donate. This has also been shown in a case study (Takita et al, 2011) describing the stress experienced by a sibling who did not HLA match her ill sister.…”

“…The reasons behind it are somewhat unclear. The sibling donor situation in HSCT has been described in earlier studies (Christopher, 2000;Labott & Pfammatter, 2014;Pillay et al, 2012;Williams et al, 2003) and sibling stem cell donors have said that their relationship with the ill sibling changed in connection with the donation (Wiener et al 2008;Williams et al 2003). We do not know much about patients' experiences of having a sibling as donor.…”

“…However, those that have been performed show that these donors are in a vulnerable situation. The adequacy of the preparation for donation has been shown to influence the experience of distress, and anxiety has been reported in relation to not receiving sufficient information (Munzenberger et al, 1999;Pillay et al, 2012;Williams et al, 2003). Negative experiences, such as anxiety, pain and guilt as well as positive experiences, such as happiness about being a match, an increased sense of self-worth and of pride and a closer rela-tionship with the sick sibling have been described.…”

“…The questionnaire was, based on clinical experiences and earlier studies (Christopher, 2000;Horowitz & Confer, 2005;Wiener et al, 2008;Williams et al, 2003) and was specially developed for the survey in this study purposely to meet the aim of the study. For validation an initial version was sent to five experts in the field at different HSCT centres in Sweden for comments and a new version was tested in a pilot study (Brace, 2008).…”