In Israel, most families of cadaver organ donors and transplant recipients who had made contact wanted transplant coordinators to facilitate this contact
- Correspondence to Paul Gill
Faculty of Health, Sport and Science, University of Glamorgan, Pontypridd, CF371DL, UK;
Implication for practice and research
■ Establishing contact between donor families and transplant recipients is complex and often associated with perceived benefits and problems that require careful consideration.
■ Transplant coordinators have an important role to play in mediating contact between donor families and transplant recipients and managing the needs, expectations and well-being of both parties.
■ Further research is required to establish the longer term consequences of continued contact and the implications of establishing contact post-transplant failure.
Most transplantable organs are provided by brain-dead, multi-organ donors. The donation process is such that donor families and transplant recipients generally know little about each other. However, some form of communication between the two, often in the form of anonymised letters, is now relatively common. Such information has been found to be beneficial; for donor families it can help demonstrate that something meaningful has come from death and for recipients and provides a means of expressing gratitude to the donor family.1,–,3 However, research also indicates that such contact can be problematic and can result in unrealistic expectations and onerous feelings of guilt. Transplant coordinators therefore have an essential role to play in managing this complex process.
The authors conducted a survey, using a verbally administered, self-designed questionnaire, to explore donor families' and transplant recipients' views regarding making contact with the other party, post-transplant. Hebrew speaking adults who had participated in a successful organ transplant, either as a donor family member or transplant recipient, between 1998 and 2007 were invited to participate. Nine hundred people met the inclusion criteria and 135 participated in the study (75 transplant recipients and 60 donor family members; primarily spouses or siblings). The questionnaire composed of 32 items, using a mixture of open and multiple-choice questions. Data were analysed statistically by means, frequencies and correlation coefficients.
Sixty-two (46%) participants had made contact and 73 (54%) had not. Donor family members accounted for 67% (n=40) of those who had made contact, whereas 71% (n=53) of those who had not were transplant recipients. Of those who had made contact, 89% reported benefits and 58% ‘disbenefits’ with doing so. Those who had made contact were more likely to want some level of future engagement and were more likely to be satisfied with the situation than those who had not made contact. Most participants felt that the transplant coordinator had a key role to play in mediating communication between the two parties.
Although the study provides a useful insight into the benefits and problems associated with contact and non-contact between donor families and transplant recipients, it is unclear what types of contact actually occurred and how they compare and contrast. A more detailed analysis of the findings would have been useful, particularly in relation to the potential impact of participant demographics on responses (eg, age and type of organ transplanted). The research provides little insight into the rationale for responses, including the reasons for wanting (or not wanting) to establish contact.
The study largely focuses on the benefits associated with making contact, despite the fact that most participants had not made contact, and most of those who did were donor families. It is also unclear what these perceived benefits were, since the authors do not fully elaborate. Furthermore, although they briefly discuss the benefits (eg, avoiding emotional meetings and getting on with their own life) and ‘disbenefits’ of not making contact (eg, feeling disappointed and inability to articulate thanks), the authors do not fully explicate the perceived problems associated with making contact.
The authors' use of terminology such as ‘cadaver- harvested organs’ is questionable, as donor families, in particular, are known to find such language inappropriate. Evidence from this and other studies also demonstrates that recipients are less likely to want to establish contact with donor families and transplant coordinators should therefore carefully consider this when contemplating the prospect of establishing contact post-transplant.
The questionnaire was designed by the researchers (and validated through a process of content/face validity) for Hebrew speakers and does not appear to have been piloted prior to full data collection. The reliability of the questionnaire cannot therefore be established.
The study does, however, highlight the essential role the transplant coordinator can play in mediating such contact and safeguarding the well-being of donor families and transplant recipients.