Adult related haematopoietic stem cell donor care: Views of Transplant Nurses

https://doi.org/10.1016/j.ejon.2019.05.012Get rights and content

Highlights

  • Despite the expansion of related donor transplants, guidelines for related donor care management are still lacking.

  • Transplant Nurses are well placed to provide holistic care but report lack of training to respond to challenges.

  • Common challenges include family conflict, donor ambivalence and distress after recipient death.

  • Communication skills training and development of referral pathways to access psychosocial care are needed.

  • Guidelines to promote consistency and strategies for responding to challenges should be a priority.

Abstract

Purpose

The objective of this mixed-methods study was to explore the experiences and perspectives of Transplant Nurses (TNs) in caring for related donors (RDs).

Method

In this mixed-methods study, both quantitative and qualitative data were collected from semi-structured interviews with seven TNs from two clinical hospitals. Closed and multiple-choice questions regarding the organisation of RD care were administered in addition to an in-depth exploration of TN experiences and perspectives of RD care. Interviews were audio-recorded, transcribed, and qualitative data was subjected to thematic analyses.

Results

The analysis identified 5 themes relating to RD care: managing complex family dynamics and ambivalence; concerns about RD psychological adjustment; identifying and correcting RD misperceptions; limited guidelines and structured processes; limited training for the role and access to supervision. Five themes were identified describing the barriers to delivering RD care: RDs unwilling to express their concerns; language; time constraints; medical priority of clinicians; biomedical focus of TNs. All TNs agreed they would like additional training in the psychosocial management of RDs. TNs identified key areas for improvement, including psychosocial support and educational material.

Conclusions

Our results highlight the significant role of TNs in RD care, and underline issues specific to the current RD care environment. Lack of training for the role and limited guidelines addressing RD care management are key issues which may detrimentally affect RD care. The pivotal role of TNs must be acknowledged and supported by improving TN training and implementing clear guidelines for the management of RDs.

The trial has been registered on the publicly accessible register: www.clinicaltrials.gov site with the identifier ACTRN12617000407392.

Introduction

Haematopoietic stem cell (HSC) transplantation provides the only possible hope of cure for many otherwise incurable malignancies. The outcomes of HSC transplantation are strongly affected by the degree of matching between the donor and transplant recipient. Donor-recipient matching involves comparing tissue types, known as human leukocyte antigen (HLA) loci that distinguish ‘self’ from ‘non-self’. A poorly HLA-matched donor-recipient transplant can lead to graft-versus-host-disease (GVHD), leading to increased morbidity and mortality (ABMTRR, 2016; Petersdorf, 2007; Petersdorf et al., 2001; Yang et al., 2018).

Given these issues, every effort is made to find the best possible HLA-matched donor. HLA types are inherited so HLA-identical siblings are preferred donor candidates since they have the greatest chance (25%) of being HLA-matched with the recipient (Petersdorf, 2007). For those without an identical HLA-matched sibling donor, HLA-haploidentical (half matched)-related donors are now typically chosen in favour of HLA-matched unrelated donors because of better GVHD control and relapse-free survival (Kanakry et al., 2016; McCurdy et al., 2017; Solh et al., 2016). Inclusion of HLA-haploidentical related donors extends the pool of donors to include parents and children.

Coinciding with the increasing activity in related donor (RD) transplants is the recognition of the important role that Transplant Nurses (TNs) have in caring for RDs (Polomeni et al., 2016). TNs are key members of the multidisciplinary transplant team. As the first point of contact for RDs, TNs are vital in educating RDs and providing care throughout the decision-making, testing and donation process. Although there are guidelines for TNs to respond to unrelated donors (URDs), there are no similar guidelines to assist them in responding to RDs (Anthias et al., 2016; Anthias et al., 2015; Clare et al., 2010; O'Donnell et al., 2010). Compared with URDs, RDs face different and complex issues.

RDs have a dual role; as family members they experience the challenges of a life-threatening illness of their family member. As donors, their cells offer the best possibility of ensuring the recipient's survival. Negative experiences, such as feeling anxious, isolated, responsible and guilty for poor transplant outcomes have been described (Garcia et al., 2013; Pillay et al., 2012; Williams et al., 2003; Zomerdijk et al., 2018). In addition, negative psychosocial outcomes have been reported for donors of recipients who died (Chang et al., 2003; MacLeod et al., 2003). Presently, there is no long-term follow-up of RDs. This is in contrast to the follow-up of URDs, whom are offered follow-up by donor registries annually for a minimum of ten years after donation (Aprili et al., 2013). As such, in the absence of follow-up support, these issues are not addressed for RDs.

Further differences have been observed regarding the consent of RDs. To ensure confidentiality and prevent coercion, the evaluation of a URD is never conducted by a physician in the transplant team caring for the recipient (Hurley and Raffoux, 2004). In contrast, RDs are frequently managed by transplant physicians in the same team as that caring for the recipient. (Anthias et al., 2015, 2016). O'Donnell et al. (2010) found that in over 70% of centres in the United States, transplant physicians assessing a RD were involved in the care of the recipient. In 2010, 52% of the respondents of a European Group for Blood and Marrow Transplantation Nurses Group survey indicated that RDs in their centre were consented by transplant physicians caring for recipients (Clare et al., 2010). These findings suggest that a conflict of interest could arise in the management of related donors at a substantial number of transplant centres.

The lack of accepted guidelines presents substantial challenges for TNs in their assessment, judgment and decision-making when caring for RDs. Assuming current transplant trends continue; the increasing demand for RDs will increase the burden of RD care on transplant centres and individual TNs. To avoid potential problems and to help TNs achieve best practice in RD care management, it is important to gain a better understanding of the current RD care environment from the perspective of TNs and to identify areas for improvement in RD care in the future. The views of TNs are important as they are the ‘gatekeepers’ to family members donating and are integral in implementing changes in clinical practice to benefit RDs.

This study investigates (1) the perceptions of TNs about the psychosocial implications of donation by RDs; (2) the role of TNs in RD care; and (3) the adequacy of current RD practices in addressing RD needs from the perspective of TNs.

Section snippets

Design

This study was designed as a mixed-methods design. We adapted a quantitative and qualitative semi-structured interview guide designed by Polomeni et al. (2016), consisting of 28 open, closed and multiple-choice questions (see Appendix 1). The interview guide comprised three main sections. The first two sections comprised closed and multiple-choice questions and the latter comprised open-ended questions. Each TN participated in one interview. The lead author (NZ) conducted all interviews in

Demographic characteristics

All of the TNs working at the adult HSC transplant units (n = 7) gave consent to participate in our study. The TN participants consisted of six Bone Marrow Transplant Nurse Coordinators and one Apheresis Nurse Practitioner. All TNs were female and highly experienced with over half of the participants having over 10 years’ experience working in Haematology and a minimum of 1 year as a TN. Table 1 shows the demographic characteristics of TNs.

Organisation of related donor care

Table 2 reports TNs’ responses to questions about the

Discussion

Unlike URDs, RDs are actively involved in the transplant process and witness first-hand the changes in their relative's health. RDs are in a position of fulfilling both family member and donor roles, which may entail psychological vulnerability in that their role differs from that of URD groups. As a duty of care, transplant units must therefore be aware of and respond to the needs of RDs.

Conclusion

TNs describe concerns about the informational and psychosocial needs of RDs and the lack of clear referral pathways to access expert assistance. TNs highlight the need for improved RD information prior to obtaining consent, including details of the donation process which emphasizes the voluntary nature of donation and the right of the RD to refuse HLA typing or donation.

TNs are acutely aware of the complexity of balancing urgent treatment for the recipient against the needs of RDs and are well

Declaration of interest

None declared.

Funding statement

This work was supported by the Australian Government Research Training Program Scholarship; The Royal Brisbane & Women's Hospital Foundation Postgraduate Scholarship; and The Royal Brisbane & Women's Hospital Foundation Diamond Care Grant.

References (39)

  • C. Anthias et al.

    Related hematopoietic cell donor care: is there a role for unrelated donor registries?

    Bone Marrow Transplant.

    (2015)
  • G. Aprili et al.

    Recommendations for managing the donation of haematopoietic stem cells from related and unrelated donors for allogeneic transplantation

    Blood Transfusion

    (2013)
  • V. Braun et al.

    Using thematic analysis in psychology

    Qual. Res. Psychol.

    (2006)
  • K.A. Christopher

    The experience of donating bone marrow to a relative

    Oncol. Nurs. Forum

    (2000)
  • S. Clare et al.

    Management of related donor care: a European survey

    Bone Marrow Transplant.

    (2010)
  • N. Duerinckx et al.

    Predonation psychosocial evaluation of living kidney and liver donor candidates: a systematic literature review

    Transpl. Int.

    (2014)
  • K. Eriksson et al.

    The Suffering Human Being

    (2006)
  • C.H. Fellner et al.

    Altruism in disrepute: medical versus public attitudes toward the living organ donor

    N. Engl. J. Med.

    (1971)
  • A. Forsberg et al.

    The essence of living parental liver donation–donors’ lived experiences of donation to their children

    Pediatr. Transplant.

    (2004)
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