Process evaluation of specialist nurse implementation of a soft opt-out organ donation system in Wales

Abstract

Background Wales introduced a soft opt-out organ donation system on 1st December 2015 with the aim of improving consent rates. In the first 18 months consent rates improved but the difference could not solely be attributed to the soft opt-out system when compared with similar improvements in consent rates in other UK nations. Methods We conducted an 18 month post-intervention qualitative process evaluation involving 88 family members of 60/211 potential organ donor cases, and 19 professionals. Views and experiences of Specialist Nurses in Organ Donation who implemented the new system and family members who were involved in decision making were collected to see how their respective behaviours impacted on implementation. Data collection included interviews, focus groups and qualitative questionnaire data. Results Implementation was considered a success by Specialist Nurses in Organ Donation. The bespoke retraining programme and responsive approach to addressing initial implementation issues were identified as examples of best practice. Specialist Nurses in Organ Donation were valued by family members. Six implementation issues had an impact on consent rates – the media campaign had gaps, the system was more complex, challenges in changing professional behaviours, inability to obtain the required standard of evidence from family members to overturn a donation decision, increased complexity of consent processes, and additional health systems issues. Conclusion This is the first comprehensive process evaluation of implementing a soft opt-out system of organ donation. Specific elements of good implementation practice (such as investment in the retraining programme and the responsiveness of Specialist Nurses in Organ Donation and managers to feedback) were identified. The key message is that despite retraining, nursing practice did not radically change overnight to accommodate the new soft opt-out system. Policy makers and health service managers should not assume that nurses simply need more time to implement the soft-out as intended. Additional responsive modification of processes, ongoing training and support is required to help with implementation as originally intended. Scotland, England and the Netherlands are introducing soft opt-out systems. There is an opportunity to learn from initial implementation in Wales, by acknowledging gaps, good practice and opportunities to further improve processes and nursing practices. Electronic supplementary material The online version of this article (10.1186/s12913-019-4266-z) contains supplementary material, which is available to authorized users.

Designing a co‐productive study to overcome known methodological challenges in organ donation research with bereaved family members

“…The study provides new insights and understanding about implementation of a soft opt-out system of organ donation from the perspective of family members and professionals (See Box for summary of empirical study results). 11,12 Co-production worked well but it was an expensive research cost both in terms of resources (putting on events and activities) and…”

“…Elsewhere, we report the protocol, 10 the impact of the soft opt-out on consent rates 11 and findings from the process evaluation. 12 The study design, recruitment targets and outcomes are shown in Figure 1 as context to evaluating the impact of co-production on study processes and outcomes in this paper. We hypothesized that co-production could be a way to address the methodological challenges that the previous organ donation studies have encountered and summarized in Table 1.…”

“…However, motivating and en- Box 2 Brief summary of empirical results from the before and after study and embedded process evaluation. 11,12 The big picture concerning consent rates…”

Online education about end‐of‐life care and the donation process after brain death and circulatory death. Can we influence perception and attitudes in critical care doctors? A prospective study

“…The impact of training on the attitudes and perceptions regarding different issues related to donation has previously been evaluated by some authors. However, the limited number of centres and participants included, the different profile of the surveyed population (students, nurses, or patients) and the diverse methodology used in such studies may not make results comparable to the present survey [10–12].…”

Seeking consent for organ donation: Process evaluation of implementing a new Specialist Requester nursing role

“…Specialist nurse positions in organ donation can be found in Spain (Miranda et al., 2003) the Netherlands (Jansen et al., 2011) and Australia (Lewis et al., 2015) and the UK. They are expected to have a diverse set of skills including; clinical, primary care, bereavement support, administrative, organizational and logistical experience (Noyes et al., 2019). The US has a hybrid model whereby any authorized person (including nurses) who has completed specialist training can legally approach about organ donation to a family whose relative has died.…”