Organ and tissue donation: baseline report 2021

Workforce

Evaluation Questions:

4. What are NHS staff members' views on, understanding and awareness of the new opt-out system?

5. What are NHS staff's views on the NHS organ and tissue donation system, and donation as part of end-of-life care?

6. How can successful early identification and referral of potential donors, and successful authorisation processes best be supported? What supports a reduction in missed donation opportunities? What are barriers to the successful realisation of these aims?

7. What are key areas that training should target to raise awareness and knowledge of, and support for tissue and organ donation, and the opt-out system among NHS staff involved in donation processes?

Qualitative Research with NHS Staff

This project sought the views of NHS staff involved in donation. Data was gathered on their views on donation generally, the move to a deemed authorisation system specifically, and what could help ensure it is a success. 28 one-to-one interviews and 9 focus groups were conducted with 63 NHS staff involved in organ and tissue donation across Scotland between October 2019 and January 2020. Interviews and focus groups were conducted in person by the Evaluation Project Lead, Lilian Kennedy, PhD, Scottish Government Researcher Officer, on or near NHS sites to create as minimal inconvenience to NHS staff as possible. It is important to note that the majority of interviews and focus groups were conducted with staff working within ICU settings. The findings of this research are published in the report 'Qualitative Research with NHS Staff involved in Donation: October 2019 - January 2020.'

Staff group types represented in the study include:

• 8 CLODs (Clinical Leads for Organ Donation)
• 10 SNODs (Specialist Nurses for Organ Donation),
• 23 ICU (Intensive Care) consultants
• 15 ICU nurses
• 3 ED (Emergency Department) consultants and nurses
• 4 TDCs (Tissue Donor Coordinators)

A qualitative approach was used to gain insight into contextual factors underpinning the range of views expressed by interviewees. A full discussion of the methodological approach can be found in the stand-alone report.

A series of research questions underscored the qualitative project:

• 1. What are NHS staff members' views on, understanding and awareness of the new opt-out authorisation system?
• 2. What are NHS staff's views on the NHS organ and tissue donation system, and donation as part of end-of-life care?
• 3. How can successful early identification and referral of potential donors, and successful authorisation processes best be supported? What supports a reduction in missed donation opportunities? What are barriers to the successful realisation of these aims?
• 4. What are key areas that trainings should target to raise awareness and knowledge of, and support for tissue and organ donation, and opt-out authorisation among NHS staff?

Key Findings:

• Most NHS staff interviewed were supportive of the move to an opt-out donation system, though a majority did not predict that the change would dramatically increase authorisation or donation rates. Instead, most felt that the law change would support current practices, which were described as in line with the goals and practices inherent in an opt-out system. Many felt confident that current practices allow for the facilitation of as many appropriate authorisations of donation and organ and tissue donations possible. ICU staff members in particular illustrate that they were largely "not worried" about the move to an opt-out authorisation system.

• By majority, the NHS staff members interviewed were very supportive of organ and tissue donation generally, while also recognising that donation is a challenging experience for all involved. Across the different staff groups, support for donation was grounded in the views that:
  • Organ and tissue donation can positively impact donor families' lives.
  • Patient choice is supported with donation as a standardised option in end-of-life care.
  • Supporting a patient's choice to pursue donation can save, or improve, the life of a transplant recipient.

• By majority, NHS staff members felt that the implementation of the Act could bring about positive impacts to the donation system in Scotland. Staff grounded their support in the views that:
  • The legislation's publicity campaign could positively raise the profile of donation generally, and tissue donation more specifically.
  • Publicity of the law change could prompt more people to register their wishes on the Organ Donor Register, which could make conversations about donation with a patient's family easier.

• NHS staff members also highlighted difficult aspects of donation and concerns about the implementation of an opt-out system. The main topics raised were:
  • Some NHS staff have concerns that potential donors and their families lack understanding about what donation entails, in that the donation process can be an emotionally exhausting experience for patients' families.
  • Many staff were clear that a high priority in the move to a deemed authorisation system is maintaining patient and patient family trust in the NHS and donation processes.
  • Some staff were concerned that a deemed authorisation will diminish the voluntary 'gift' connotation of donation.
  • A small number of staff worried that implementation of an opt-out system could be counter-productive to aims of increasing donation numbers for reasons centring on members of the public feeling pressured to donate and so acting in the opposite way.

• Staff felt that successful early identification and referral of potential donors, and successful authorisation processes can best be supported in a number of ways:
  • Greater visibility of Specialist Nurses for Organ Donation (SNODs)^[8] and Clinical Leads for Organ Donation (CLODs)^[9].
  • Good relationship between a SNOD and clinical staff in charge of patients and who speak with patient families.
  • Consultants feeling that the rapport they have built with families is appreciated by SNODs as donation processes progress.
  • Increased and earlier education of staff involved in ICU (Intensive Care Unit) and ED (Emergency Department) settings about donation, such as within NHS sites via SNOD/CLOD/TDC activities and within medical training of younger consultants.
  • The experience of being a part of a 'successful donation' process can buoy staff confidence.
  • Getting positive feedback from NHSBT (NHS Blood and Tissue) about practice, such as rates of missed opportunities to refer to SNODs and letters from donor and transplant families.

• NHS staff identified key items to address in trainings/events aimed at NHS staff about the law change^[10]. These key items included;
  • Clarification of the legal stipulation of 'deemed authorisation'.
  • A number of staff expressed an interest in about learning about the key messages in the public marketing campaign.
  • Consultants, in particular ICU consultants, were interested in ways in which more communication between ICUs could be supported so that 'best practices' and 'problem solving' techniques regarding donation developed within different health boards/other sites could be shared across different teams.
  • A large number of consultants suggested that signposting that 'SNODs are the experts – it's best to always refer to them when in doubt' alongside case studies where working with SNODs has proved beneficial would be helpful in creating consistent inclusion of SNODs across sites. In line with this, a smaller number of consultants requested clarification about research showing that SNODs 'in the room' during end-of-life conversations correlates with higher authorisation rates, as a few mentioned conflicting evidence on this finding.
  • Consultants hoped for greater clarity on 'duty to inquire'^[11] stipulations, expressing varying levels of confidence in their understanding of what this practice entailed and how it would affect families in practice. Some staff suggested the inclusion of a different 'duty to inquire' scenarios in the training sessions to remain confident that families' wishes would be taken into account in authorisation conversations, and that trust in the ICU/NHS would not be damaged by deemed authorisation conversations.
  • ED and ICU consultants and nurses also highlighted the need for greater awareness raising of tissue donation among ED staff, with 'clear, simple guidelines about how to speak with families' of the recently deceased to increase ED staff's confidence in raising this topic.

NHS Staff Training Confidence Survey data

In order to ensure that all operational staff required to work within the legislation are knowledgeable about the Act and its respective changes to practice, a programme of training and materials has been provided to ensure compliance and confidence with new legislative requirements. In light of COVID-19, all trainings with NHS staff were conducted online, unless it was deemed necessary for the training to be conducted in-person. Roll-out of training began September 2020 and includes an on-going online learning tool.

These training sessions and training tools include:

Training Activity:
Masterclass 1

Staff Group targeted
All NHS Scotland staff with roles impacted by the new legislation

Training period
Delivered between 22 September and 30 October 2020

Training Activity:
Masterclass 2

Staff Group targeted
NHSBT Scottish and SNBTS donation services teams, specifically SNODs and TDCs

Training period
Delivered between 6 Nov and 24 Nov 2020

Training Activity:
Masterclass 3

Staff Group targeted

NHSBT Scottish and SNBTS donation services teams, specifically SNODs and TDCs

Training period
Delivered between 12 Jan 2021 and 1 Feb 2021

Training Activity:
Development and roll-out of an E-learning tool

Staff Group targeted
All NHS staff involved in organ donation or organ and tissue retrieval UK wide

Training period
Formally launched: 20 Jan 2021
(Rolled out informally: Dec 2020)

Training Activity: Turas^[12] site

Staff Group targeted
All NHS staff involved in organ donation or organ and tissue retrieval UK wide, as well as NHS staff UK wide who have an interest in the topic area.

Training period
Launched: January 2021.
Availability is ongoing

In order to evaluate the impact of the Masterclass 1 (MC1) training sessions, pre and post training online survey questionnaires were administered via Questback to measure changes in reported confidence levels around key areas of practice as they relate to the Act, as well as key learnings sought by and gained through the training sessions.

The Key areas of practice measured were:

• "Understanding of the new legislation"
• "Explaining the changes to an opt-out authorisation system to fellow colleagues"
• "Following the correct procedures to ensure new legislative requirements are followed"
• "Understanding of the changes being made around Pre Death Procedures (PDPs) in the Human Tissue (Authorisation) (Scotland) Act 2019"
• "Explaining Pre-Death Procedures (PDPs) to peers"
• "Explaining the changes in legislation to patients and patient families"

By the end of March 2021, 233 pre-questionnaire responses were received, and 170 responses were received for the post-questionnaire. Drop-off in response rates from pre- and post- surveys is not uncommon, and the reason for the drop-off in different contexts is not a set, or known, variable. Due to the discrepancy between pre- and post-questionnaire responses, there is a potential bias in the findings.

Figure 2 illustrates confidence level changes from pre-training to post-training, demonstrating key findings of the survey:

• Reported confidence levels rose in all areas of practice from pre-training levels.
• The most marked increases in confidence levels were in areas of practice related to understanding changes in and explaining Pre-Death Procedures.
• Prior to training there were gaps in confidence related to Pre-Death Procedures. After training, no gaps remained, and all areas of understanding were similarly robust.

NHSBT conducted post evaluations for the Masterclass 2 and Masterclass 3 training sessions. The key findings from these evaluations show:

Masterclass 2:

NHSBT measured the perceived impact of the Masterclass 2 training course on knowledge and understanding of the legislation change, as well as confidence levels across a range of key areas, shown in Figure 3. 25 staff members responded, which included Team Managers, SNODs, SNOD Specialist Requesters, and Tissue Donor Coordinators.

In response to the statement 'The course has built on my knowledge, increasing my understanding of the Legislation change and what this means to me in practice', 21 out of 25 respondents reported 'Extremely true', and the remaining four reported 'Somewhat true.'

Masterclass 3

21 staff members responded, which included Team Managers, SNODs, and Specialist Requesters. Responses are illustrated in Figure 4.

On average, 4.71 stars out of 5 stars were given for the training.