Increasing organ donation via anticipated regret: the INORDAR project

Plain English summary of protocol

Background and study aims
There is an insufficient supply of donor organs to meet the demand for organ transplantations worldwide. The NHS Blood and Transplant (NHSBT) Annual Report 2009-2010 found that 90% of the UK general public approve of organ donation. Despite this, only 30% of people in the UK (37% in Scotland) have registered as posthumous organ donors. The 2011 Nuffield Council on Bioethics suggested that registration may be increased if people received financial incentives, such as the NHS paying for their funeral. Although such incentives may encourage people to register, the key to drastically increasing registration is to identify and overcome the psychological barriers that prevent organ donation and to determine what can promote organ donor registration.
The Theory of Planned Behaviour (TPB) suggests that people are likely to register as an organ donor when they have a positive view of registration, believe that they are able to achieve this and think that friends and family support registration. However, research in the USA and the UK suggests that emotions and attitudes are stronger predictors of organ donor registration than traditional TPB variables. These can include feeling disgust towards organ donation and believing that registration will harm the registrant. This suggests that donor registration interventions should target the emotions that guide decision making. We plan to focus on the emotion of regret.
Regret is an emotion that is experienced when people believe that they should have acted differently. It is possible to anticipate the amount of regret that one would feel if they did not perform an action. The desire to avoid this emotion motivates people to undertake an action when they anticipate feeling regret for not acting. Anticipated regret therefore binds people to actions by signalling the emotional consequences of inaction.
In two initial studies, it was found that people had greater intentions to register as an organ donor after being asked whether they would later regret not registering than the control arm (not being asked whether they would later have regrets). These studies demonstrate that anticipated regret increases people’s intentions to register as an organ donor. However, people do not always act upon their intentions. In a further study it was found that anticipated regret increased people'’s self-reported registration as an organ donor. The aim of the study is to test whether asking people whether they would later regret not registering as an organ donor increases registration.

Who can participate?
A large, nationally representative sample of the adult Scottish general public will be recruited via post. Participants will be randomly selected from a list containing 1.2 million members of the adult Scottish general public and invited to complete and return a brief questionnaire. Participants will be 18 years or older and will not be registered organ donors.

What does the study involve?
The materials that the participant receives depend on which of the four groups they have been randomly allocated into. The no questionnaire control group (NQC) simply receive a letter and donor registration form. The questionnaire control (QC) group receive a questionnaire measuring their emotions and attitudes towards organ donation. Non-donors also rate their intentions to register as a donor. The attitudes questionnaire (AQ) group receive these questions, plus items assessing attitudes, perceived control, and subjective norms. The anticipated regret (AR) group complete all of these questions, plus two additional items assessing whether they would later regret not registering as a donor. NHSBT-verified organ donor registration is measured 6 months after our postal intervention: NHSBT search the Organ Donor Register to determine whether the participant has become a registered organ donor and, if applicable, when they registered.

What are the potential benefits and risks of participating?
Distributing donor registration forms is likely to increase the population's supply of posthumous organ donors. This may benefit any participants (or their loved ones) who may need an organ in the future. This study may also benefit participants by evoking the positive feelings associated with organ donor registration. Finally, receiving the form may stimulate people who have been considering registration to take that step. No risks are anticipated.

Where is study run from?
University of Stirling (UK)

When is the study starting and how long is it expected to run for?
January 2012 to December 2012

Who is funding the study?
Chief Scientist Office of the Scottish Executive Health Department (UK)

Who is the main contact?
Prof. Ronan E O’Carroll
reo1@stir.ac.uk

Study website

Contact information

Study information

Eligibility

Locations

Countries of recruitment

• Scotland
• United Kingdom

Study participating centre

Sponsor information

University of Stirling (UK)
University/education

c/o Ms Carol Johnstone
Stirling
FK9 4LA
Scotland
United Kingdom

Website	http://www.stir.ac.uk/
"ROR"	https://ror.org/045wgfr59

Funders

Funder type

Government

Results and Publications

Study outputs

Editorial Notes

10/06/2016: Publication reference added.
18/03/2016: The recruitment dates have been updated from 02/01/2012 - 21/12/2012 to 01/04/2012 - 30/04/2012.
15/03/2016: Publication reference added.