Organ donor registration behaviour: Moving from opt in to opt out in England and impact on decision making in the Black African and Caribbean population.

Abstract

Introduction: In October 2017, England announced a public consultation to move from an ‘opt in’ organ donation registration system to a ‘soft opt out’ system. This became law on the 20 March 2020. Following this announcement there was a change in donor behaviour (an increase in opt ins and opt outs), particularly within the Asian and Black English population.

Aim: The aim of this study is to identify the drivers of behaviour related to organ donation registration within the English Black African and Black Caribbean population during a period of significant legislative change.

Methods: 12 self-identified Black African and Black Caribbean individuals who had registered a decision on donor register post announcement of the legislative change were recruited via purposeful and snowball sampling. 1-2-1 semi structured interviews were conducted, transcribed (verbatim) and analysed using Thematic Analysis.

Key Findings: Five main themes that contribute to behaviour and decision making in this group were identified: (1) Autonomy, (2) Altruism, (3) Religion and Beliefs, (4) Trust/Distrust and (5) Knowledge. These are interpreted using well-known behavioural theories (Theory of Reasoned Action, Planned Behaviour and Terror Management Theory). Control is highlighted as an important concept underpinning all five of the identified themes. The findings of this study offer a unique view from a historically unrepresented group in health care and social research as well as reinforcing limited existing literature on behaviours and decision making related to health within a Black population.

Implications: The findings of this research help understand the rationale behind decision making processes within a Black community and the role they play in organ donation registration behaviour. When supported by established behavioural theories they may be used to inform future healthcare polices, campaigns and training. Improving communication and engagement methods may lead to more Black organ donor registrations and donors which in turn, through matching of donors to patients waiting for a transplant, could lead to a reduction in waiting time to transplant for Black patients.

Keywords: Organ Donor Register, Opt in, Opt out, Black African, Black Caribbean, English, Behaviour, Decision Making.