Appendix 1
The following list sets out a programme of UK
and European research into issues underpinning organ donation
and transplantation to be considered for urgent commissioning.
Family care drivern:
— A prospective, ethnographic observation
study needs to be carried out to further our understanding of
the minutiae of the dynamic interaction at the time of the approach
and discussion about organ donation, both in UK and cross Member
States.
— An exploratory study investigating
families' experiences of being asked about donation after cardiac
death.
— Large scale study of families who
refuse donation in UK recruiting from all 250 intensive care units
using Potential Donor Audit [may pick up ethnic minority groups].
— A comparison across Member States
about why families agree and deline donation.
— A study to tell us how we can honour
donors and their families both privately and publicly.
Health professionals driven:
— Health professionals across Member
States own knowledge, attitudes and organ donation behaviour—to
assess need for further education especially if working across
borders, will need a well informed work force.
— An exploratory study investigating
health professionals' experiences of donation after cardiac death.
— To investigate the culture of organ
and tissue donation within (x number) of NHS Hospital Trusts and
factors that influence the donation process [we must not forget
that there may be differences between the nations of the United
Kingdom].
Public awareness driven:
— More research is needed exploring
the "cultural" views of death and what is acceptable
in post death procedures. Comparative research from countries
across Europe would increase knowledge of reasons for refusal,
which research suggests is influenced by personal beliefs, values,
and interpretation of religious teachings and folk lore.
— Evaluation of an educational programme,
about organ donation, for school children in the first year of
secondary education.
— The role and influence of children
and young people on the donation discussion and decision-making
[the role of children and young people in the organ and tissue
decision-making process has been an unexpected finding of our
previous work. It has specific consequences for the provision
of information aimed specifically at children, the impact of children
on families' and health professionals' behaviour, and the bereavement
support needs of children].
Theoretical driven:
— The genesis of the beliefs that individuals
and families bring to the donation discussion has received scant
review. By eliciting these beliefs a greater understanding of
the barriers to organ and tissue donation could be established.
Identifying these beliefs may also further illuminate the concerns
raised by families in relation to the organ donation operation
and its association with any potential disfigurement of the deceased.
— Research designed to further enhance
the understanding of the complex processes underpinning donation
decision-making is urgently needed. In particular there is a need
to explore the importance of the "gift of life" and
"sacrifice" discourses to the decision-making process.
Such research should include those families who choose not to
donate as well as those who do. The extent to which timing of
information may influence whether the positive sense of the donation
process as a "gift of life" is more powerful than the
potentially negative construct of "sacrifice" also requires
examination. This calls for a qualitative study where these factors
can be discussed in detail with participants.
— Notions of what constitutes death
in the 21st century: The case of organ and tissue donation—a
project to explore health professionals' attitudes, beliefs and
knowledge about death declared by neurological criteria and non-heart
beating criteria. Targeted groups would be health care professionals
working in intensive care, accident and emergency, the ambulance
and rescue services.
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