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Study to probe Australia’s low organ donation rate

National research will inform how nurses communicate to families about organ donation.

Every year roughly half of Australian families turn down the opportunity to donate the organs of their loved ones. In new research, registered nurse and university researcher, Holly Northam will investigate the reasons why.

The University of Canberra study will document the experiences of seven families who have confronted the decision of organ donation within the past three years.

Northam said current national policy changes to help boost organ donation were not informed by quality, contemporary research about how best to support bereaved families.

“At the moment we have a lot of money being put into improving organ donation rates. We have doctors and nurses who are being employed especially in hospitals to work with families, and yet they are not being guided by research in Australia at all, as to how they should approach families,” she told Nursing Review.

In Australia, some 250 families each year agree to organ donation and a similar number decline. However, this 50 per cent rejection rate is in stark contrast to the 90 per cent of Australians who express support for organ donation in community surveys. Australia has also lagged significantly behind other countries, such as Spain and parts of the US, which achieve consent rates of up to 85 per cent.

While organ donation was a difficult decision often made during a time of crisis, Northam said there appeared to be a general problem in the way health professionals in Australia dealt with the subject.

“We know people are in crisis and their information needs are often not met but despite this fact, internationally, we can get up to 85 per cent of families who still agree to organ donation. So that’s not a good enough excuse for Australia’s low incidence of donation. There has to be something that we are not doing as well as we could be, and I suspect it’s around the way we manage our relationships with families - including the way we support their emotional needs and the information we provide to them.”

Northam said that skilled compassionate care and accurate information were paramount to help families make a fully informed decision.

National changes implemented across Australia from 2008 have boosted the number of specialist hospital staff to help raise community awareness about organ donation.

The PhD research is expected to inform the way nurses and doctors communicate with families to improve care in a critical care environment and may lead to higher organ donation rates in the future, she said.

Northam said previous research had tended to exclude the voice of families or focused on why they agreed to organ donation rather than why they declined.

“A lot of the material that we work from in policy and from guidelines in the health environment is based on perceptions of medical and nursing staff as to why the family made a decision, but they don’t actually ask the family, so it’s really important that families actually have a voice in this,” she said.

Given the selection criteria – families who have declined organ donation in the past three years - only approximately 600 families across the nation would be eligible to participate. Northam likened the challenge to “finding a needle in a haystack”, but said she would persist with this important gap in existing research.

She was also concerned that some families might be reluctant to come forward because of feelings of guilt or regret from having said no to organ donation.

“I’m very conscious that I don’t want them to feel like they have made the wrong decision. I want them to talk about their decision without feeling guilty.”

As part of the research, families will participate in confidential interviews to survey them about their experience.

“To influence change among health professionals we actually need families to say what support they want from us because a family voice is much stronger and much more powerful.”

Northam is Assistant Professor of Critical Care Nursing at the University of Canberra and has specialised in the area of organ and tissue donation over the past 10 years when she worked as an Organ and Tissue Donor Coordinator for ACT health.

For further information or to take part in the study contact: [email protected] or 02 6201 2135.

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