Table 1 Themes and sub-themes per question
Question | Theme | Sub-theme | Example [ID] |
|---|---|---|---|
I am against the legislation – Can you help us understand why you are against this legislation? | Loss of autonomy | Informed consent | I do not believe that consent can be said to have been obtained just because someone hasn’t recorded their wish to opt-out. [R1908] |
Access | Personally I think it was easier when people carried organ donation cards and was a definite visual and personal choice. Not everyone has the access to the internet or is able to cope with technology in order to opt-out… [R958] | ||
Lack of awareness | I was unaware of these changes and I do not wish to donate my organs when I die. Not a lot of people will know about these changes and our choices will be taken away from us when we die. [R868] | ||
State ownership | I don’t believe the State should have default rights over a person’s organs upon their death. [R2055] | ||
Consequences | Mistakes | There may be people who forget to opt-out and their wishes then not carried out. [R2121] | |
Loss of trust | Don’t trust doctors in regards to organ donation. [R3010] | ||
Family distress | If the person did not decide to be an organ donor nor not to be, this will leave a huge burden on next of kin/family to make that decision. [R1652] | ||
Legislation | Evidence-base & rationale | Research shows that this measure doesn’t significantly improve “donation” rates. [R2493] | |
Organ choice | I feel you should have the right to pick what you want to donate. [R3936] | ||
Religion and culture | Bodily integrity | I would like my body to be treated with dignity and not to have any organs removed. [R1839] | |
Brain death | As a practicing Roman Catholic, it's wrong to take a person's life. Although a patient might be on life support with no hope of recovery, they are still alive at the point of organ retrieval. "Brain dead" is diagnosed even though the heart is still beating, therefore the patient is still alive. [R45] | ||
Against | Against my religion. [R5185] | ||
I need more information to decide – What information would you like to help you decide? | “Everything” | Family influence | How relatives are informed and how they can opt-out of it on behalf of their loved ones. [R459] |
Process(es) of donation | What is the process for having organs taken following death? Who needs to be consulted and what’s the procedure? [R200] | ||
Publicity | What has been communicated to the general public, and to our patients? As it seems totally lacking. People can't make an informed decision if they weren't informed. [R5377] | ||
Systems | Where are my details stored if I opt out and can mistakes be made in relation to my choices? [R1287] | ||
Evidence-base | Further understanding of the issue and the background to the change. [R2524] | ||
Have you discussed your decision with a family member? If no, can you help us understand what has stopped you discussing this with your family? | Priority and relevance | Autonomy | I decided to be an organ donor as it is my decision and didn’t feel the need to discuss it. [R482] |
Too difficult | It has just never come up in conversation and no-one likes to talk about death do they. [R3788] | ||
Agreement | The topic has not arisen but I am confident there would be no objections from my family. [R1898] | ||
No family | I'm a single parent and my children are too young to discuss this with. [R93] | ||
No decision | The topic hasn't come up in conversation and I am still undecided as to what I will do. [R1623] |