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. 2018 Aug 24;13(8):e0202544. doi: 10.1371/journal.pone.0202544

Table 2. Illustration of the relation between main categories, categories and subcategories.

Main categories Categories Subcategories Exemplifying quote
The occurrence of death Time point for death according to donor relatives - Immediately when collapsing
- During determination of brain
death
- Formally informed about death
- At donation request
- During donor operation
- When the heart stopped beating
. . .I sat there by the ambulance and then I kind of understood, oh…is it this bad… Because I saw that it was just, that she wasn’t there so to say. No, I think that she was dead already then.
Uncertain / Contradictory:
- Staff communication with dying and
dead patient
- Vague information about death
- Psychological difficulties accepting death
She didn’t say it explicitly–dead–but that there was no reaction up here in the brain. And then one can figure out that it must be something like that.
Mistrust regarding declaration of death - Insufficient skills “…what if they didn’t do it correctly. One has read, sometimes one reads about things…”
From life sustaining to organ preserving interventions Ventilator treatment after death - Kept patient alive
- Maintained though no hope
- Maintained even though dead
- Maintained after death for the
sake of the organs
- Maintained to provide oxygen to
the organs
- Prolonged to enable organ
donation
“He was alive thanks to the machines, so without the machines he would have died and then they cannot pick anything from him.
Other medical interventions given and preparations made in order to maintain organ viability - Plenty of preparations
- Fluids
“…they give fluids and various other things to keep the organs fresh”.
Suspicion of less good medical treatment - Now we have a chance
- Did not give 100 percent
- A done deal
“Look, here we have a chance, we might not be able to save him…”
The donor operation Information about the operation beforehand Unspecific information:
- Vague information from staff
- Received no information
- Cannot recall any information
- Were informed but remember little
- Didn’t want information
- Reluctance to discuss- Specific surgeons
“No they did not tell me anything, I mean, it is their thing…”
Specific information:
- Related to the organs
- Specific surgeons
- Logistic planning
“Well, she told us which organs one can use, cornea and…”
The surgical procedure - Positive/Respectful
- Neutral/Distanced
- Negative/Uneasiness
“It is just like a, ehh, surgery. So they treat you like in any surgery… well like in any operation. With respect as well…”
The state of the body after the operation - Positive
- Neutral
- Negative
“… that they were going to use the eyes sounded a bit nasty. But when we later took farewell of her one could not notice it at all. She looked so nice…”“… that they were going to use the eyes sounded a bit nasty. But when we later took farewell of her one could not notice it at all. She looked so nice…”
The donor relatives’ own decision-making process Directly affected by their dead family member’s donation Positively influenced:
- Gained knowledge
- Inspired by outcome of the
donation
- Proud of deceased family members’
donation
And then they told me that they make a decision on a case-by-case basis. So, you don’t have to be too old at all, but that was what I thought before.
Negatively influenced:
- Treatment mistakes
- Media exposure
”…It was a young doctor and he fiddled with the drainage soNo there were so many mistakes…”
Mind made up long time ago Willing:
- Willingness to help others
- Right thing to do
- Organ shortage
- Employment in medical health care
“Well, I want to help if I can…”
Unwilling:
- Fear not dead
- Buried according to old traditions
“I’m too old you know, and I come from the country side… I just want to be buried whole according to old traditions.