Table 3.
Illustrative quotations
| Theme | Illustrative quotations |
|---|---|
| Protecting family and community cohesiveness | |
| Respecting parental authority | I would say while my mum is alive and if I die first, I wish to do whatever to please her. So if she wants me in one piece, I'm in one piece. (FG5, woman, 20s) I think my family has a large influence on what I do and my decisions so I respect their opinion. What they think about what I do is very important to me and it always has been. So my mother being totally against it is probably the only reason I haven't really changed my mind about it as yet. (FG4, woman, 30s) |
| Intense emotionality | You've got to use emotions to get to the community. We're highly emotional people. (FG3, woman, 30s) |
| Avoiding taboo | It's a bit like jinxing yourself if you talk about death and what's going to happen, you might bring it on. So they don't want to talk about it. (FG6, woman, 50s) I can't even bring up the subject…you don't discuss it with your parents or your child because they will just go insane. (FG3, woman, 30s) |
| Fearing judgement | We live in an environment where you are not allowed to do this…that…no. No. No. No. If I do something bad everyone talks about me. The community, we are not individuals. If I do something wrong they put a black spot on me and say alright she is a so and so…and we don't accept organ donation. (FG1, woman, 50s) |
| Religious conviction | |
| Clarifying ambiguity | You have to be generous and help people out no matter what. But then it comes back to that grey area, saying ‘No. No. No. No. No.’ (FG3, woman, 30s) I'm going to go and ask my priest…I don't know if it's a sin or not to donate your body parts. Right? So there's a lot of things that aren't touched upon. (FG4, woman, 40s) |
| Adhering to religious requirements | From my belief, if you do something like that you would go straight to heaven. From my religion. (FG4, woman, 30s) Religiously, you're burying someone, in like Islam, straightaway. So for someone, for a culture that's big on making sure you're burying someone straightaway last funeral I went to was like, within hours of the person passing away. That is a barrier in itself. (FG5, man, 40s) |
| Invisibility of organ donation | |
| Proximity and direct relevance | I'm not aware of anyone in our little community, from our village and so forth, that has had a transplant, but if they had, I know, for a fact that everyone would rally around them and change their opinion. But I think because it's not an immediate threat to (my family), they're not really considering it—‘cause they only considering it from the giving perspective, not from the receiving perspective as well. (FG5, woman, 20s) |
| Lack of conceptual familiarity | They are not educated…Like my parents, like my dad didn't even go to high school. He doesn't know anything about organs. (FG2, woman, 20s) They just have to hear it over and over until it's normal ‘cause if you come up with someone that hasn't heard of that who is like, “Are you normal? What are you talking about? Why I wanna remove and organ from my family member? Yeah, I'm afraid of it.” (FG2, man, 20s) |
| Apathy for registration | A lot of people from our community don't vote. It's just like that. They don't wanna know about it and they don't do it. So I think this is very similar, like they're just not interested at all. (FG4, man, 30s) |
| Medical suspicion | |
| Visceral fear of organ removal | When I think of organ donation, I just think it's scary. I don't want to think about it. It scares me. (FG4, woman, 30s) |
| Wary about less effort to save donors | What if I'm not completely dead and they decide to save someone else's life and so they're making a decision about who to be saved. (FG6, woman, 50s) If they know you're an organ donor, and you're dying, they will make you die. (FG2, woman, 20s) |
| Losing body dignity | You become a nobody. From being someone with a name and shape, and stuff, you become just a number. Especially the idea of donating tissue is really scary ‘cause they chop everything and take the bones, and they put tubes inside you. (FG4, man, 40s) |
| Transferring historical scepticism | It happened in Lebanon where they took this guy…made him sign this paper saying, ‘In case you die, would you allow us to donate your organs?’ And he agreed…and what they did is they actually killed him. (FG5, man, 40s) We paid 25 000 dollars for my cousin's kidney in Lebanon. (FG3, man, 30s) |
| Questioning differential allocation | The worst part is you're doing it out of generosity, but actually there is someone who's a billionaire living out of you. Benefitting out of your parts. (FG4, man, 50s) I'm worried that somebody's gonna get hold of that register and there's gonna be some financial transactions, I think. (FG4, man, 40s) |
| Owning the decision | |
| Saving lives | If we can save others’ lives then why not? It's a beautiful thing. (FG3, man, 30s) I wanna donate…especially give a child sight or somebody a liver. That gives me so much pleasure to know that I would be doing that. (FG4, woman, 40s) |
| Gaining independence | I think the older generation have this really old view, but I think a lot of us, younger Lebanese, have moved away, broken away from tradition and we've become our own individuals now and we're raising kids Australianised, totally different to what our parents raised us. We're not as strict. We still have Lebanese values, but we love this country so we're trying to embrace it. So in my opinion, family's opinion does not count. (FG4, woman, 30s) |
| Anticipating family resistance | Even if I say yes, I would like to donate my organ…If I was to pass away and family was to take the decision, I'm sure mum's decision would stand. So really, I've got no say. (FG5, woman, 20s) |
| Reciprocal benefit | |
| The Arab community go, What's in it for me? That's the mentality thing…If someone in my family say, “I expect to get paid for this.” (FG5, man, 40s) I think there's just no motivation. Why should I put my mum's body through trauma although she's passed away, when really I don't even know what's gonna happen with her—that organ, do you know what I mean? I don't even know whether or not that is gonna be used. (FG5, woman, 20s) |
|
FG, focus group.