TABLE 5.
Quotes illustrating participant responses about sharing results.
| Responses related to being willing to share results | |
|---|---|
| So my loved ones could support me or we could prepare for my possible future AD |
So I don't have to carry the burden by myself. (Participant 395, 63yo White female) Because I would want them to know so we could set up some kind of a plan or routine so we would kind of have an idea what is going on…would try to plan out whatever I could in terms of finance and health and arrangements so they would know what I wanted. (Participant 061, 65yo Black/African American Female) |
| Because I am in a trusting and honest relationship with my loved ones |
I would see that as the same as any other medical condition, I'd share it with my husband and children. (Participant 191, 72year old (yo) Black/African American female) I don't think it would affect our relationship, it wouldn't be any different than it is now. (Participant 334, 68yo White female) |
| So loved ones could monitor for or understand potential behavior changes |
So they could watch for signs and symptoms. (Participant 052, 59yo White Female) I see no reason to keep it a secret, it is what it is and those are the cards that have been dealt, this is the reason I might be acting differently instead of them wondering why I am acting differently. (Participant 207, 62yo White male) |
| Because my loved ones may be impacted by the results, or I feel they should know |
Because they have the right to know, because it will affect them as well, being around me and knowing what to expect. (197, 58yo Black/African American Female) For their benefit, not mine, so that they can deal with it, for what's coming. (Participant 238, 63yo White female) |
| So family members understand their family history or risk for AD |
So those who are biologically related can also make a decision to learn about their risk. (083, 59yo Black/African American female) I would like them to then do things that might prevent them from getting the disease. (Participant 110, 65yo White female) |
| Responses related to being somewhat willing or uncertain about sharing results | |
| I would be selective in whom or what to share |
To answer that question, if my wife is the loved one, I'd tell my wife, but other loved ones, might not. Loved ones is a broad term. I don't know who falls under that term. I have kids, grandkids, they're all loved ones, but I don't know that I'd tell everybody. (Participant 360, 66yo White male) Particularly my husband. He'd be a caregiver. He needs to know and wants to know. I don't know about my kids. I would tell them but maybe not in as great a detail as him. (Participant 152, 67yo Black/African American female) |
| Because I would want more information before sharing | Just until there would be further clarification or understanding of what the explanation would be, whether they would be able to know what I am telling them, that it is a serious diagnosis or whether it's not as much a serious concern. (Participant 392, 73yo White female) |
| Because of uncertainty about prognosis | Because it's not really definitive as to whether or not I would get it. It means I'm at a higher risk, but that doesn't mean I would develop it. (Participant 106, 60yo White female) |
| Responses related to being unwilling to share results | |
| To not worry or upset loved ones |
I would not want them to worry and to be looking for symptoms. (Participant 298, 73yo White female) I would feel that I couldn't offer any solutions in terms of getting better. There is no medicine and I have this terrible disease and I'd have no way to escape, no treatment, nothing positive. (Participant 007, 84yo Black/African American female) |
| Because I am worried about stigma |
I wouldn't want them to know and them to treat me differently. (Participant 073, 68yo Black/African American male) I would want to try live my life as normal as possible. Once they find out they would begin to treat me differently. (189, 63yo Black/African American female) |
| To preserve privacy of my health information | It isn't any of their business. (Participant 286, 61yo Black/African American male) |