Table 3.
Categories of free-text comments regarding preference for Letter 1 or Letter 2.
| Category | n (%) | Example quote/s | ||
|---|---|---|---|---|
| Which letter would you prefer? [free text] | Letter 1 (n = 35) | The initial letter should not have too much detailed information/the right not to know | 12 (34.3) | “I do like that the first letter holds back the information unless you request it. Receiving a letter like the second could create anxiety and panic amongst some people. And they’d misinterpret the meaning of the letter.” (ID 770, M, 37 y) |
| “I think some people want to decide for themselves if they want to find out about possible genetic conditions and should be able to choose if they find out or not” (ID 430, F, 31 y) | ||||
| Easier to understand | 9 (25.7) | “Letter one is easier to understand and felt warmer” (ID 317, F, 28 y) | ||
| Suspicion about source | 6 (17.1) | “With the way Letter 2 started off, ‘I am a medical specialist…’ felt very fake. I would feel suspicious” (ID, 288, F, 22 y) | ||
| More information required | 3 (8.6) | “I think maybe a statement if it was an urgent request or the level of seriousness to take this letter with so you know if it’s an urgent matter and don’t panic if it’s not necessary.” (ID 408, F, 33 y) | ||
| Both letters acceptable | 3 (8.6) | “Both are great, nothing need [sic] to change” (ID 955, F, 40 y) | ||
| Positive/grateful for the opportunity | 2 (5.7) | “I liked how they at least notified me about such a problem - it’s better to know of this than to not know at all.” (ID 626, M, 41 y) | ||
| Letter 2 (n = 144) | This letter was more informative/impresses the urgency of situation | 74 (51.4) | “After reading the first letter I thought I would feel overwhelmed by more information, however the 2nd letter had just the right amount of information to not feel overwhelmed, but know what may happen and what we could do about it.” (ID 618, M, 43 y) | |
| “Definitely would prefer to receive the 2nd letter as this would impress on me the immediacy of the situation therefore potentially saving my life or the very least buy me more time” (ID 548, F, 63 y) | ||||
| Both letters acceptable | 19 (13.2) | “I feel that the penmanship of both letters is of an acceptable standard and no issues understanding it. But letter no.2 definitely is the superior version.” (ID 575, M, 40 y) | ||
| More information required about the condition/ relative | 15 (10.4) | “I found that they should’ve put more information about the genetic condition as some people aren’t tech savvy and might not be able to research the certain disease” (ID 374, F, 22 y) | ||
| “In the letter it needs to state the relative’s name, otherwise it would be taken as a scam.” (ID 1059, F, 51 y) | ||||
| Positive/grateful for the opportunity | 13 (9.0) | “I really liked it. I think that if the family member didn’t have my contact details, I would be disappointed that it could go missed.” (ID 177, F, 30 y) | ||
| Letter was easy to follow | 9 (6.3) | “It was communicated so that anyone can understand it” (ID 951, F, 36 y) | ||
| Prefer not to be contacted this way/would want to hear from the relative | 7 (4.9) | “I would have preferred to have not received any letter at all. If I was to be informed, I would prefer to have a face to face conversation with whoever has the information…. I prefer not to know about maybe’s. I would deal with situation when it or if it arises.” (ID 801, M, 71 y) | ||
| “I would have expected my relative to advise me about their situation and expect to be contacted by letter later on” (ID 698, M, 70 y) | ||||
| Suspicion about source | 5 (3.5) | “I would want to know who the specialist is & their qualifications eg Prof Jones PHD, MD etc. It reads like a chain letter saying the person is a specialist and may not be taken seriously.” (ID 945, F, 61 y) | ||
| Tone could be softened | 2 (1.4) | “The first letter was too vague and the second was considerably better although the second letter would be improved if it had a more sympathetic tone” (ID 144, F, 20 y) | ||
| No preference (n = 18) | Both letters acceptable | 5 (27.8) | “I thought they were both great and I would be happy to receive either” (ID 1051, F, 36 y) | |
| Privacy concerns | 5 (27.8) | “I would be very uncomfortable receiving such a letter and I would complain to the people who send it in the first place as well as tell my relative off for passing on my information. Both intrusive parties here have no right to do either.” (ID 1022, F, 53 y) | ||
| Prefer not to be contacted this way/would want to hear from the relative | 4 (22.2) | “Would not like to get this letter then get anxious thinking about something that may not even happen” (ID 156, F, 32 y) | ||
| “I would prefer to be told directly from the relative rather that the first indication being a letter received out of the blue.” (ID 625, M, 53 y) | ||||
| Suspicion about source | 3 (16.7) | “I just can’t imagine I would take it seriously if it really did arrive out of the blue.” (ID 164, F, 27 y) | ||
| More information required | 1 (5.6) | “Including the name who was tested for the gene would have helped.” (ID 418, F, 22 y) |