Maud Hevink

| 120 Fears were also expressed regarding the social impact of the diagnosis, including the potential impact on family members. Participant: ‘Exactly, and I mean, at this stage of the game, I reckon that she was probably thinking, OK, those two daughters of mine, how does this affect them, and I can tell you that nobody would have said anything to her about this gene, so she wouldn’t have thought about that’. Australia, Participant 4 The photo elicitation technique also supported participants to reflect on the possibility of more positive and resilient responses to the diagnosis. Interviewer: ‘We move a few weeks later, that is, [Thelma] received the diagnosis a few weeks ago and we wonder what happened during that time from that visit, during those few weeks, what happened? What was she doing then? What could she be thinking? What to feel’? Participant: ‘So, I am already in this state, so I compare my behaviour, remember what I used to be …, but it does not break me down, I know age needs it, otherwise a person would not die, s/he would not die, a person must run out.’ Poland, Participant 10 In addition, they were useful to prompt the importance of the doctor’s approach to supporting acceptance. Interviewer: ‘What could a doctor do? What role could the physician play in the beginning in making a diagnosis?’ Participant: ‘Well, it is not to break down right away when he makes a diagnosis. Just like I can see, after all, like my professor, who very gently, kindly ... just like we did diagnostics, checking the mind, efficiency and all ... well, I would like to, well, I’m not afraid, I know, I realise, that a person is not so mentally efficient all his life, there are exceptions, there are people who somehow work their brains all the time, they think - well, that’s positive, it’s good.’ Poland, Participant 10 One researcher noted some initial concerns over the intention of the techniques to trigger personal and emotional responses. However, these worries were not realised, and whilst this researcher experienced one participant crying during the interview, they found the response was manageable with support, and the participant expressed a clear desire to continue with the research. Participant: ‘I decided it is what it is, and I might as well go through it the best as I can [crying] I’m sorry.’

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