Table 1 Questionnaires.
Common questionnaire for all respondents | |
Q1 | Name, relationship, and age of respondent |
Q2 | Name, sex, birth order, age, diagnosis, and age of diagnosis of child |
Q3 | Whether parents disclosed information or not If yes, move to questionnaire I If no, move to questionnaire II |
Questionnaire I. For respondents who had disclosed information to their affected children | |
Q1 | The age of the child at disclosure |
Q2 | Who primarily carried out the disclosure? |
Q3 | Who was present other than the above persons? |
Q4 | Reasons for disclosure |
Q5 | Details and important points when disclosing |
Q6 | Whether or not the genetic condition was discussed after disclosure |
Q7 | Information that was helpful for disclosure |
Q8 | How did you feel after the disclosure?a |
Q9 | Number of siblings of the child with a genetic condition |
Q10 | Whether parents disclosed information about genetic conditions to the siblings or not |
Q11 | The age of siblings at disclosure, who primarily carried out the disclosure, who was present, reasons, details, and important points when disclosing |
Q12 | Whether or not the genetic condition was discussed with the siblings after disclosure |
Q13 | Will you disclose to the siblings later, if you haven’t yet? |
Q14 | When will you disclose to the siblings? |
Q15 | Your plan to disclose to the siblings: age at disclosure, who will primarily carry out the disclosure, who will be present, reasons, details, and important points when disclosing |
Questionnaire II. For responders who had not disclosed information to affected children | |
Q1 | Reasons for avoiding disclosure |
Q2 | Whether or not you will disclose information in the future |
Q3 | If you plan on disclosing in the future: the age at disclosure, who will primarily carry out the disclosure, who will be present, reasons, details, and important points when disclosing |
Q4 | Number of siblings of the child with a genetic condition |
Q5 | Whether parents disclosed information about genetic conditions to siblings or not |
Q6 | The age of siblings at disclosure, who primarily carried out the disclosure, who was present, reasons, details, and important points when disclosing, OR your plan to disclose information to the siblings |
