Table 1 Summary of participant demographics and reactions to diagnosis
Pseudonym | Education (completed) | Current paid employment | Diagnosis | Age at dx (Yrs) | Doctor reaction | Participant reaction |
|---|---|---|---|---|---|---|
Leigh | Yr 11 (MS) | No | Dysgenesis | 53 | Dismissive. No knowledge. Doctor Googled in apt. Advised Leigh to keep silent about it. No information | Enraged, angry, frustrated |
Robin | Yr 12 (SES) | No | pACC | 16 | Advised parents that Robin couldn’t drive. No other information available | Shocked, Surprised, annoyed |
Claire | UG Deg | Yes | ACC | 18 | Doctor notified parents who told Claire. Ignored | Surprised, unsupported |
Ash | Yr 10 (MS) | No | pACC | 20 | Notified of a birth defect. No prior experience among treating doctors. No other information | Shocked, confused |
Shannon | UG Deg | Yes | pACC | 19 | Never seen it before. Dr Googled in apt. Told Shannon not to worry and nothing could be done about it | Detached, worried about possibly related issues |
Simon | UG Deg | Yes | pACC | 33 | No information available. Talk to GP | Vindication, an explanation, isolated |
Kim | Yr 11 (MS) | No | ACC | 40 | No information given | Shocked, alone, relief. Always knew something was wrong |
David | UG Deg | No | Hypogenesis | 61 | Plans to monitor corpus callosum changes. No other information | Curious and interested |