From: Parental coping with uncertainties along the severe combined immunodeficiency journey
N = 26 N (%) | |
---|---|
Relationship to child | |
Mother | 21 (81%) |
Father | 5 (19%) |
Child’s age mean (months) | 4.5 |
Child’s type of SCID | |
ADA | 3 (12%) |
Artemis | 1 (4%) |
Ataxia telangiectasia | 1 (4%) |
Complete DiGeorge | 1 (4%) |
DiGeorge syndrome | 1 (4%) |
IL2RG | 10 (38%) |
IL7R | 1 (4%) |
Nijmegen breakage syndrome | 1 (4%) |
RAG1 | 1 (4%) |
RAG1/Omenn’s | 1 (4%) |
Unknown SCID | 4 (15%) |
Awaiting results | 1 (15%) |
Child’s journey stage | |
Diagnosis | 0 |
Pre-treatment | 4 (15%) |
New normal/pre-treatment | 2 (8%) |
Post-treatment | 1 (4%) |
New normal/post-treatment | 4 (15%) |
New normal | 15 (58%) |