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Table 2 Themes and sub-themes extracted from content analysis

From: Parents’ perception of challenges of caring of children with Epidermolysis bullosa: a qualitative study

Invasion of psychological crisis

▪ Disappointment and Depression

▪ Motherly affection and hidden grief

▪ Fear of the future

▪ Shock of euthanasia and child death

Alive but not living

▪ Exhausting care

▪ Limited social interactions

▪ Regret of true smile

Comprehensive support

▪ Information Support

▪ Emotional support

▪ Financial support by charities