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Table 1 Below are a series of statements concerning your child’s skin disease, please answer as spontaneously as possible

From: Family burden in inherited ichthyosis: creation of a specific questionnaire

My child's skin disease has made us want to move. □definitely yes □maybe □definitely not □I don’t know
My child's skin disease has made me want to quit my job. □definitely yes □maybe □definitely not □I don’t know
My child's skin disease affects my sleep. □definitely yes □maybe □definitely not □I don’t know
My child's skin disease complicates our family life. □definitely yes □maybe □definitely not □I don’t know
I spend the day thinking about my child’s skin disease □definitely yes □maybe □definitely not □I don’t know
My child’s skin disease prevents us from going on vacation. □definitely yes □maybe □definitely not □I don’t know
My child needs more attention than other children because of his/her skin disease. □definitely yes □maybe □definitely not □I don’t know
Our child’s skin disease has forced us to rethink our plans for the future. □definitely yes □maybe □definitely not □I don’t know
Our child's skin disease causes us to neglect his/her brothers and sisters. □definitely yes □maybe □definitely not □I don’t know
My child’s skin disease prevents me from going to see my family. □definitely yes □maybe □definitely not □I don’t know
Because of my child’s skin disease, my family does not come to see us. □definitely yes □maybe □definitely not □I don’t know
Our child’s skin disease creates problems between me and my partner. □definitely yes □maybe □definitely not □I don’t know
I often feel frustrated after consultations related to our child’s skin disease. □definitely yes □maybe □definitely not □I don’t know
People's reactions to our child's skin disease are hard to accept. □definitely yes □maybe □definitely not □I don’t know
I feel guilty because of our child's skin disease. □definitely yes □maybe □definitely not □I don’t know
My child's skin disease has completely disrupted my life. □definitely yes □maybe □definitely not □I don’t know
I have not managed to accept our child's skin disease. □definitely yes □maybe □definitely not □I don’t know
I have a hard time getting used to the smell caused by our child's skin disease. □definitely yes □maybe □definitely not □I don’t know
Because of his/her skin disease, I have great difficulty finding someone to babysit my child. □definitely yes □maybe □definitely not □I don’t know
Because of his/her skin disease, my child has a lot of difficulties at school. □definitely yes □maybe □definitely not □I don’t know
Because of his/her skin disease, I fear for the future of my child. □definitely yes □maybe □definitely not □I don’t know
I'm growing tired of the daily care. □definitely yes □maybe □definitely not □I don’t know
I don’t feel well the day before I go to hospital. □definitely yes □maybe □definitely not □I don’t know
I don’t feel well the day after I go to hospital. □definitely yes □maybe □definitely not □I don’t know
The care I must provide to my child is extremely tiring. □definitely yes □maybe □definitely not □I don’t know
  1. There are no rights or wrongs answers, only your answer. Thank you for your participation.