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 |