Children with disabilities and qualifier-level wording

The children and their parents were followed clinically from diagnosis and intentionally including 16 years of age at the Department of Child Neurology, H. C. Andersen Children’s Hospital, Odense University Hospital. Parents of children with spina bifida, spinal muscular atrophy, muscular disorders, cerebral palsy, visual impairment, hearing impairment, mental disability, and disabilities following treatment for brain tumours were visited from 2010 to 2011 and interviewed in their own homes. Apart from parents to children that had reached 17 years of age or had died, the same parents were again contacted twice more by letter and asked to score their children’s disability on 26 selected codes with topics related to daily living from early morning until night, and qualifiers were worded in the same way as previously used⁴:

Child’s ability is as expected for his or her age.

Child has difficulties, but functioning is still in the expected range for his or her age.

Child needs help from another person with functions, activities, and participation.

Child needs help and care; the child has only limited ability with respect to body functions, activities, and participation.

Child is totally dependent on others for body functions, activities, and participation.

If the parents considered their children too young for a given task, they scored a 1, and if a task was too difficult despite being age appropriate, they scored a 5. For example, children with severe mental retardation irrespective of cause might not have school performance considered despite of age and had score 5. This approximation was done solely to keep data as simple as possible to handle.

The codes adopted were all second-level (out of 4) ICF-CY codes and were expressed in more general terms. They are presented in Table 1.

The 26 ICF-CY codes selected were all second-level (out of 4) codes.

Codes are listed in the order they were presented in the questionnaire. Codes used in our previous 2015 study are underlined. Supplementary wording was provided to help parents understand the meaning of the codes.