Objective: To inventory the problems encountered by parents of girls with Turner's syndrome.
Design: Descriptive.
Setting: University Hospital Rotterdam-Sophia Children's Hospital, department of Child and Adolescent Psychiatry, Rotterdam, the Netherlands.
Method: In 1995, structured interviews were held with 65 parents/pairs of parents (total 119 parents) of 66 girls with Turner's syndrome (36 aged 6-11 years and 30 aged 12-18 years) who participated in studies of the effect of growth hormone treatment. The questions concerned the parents' emotional reactions immediately after hearing the diagnosis and at the time of the interview, and the inner experience of their child's development.
Results: Immediately after the diagnosis, most parents felt sadness (95%) and shock (82%), approximately half were angry (61%) and ashamed (56%) and a minority felt guilt (29%). At the time of the interview (in 100 instances (84%) at least 5 years later), one-third of the parents still felt sadness, shock or anger and half felt ashamed. During the first few years of life, half the girls had been hospitalized at least three times, and feeding and sleeping also gave problems. Subsequently, the parents had problems with retarded motor development (67%), the acquisition of language (50%) and the restricted social skills of the child (67% were ragged a lot). Nearly all parents (90%) found their daughter's infertility difficult to cope with. They expected fewer opportunities for their daughter to find a job (38%) and (or) a partner (54%).
Conclusion: Parents of girls with Turner's syndrome frequently find it difficult to cope emotionally with the fact that their child has this disorder, and with the problems regarding their daughter's linguistic and motor development and subnormal social skills.