Article

In childhood, severe psychomotor impairment (SPMI) is associated with
profound sleep disturbances. With the help of newly developed and validated
measures, we systematically assessed how much a child's sleep disturbance affects
parental sleep and quality of life (QoL) in this specific patient group. METHOD:
Parents and their children with SPMI were enrolled from three outpatient centers
and one in-patient center in Germany. We administered a set of questionnaires to
the parents that addressed their child's sleep quality, the sleep
disturbance-related parental burden, and the impact on both parental sleep and
QoL. Additional questionnaires were used to gather data describing our sample
group to allow for comparison with published norms. RESULTS: Parents of 214
children, adolescents, and young adults with SPMI (114 males, 100 females; mean
age 10y 5mo, SD 5y 6mo, range 0.1-25y) responded to the questionnaire set
(response rate of 66%). We found severe impairment of parental health status and
QoL. More than 50% of the parents suffered from a sleep disorder (e.g. prolonged
sleep latency, shortened sleep duration). Sleep disturbances in children,
adolescents, and young adults correlated strongly with parental sleep
disturbances, parental impairment of physical and mental functioning, parental
social functioning, and parental working ability. INTERPRETATION: Sleep-related
difficulties have a significant sociomedical impact on the parents of children,
adolescents, and young adults with complex neurological diseases. Typically,
parents are severely affected in various aspects of daily living. There is a need
for novel diagnostic and therapeutic approaches that match the complex
sociomedical needs of these patients and their families.
CI - (c) 2014 Mac Keith Press.

Langue : ANGLAIS