• Anna L Tietze, Boris Zernikow, Erik Michel, and Markus Blankenburg.
• Children's Pain Therapy and Pediatric Palliative Care, Witten/Herdecke University, Witten, Germany.
• Dev Med Child Neurol. 2014 Dec 1; 56 (12): 1187-93.

AimIn 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.MethodParents 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.ResultsParents 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.InterpretationSleep-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.© 2014 Mac Keith Press.

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