title: The development and psychometric assessment of a questionnaire to assess sleep and daily troubles in parents of children and young adults with severe psychomotor impairment.
abstract: BACKGROUND
  Children with severe psychomotor impairment (SPMI) often experience sleep disturbances that severely distress both the child and his or her parents. Validated questionnaires for the assessment of parents' distress related to their child's sleep disturbances are lacking.
  
  
  METHODS
  We developed and validated a new questionnaire, the HOST (holistic assessment of sleep and daily troubles in parents of children with SPMI) to assess the effect of the sleep disturbances in children with SPMI on their parents. The questionnaire was developed based on published data and expert opinion, and it was refined via direct consultation with affected parents. Its psychometric characteristics were assessed in a sample of parents of 214 children with SPMI. It was retested using a random subsample of the participants.
  
  
  RESULTS
  Explorative factor analysis revealed that the HOST was composed of four scales. Fit indices, item analysis, and convergent validity (coherence with preexisting instruments of sleep disturbances and health status) were adequate. Retest analysis (n=62) revealed high stability of the HOST questionnaire and adequate replication validity.
  
  
  CONCLUSIONS
  Sleep-related difficulties significantly impact the sociomedical characteristics of the parents of children with complex neurologic diseases. Typically, parents are severely affected in various aspects of daily life (i.e., medical health, social life, professional life). The HOST proved to be a valid, reliable and economical assessment tool of sleep-related difficulties in parents and relatives of children with SPMI. The HOST is capable of identifying individuals and specific areas requiring intervention.
authors.affiliation: Chair for Children's Pain Therapy and Paediatric Palliative Care, Witten/Herdecke University, Germany.
authors.forename: Anna L
authors.initials: AL
authors.lastname: Tietze
authors.affiliation: Chair for Children's Pain Therapy and Paediatric Palliative Care, Witten/Herdecke University, Germany. Electronic address: B.Zernikow@kinderklinik-datteln.de.
authors.forename: Boris
authors.initials: B
authors.lastname: Zernikow
authors.affiliation: Chair for Children's Pain Therapy and Paediatric Palliative Care, Witten/Herdecke University, Germany.
authors.forename: Michael
authors.initials: M
authors.lastname: Otto
authors.affiliation: Chair for Children's Pain Therapy and Paediatric Palliative Care, Witten/Herdecke University, Germany.
authors.forename: Gerrit
authors.initials: G
authors.lastname: Hirschfeld
authors.affiliation: Kinderklinik, Klinikum Friedrichshafen, Friedrichshafen, Germany.
authors.forename: Erik
authors.initials: E
authors.lastname: Michel
authors.affiliation: Great Ormond Street Hospital for Children NHS Trust, London, UK.
authors.forename: Michelle
authors.initials: M
authors.lastname: Koh
authors.affiliation: Chair for Children's Pain Therapy and Paediatric Palliative Care, Witten/Herdecke University, Germany.
authors.forename: Markus
authors.initials: M
authors.lastname: Blankenburg
mesh_terms: D000203:Activities of Daily Living / Q000523:psychology*; D000293:Adolescent; D000328:Adult; D017028:Caregivers / Q000523:psychology; D002648:Child; D002675:Child, Preschool; D003430:Cross-Sectional Studies; D005163:Factor Analysis, Statistical; D005260:Female; D006306:Health Surveys; D006801:Humans; D007223:Infant; D007231:Infant, Newborn; D008297:Male; D010290:Parents / Q000523:psychology; D011594:Psychometrics; D011596:Psychomotor Disorders / Q000150:complications / Q000175:diagnosis* / Q000523:psychology; D012893:Sleep Wake Disorders / Q000175:diagnosis* / Q000209:etiology / Q000523:psychology; D011795:Surveys and Questionnaires; D055815:Young Adult
keywords: Children with severe psychomotor impairment; HOST; Parents’ impairment; Parents’ questionnaire; Screening; Sleep disturbances; Validity