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Sleep Med. 2014 Feb;15(2):219-27. doi: 10.1016/j.sleep.2013.09.019. Epub 2013 Nov 20.

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.

Author information

1
Chair for Children's Pain Therapy and Paediatric Palliative Care, Witten/Herdecke University, Germany.
2
Chair for Children's Pain Therapy and Paediatric Palliative Care, Witten/Herdecke University, Germany. Electronic address: B.Zernikow@kinderklinik-datteln.de.
3
Kinderklinik, Klinikum Friedrichshafen, Friedrichshafen, Germany.
4
Great Ormond Street Hospital for Children NHS Trust, London, UK.

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.

CONCLUSION:

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.

KEYWORDS:

Children with severe psychomotor impairment; HOST; Parents’ impairment; Parents’ questionnaire; Screening; Sleep disturbances; Validity

PMID:
24360535
DOI:
10.1016/j.sleep.2013.09.019
[Indexed for MEDLINE]

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