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

Tietze, Anna L.; Zernikow, Boris; Otto, Michael W.; Hirschfeld, Gerrit; Michel, Erik; Koh, Michelle; Blankenburg, Markus

doi:10.1016/j.sleep.2013.09.019

Cited by 12 publications

(18 citation statements)

References 27 publications

Supporting

Mentioning

Contrasting

Order By: Relevance

“…partnership, social contacts, impact on job performance) caused by sleep disturbances of the child or the parents. Detailed data on the HOST questionnaire, its development and validation as well as reference values for the HOST assessment have been published elsewhere . The HOST questionnaire is valid for participants up to 25 years in age because young adults (18 – 25y) with SPMI may have the same developmental and parenting needs as those under the age of 18 years, and these young adults are often cared for by their parents …”

Section: Methodsmentioning

confidence: 99%

“…This study aimed to assess the sleep patterns and QoL in parents of children, adolescents, or young adults (hereinafter referred to as children) with SPMI using a newly developed and validated questionnaire called the holistic assessment of sleep and daily troubles (HOST) in parents with children with SPMI, as well as established measures (Short‐Form Health Survey [SF‐36], Epworth Sleepiness Scale [ESS], [Sleep questionnaire for children with neurological disorders and other complexes] SNAKE questionnaire, and the Pittsburgh Sleep Quality Index [PSQI]) …”

mentioning

confidence: 99%

“…9,10,12 Regardless of the exact diagnosis of the child's sleep disorder, mothers who reported more sleep problems in their child also experienced increased daytime tiredness themselves. 13 This study aimed to assess the sleep patterns and QoL in parents of children, adolescents, or young adults (hereinafter referred to as children) with SPMI using a newly developed and validated questionnaire called the holistic assessment of sleep and daily troubles (HOST) in parents with children with SPMI, 14…”

mentioning

confidence: 99%

See 2 more Smart Citations

Sleep disturbances in children, adolescents, and young adults with severe psychomotor impairment: impact on parental quality of life and sleep

Tietze

Zernikow

Michel³

et al. 2014

Develop Med Child Neuro

Self Cite

View full text Add to dashboard Cite

Aim 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.

show abstract

Section: Methodsmentioning

confidence: 99%

mentioning

confidence: 99%

mentioning

confidence: 99%

See 1 more Smart Citation

Sleep disturbances in children, adolescents, and young adults with severe psychomotor impairment: impact on parental quality of life and sleep

Tietze

Zernikow

Michel³

et al. 2014

Develop Med Child Neuro

Self Cite

View full text Add to dashboard Cite

show abstract

“…Chronic sleep disruption for parents may have adverse effects on parental mental health, physical health, and emotional as well as social functioning. 6,7 As Tietze et al state, this study further raises the need to develop diagnostic and therapeutic approaches to target parental sleep.…”

mentioning

confidence: 79%

“…The new questionnaire, the holistic assessment of sleep and daily troubles (HOST), was validated by the same principal author in a previous publication. 7 The HOST is noted by the authors to be 'specifically designed for the assessment of sleep-related disturbance in parents of a child with SPMI and for mapping the parents' night-time disruption caused by the time needed for caring for the child'.The findings of this study are not surprising to clinicians who care for children and young adults with SPMI in daily practice, but still require further evidence from research studies such as the study of Tietze et al Some of the results of Tietze et al's study include that parents spend an average of 1 hour per night caring for their child, and approximately 50% of parents show a prolonged sleep latency and many parents experience chronic exhaustion. This area of study is of great importance as sleep difficulties in children at night may lead to daytime behaviour problems that can further contribute to increased stress and fatigue for parents.…”

mentioning

confidence: 99%

Caring for a child with severe psychomotor impairment: the impact on parental sleep and quality of life

Weiss

2014

Develop Med Child Neuro

View full text Add to dashboard Cite

This commentary is on the original article by Tietze et al. on pages 1187-1193 of this issue.Sleep deprivation and daytime fatigue are unavoidable and accepted consequences for specific brief periods of parenting, such as during night-time caregiving for a young infant from birth through the first 6 months of life. In this short period, infants are not expected to sleep through the night. However, parents are able to cope with this short-term insomnia with the expectation that (in most cases) their child will develop good sleep routines over the first year of life and this will markedly decrease the need for parental caregiving during the night. Tietze et al. 1 have reported in this study that more than 50% of parents of children and young adults with severe psychomotor impairment (SPMI) have chronic sleep disruption. The poor sleep of parents in this cohort was associated with severe impairment in health status and quality of life.There is evidence from many studies that disrupted sleep patterns are frequently described in children with a variety of developmental disorders. This includes (but is not limited to) children with autism spectrum disorders (ASD), cerebral palsy, and epilepsy. It has been reported in a limited number of studies that in order to care for the needs of their children at night, caregivers, oftentimes mothers, of children with developmental disorders experience increased sleep disruptions and sleep deprivation. 2,3 This has been well documented in parents of children with ASD, 4-6 but needs further study. The study of Tietze et al. provides further evidence of this association in children and young adults with SPMI. As the authors have noted and referenced in this paper, 'despite its importance the direct effect of a child's sleep disturbance on the sleep patterns of his/her caregivers has not been adequately investigated'.Tietze et al. provide further evidence that 'sleep related difficulties have a significant social medical impact on the parents of children, adolescents and young adults with complex neurological problems'. The methodology in this study is a prospective questionnaire-based cross-sectional survey of over 200 parents of children, adolescents, and young adults with SPMI in three outpatient and one inpatient center. The questionnaires include both new as well as established measures of adult sleep disturbance. The new questionnaire, the holistic assessment of sleep and daily troubles (HOST), was validated by the same principal author in a previous publication. 7 The HOST is noted by the authors to be 'specifically designed for the assessment of sleep-related disturbance in parents of a child with SPMI and for mapping the parents' night-time disruption caused by the time needed for caring for the child'.The findings of this study are not surprising to clinicians who care for children and young adults with SPMI in daily practice, but still require further evidence from research studies such as the study of Tietze et al. Some of the results of Tietze et al.'s study include that...

show abstract

Clinical characteristics of children with severe neurologic impairment: A scoping review

Nelson

Finlay

Huang

et al. 2022

Journal of Hospital Medicine

View full text Add to dashboard Cite

Objective: The aim of this study is to extrapolate the clinical features of children with severe neurologic impairment (SNI) based on the functional characteristics and comorbidities described in published studies.Methods: Four databases were searched. We included studies that describe clinical features of a group of children with SNI (≥20 subjects <19 years of age with >1 neurologic diagnosis and severe functional limitation) using data from caregivers, medical charts, or prospective collection. Studies that were not written in English were excluded. We extracted data about functional characteristics, comorbidities, and study topics. Results:We included 102 studies, spanning 5 continents over 43 years, using 41 distinct terms for SNI. The terms SNI and neurologic impairment (NI) were used in 59 studies (58%). Most studies (n = 81, 79%) described ≥3 types of functional

show abstract

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

Cited by 12 publications

References 27 publications

Sleep disturbances in children, adolescents, and young adults with severe psychomotor impairment: impact on parental quality of life and sleep

Sleep disturbances in children, adolescents, and young adults with severe psychomotor impairment: impact on parental quality of life and sleep

Caring for a child with severe psychomotor impairment: the impact on parental sleep and quality of life

Clinical characteristics of children with severe neurologic impairment: A scoping review

Contact Info

Product

Resources

About