Snake: the development and validation of a questionnaire on sleep disturbances in children with severe psychomotor impairment
Validity; Screening; Neurosciences & Neurology; psychometric properties; behaviors; scale; disabilities; Children with severe psychomotor impairment; Daytime restlessness; instrument; Parent questionnaire; school-aged children; Sleep disturbance/disorders; sleep disturbance; Q3 conditions; tool development; scale development; SNAKE
Objective: Sleep disturbance and daytime restlessness are present in 50% to 80% of children with severe psychomotor impairment due to neurologic or other complex diseases. Although these issues severely impair the quality of life of the children and their families, they are not well addressed or managed by professionals. The lack of validated assessment tools prevents further research and the development of adequate therapies. Our aim is to develop and validate a sleep questionnaire for these children that could be used both for clinical management and systematic research. Methods: The sleep questionnaire for children with severe psychomotor impairment (Schlaffragebogen fur Kinder mit Neurologischen und Anderen Komplexen Erkrankungen, SNAKE) is based on expert opinion and consultation with parents. The psychometric quality of the questionnaire was assessed in a sample of 224 children with severe psychomotor impairment. Results: Confirmative factor analysis showed that SNAKE comprises of five factors (based on ICSD-2). Fit indices, analysis of item characteristics and convergent validity (coherence with measures of sleep [i.e., sleep efficiency]) and correlation with selected subscales of the Sleep Disturbance Scale for Children (SDSC) were good. Re-test analysis (n = 62) depicted high stability and good replication of validity. Conclusions: SNAKE is a reliable and valid tool for the diagnosis of sleep disturbances in children with severe psychomotor impairment. The SNAKE questionnaire is the first tool that addresses the specific relationship between sleep disturbance and severe disability in children. (c) 2013 Elsevier B.V. All rights reserved.
Blankenburg M; Tietze A L; Hechler T; Hirschfeld G; Michel E; Koh M; Zernikow B
Sleep Medicine
2013
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1016/j.sleep.2012.12.008" target="_blank" rel="noreferrer noopener">10.1016/j.sleep.2012.12.008</a>
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
caregivers; Validity; Screening; disability; behavior; Neurosciences & Neurology; disturbances; cerebral-palsy; test-retest reliability; instrument; validation; Children with severe psychomotor; HOST; impairment; maternal sleep; Parents' impairment; Parents' questionnaire; quality index; Sleep disturbances; sleep disturbance/disorders; unclear Q3 conditions; Q3 conditions; trajectory; characteristics; tool development; scale development
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. (C) 2013 Elsevier B.V. All rights reserved.
Tietze A L; Zernikow B; Otto M; Hirschfeld G; Michel E; Koh M; Blankenburg M
Sleep Medicine
2014
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1016/j.sleep.2013.09.019" target="_blank" rel="noreferrer noopener">10.1016/j.sleep.2013.09.019</a>
Face and Content Validity, Acceptability, and Feasibility of the Adapted Version of the Children's Palliative Outcome Scale: A Qualitative Pilot Study
Belgium; children; instrument; outcome assessment
Objective: To assess the face and content validity, acceptability and feasibility of a French version of the Children's Palliative Outcome Scale (CPOS). Background(s): Instruments in French used to measure outcomes in pediatric palliative care are lacking. Method(s): After forward-backward translation of the 12-item English CPOS to French, we conducted a qualitative pilot study. During semi structured interviews among children and parents, we used the CPOS, the Schedule for the Evaluation of Individual Quality of Life interview guide (SEIQoL) and the Quality of Life in Life-threatening Illness-Family Carer questionnaire (QOLLTI-F), in addition to three expert meetings with PLTs. Result(s): Fourteen children and adolescents (8-18 years) with life-limiting or life-threatening conditions cared for at home, in hospital or in respite care services, 19 parents, and 9 members of 4 pediatric liaison teams (PLTs) providing palliative care in a Belgian francophone region were included in the study. No families refused to participate. All children with verbal capacities chose to be interviewed in the presence of their parents and a PLT member. The children valued being given the opportunity to share their experiences. New QOL dimensions pertaining to social, emotional, and administrative health-care related issues were added to the original version of the 12-item CPOS, leading to a 22-item CPOS-2. Discussion(s): The CPOS-2 was perceived as relevant and easy to use by the principal stakeholders. Our study paves the way for a large-scale field study assessing its psychometric characteristics and its implementation in routine clinical care.
Friedel M; Brichard B; Boonen S; Tonon C; De Terwangne B; Bellis D; Mevisse M; Fonteyne C; Jaspard M; Schruse M; Harding R; Downing J; Namisango E; Degryse J M; Aujoulat I
Journal of palliative medicine
2020
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1089/jpm.2019.0646" target="_blank" rel="noreferrer noopener">10.1089/jpm.2019.0646</a>