scholarly journals Cerebral Palsy: Parental Stress of Caregivers

Psico-USF ◽  
2021 ◽  
Vol 26 (2) ◽  
pp. 357-368
Author(s):  
Mayara Barbosa Sindeaux Lima ◽  
Edson Marcos Leal Soares Ramos ◽  
Fernando Augusto Ramos Pontes ◽  
Simone Souza da Costa Silva
Keyword(s):  
Cerebral Palsy ◽  
Parental Stress ◽  
High Stress ◽  
Motor Impairment ◽  
Intervention Strategies ◽  
Descriptive Statistics ◽  
Stress Index ◽  
Parental Distress ◽  
Support Intervention ◽  
Children With Cerebral Palsy

Abstract The aim of this research was to investigate indicators of parental stress among caregivers of children with Cerebral Palsy. The study covered a total of 132 participants who responded to the following instruments: Sociodemographic Inventory, Gross Motor Function Classification System, and Parental Stress Index (PSI). Data were analyzed using descriptive statistics. The sample was composed mainly of mothers (97%); most of the children were classified under the most severe levels of motor impairment (61%). Regarding the PSI, almost half of the sample experienced high levels of parental stress (46.2%). The PSI domain with the highest percentage of caregivers with high stress was Parental Distress (60.6%). Most caregivers prioritize the needs of the child with Cerebral Palsy over their own needs more than they expected (90%). These results may support intervention strategies aimed at minimizing parental stress.

scholarly journals Parental Stress and Social Support of Caregivers of Children With Cerebral Palsy

2016 ◽  
Vol 26 (64) ◽  
pp. 207-214 ◽  
Author(s):  
Mayara Barbosa Sindeaux Lima ◽  
Vagner dos Santos Cardoso ◽  
Simone Souza da Costa Silva
Keyword(s):  
Social Support ◽  
Cerebral Palsy ◽  
Parental Stress ◽  
Capital City ◽  
Stress Index ◽  
Medical Outcomes ◽  
Children With Cerebral Palsy ◽  
Relevant Variables ◽  
Outcomes Study ◽  
The Impact

Abstract Stress and social support are relevant variables for understanding the impact of disability on the care relationship. Thus, this study investigates the association between the parental stress index, social support indicators, and the sociodemographic variables of caregivers of children with cerebral palsy in a capital city of the Eastern Amazon. The following instruments were applied to 100 caregivers: the Sociodemographic Inventory, the Gross Motor Function Classification System, the Parenting Stress Index, and the Medical Outcomes Study Social Support Survey. For data analysis, descriptive statistics were used, in addition to techniques of multivariate analysis. It was found that most participants had high parental stress and a high perception of social support. Specific aspects of the perception of social support and sociodemographic indicators were associated with stress. This knowledge favors the design of more assertive interventions because it outlines the aspects of these variables that appear to have a more effective impact on parental stress.

Validation of a robot serious game assessment protocol for upper limb motor impairment in children with cerebral palsy

2019 ◽  
Vol 45 (2) ◽  
pp. 137-149 ◽  
Author(s):  
Stéphanie Dehem ◽  
Vincenza Montedoro ◽  
Isaline Brouwers ◽  
Martin Gareth Edwards ◽  
Christine Detrembleur ◽  
...  
Keyword(s):  
Cerebral Palsy ◽  
Upper Limb ◽  
Motor Impairment ◽  
Serious Game ◽  
Assessment Protocol ◽  
Children With Cerebral Palsy

scholarly journals P.119 Emergency Department Use in Children with Cerebral Palsy: A Data Linkage Study

2021 ◽  
Vol 48 (s3) ◽  
pp. S53-S53
Author(s):  
O Fortin ◽  
P Ng ◽  
M Dorais ◽  
L Koclas ◽  
N Pigeon ◽  
...  
Keyword(s):  
Emergency Department ◽  
Cerebral Palsy ◽  
Low Socioeconomic Status ◽  
Motor Impairment ◽  
Linkage Study ◽  
Administrative Databases ◽  
Chi Square ◽  
Increased Risk ◽  
Children With Cerebral Palsy ◽  
Ed Visits

Background: Improved understanding of factors predictive of emergency department (ED) visits in children with cerebral palsy (CP) can help optimize healthcare use. We sought to identify the pattern of ED consultations in these children. Methods: Data from the Registre de paralysie cérébrale du Québec and provincial administrative databases were linked. The CP cohort was comprised of children born between 1999 and 2002. Data pertaining to ED presentations between 1999 and 2012 were obtained. Relative risks were calculated to identify factors associated with increased ED visits. Peers without CP were selected from administrative databases and matched in a 20:1 ratio. Chi-square tests and Student’s T-tests were used to compare the two cohorts. Results: 301 children with CP and 6040 peer controls were selected. Ninety-two percent (92%) of the CP cohort had at least one ED visit, compared to 74% amongst controls. Children with CP had an increased risk of high ED use compared to peers (RR 1.40 95% CI 1.30-1.52). Factors predictive of high ED use were comorbid epilepsy, severe motor impairment and low socioeconomic status. Conclusions: Children with CP have a higher need for urgent health assessments than their peers, resulting in increased use of ED services. System factors and barriers should be investigated.

scholarly journals Measuring Speech Production Development in Children With Cerebral Palsy Between 6 and 8 Years of Age: Relationships Among Measures

2020 ◽  
Vol 51 (3) ◽  
pp. 882-896 ◽  
Author(s):  
Phoebe Natzke ◽  
Ashley Sakash ◽  
Tristan Mahr ◽  
Katherine C. Hustad
Keyword(s):  
Cerebral Palsy ◽  
Speech Production ◽  
Speech Intelligibility ◽  
Motor Impairment ◽  
Speech Impairment ◽  
Change Over Time ◽  
Children With Cerebral Palsy ◽  
Wide Variability ◽  
Speech Performance ◽  
Over Time

Purpose Accurate measurement of speech intelligibility is essential for children with speech production deficits, but wide variability exists in the measures and protocols used. The current study sought to examine relationships among measures of speech intelligibility and the capacity of different measures to capture change over time. Method Forty-five children with cerebral palsy (CP) with and without speech motor impairment were observed at ages 6, 7, and 8 years. The speech performance of each child was rated using four measures at each time point: standardized articulation test scores, multiword intelligibility scores obtained from naïve listeners, parent ratings of intelligibility, and percent intelligible utterances obtained from language transcripts. We analyzed the correlations of measures within each age and within three different severity groups, and we analyzed how these measures changed year over year in each severity group. Results For children with CP who have mild and moderate speech deficits, different measures of speech production were weakly associated, and for children with CP with severe speech impairment, these measures showed stronger associations. The four measures also differed in their ability to capture change over time. Finally, results from standardized assessments of articulation were not found to inform overall speech intelligibility for children with mild and moderate speech deficits. Conclusions Results suggest that speech production is not fully described by any single clinical measure. In order to adequately describe functional speaking abilities and to capture change over time, multiple levels of measurement are required.

scholarly journals Evaluation of the effectiveness of screening and monitoring program for early prevention of orthopedic complications in children with cerebral palsy

2020 ◽  
Vol 64 (6) ◽  
pp. 79-83
Author(s):  
V. A. Zmanovskaya ◽  
E. V. Kashuba ◽  
R. I. Valeev ◽  
O. Yu. Ezhov
Keyword(s):  
Cerebral Palsy ◽  
Monitoring Program ◽  
Motor Impairment ◽  
Hip Dislocation ◽  
Preventive Treatment ◽  
Medical Rehabilitation ◽  
Control Group ◽  
Surveillance Program ◽  
Children With Cerebral Palsy ◽  
Hip Luxation

Hip instability and following hip luxation and subluxations remain common and serious problem among children with cerebral palsy (CP). The hip luxation and subluxations can be avoided using timely monitoring and early preventive treatment. However, standard scheme for patients’ management in children with CP is not adopted so far in Russian Federation. In 2014 on the territory of Tyumen region the Europe surveillance program for children with CP (CPUP) was introduced.Research purpose. To analyze the effectiveness of the early orthopedic complications prevention program in children with CP. Material and methods. The study included children with CP of the «Child psychoneurological medical-rehabilitation center «Nadezhda» register born in 2010 and earlier (n=176), undergoing surveillance under the European Program (main group); the comparison group consisted of children with CP which were treated before the adoption of the program (n=642). Group comparability was achieved by selecting children with one level of motor impairment according to the GMFCS classification. The presence of expressed orthopedic complications was exposed at the value of Reimers Index (RI) above 40%, and the effectiveness of the program was determined by a reduction in the frequency of such RI.Results. It was found that overall incidence of hip dislocation in control group decreased by 70%: in children with GMFCS II by 100%, GMFCS III – by 78%, GMFCS IV – by 62% and GMFCS V – by 74%.Conclusion. Due to the introduction of the Europe surveillance program on the territory of Tyumen region there is a significant decrease in orthopedic complications incidence in children with CP.

The influence of motor impairment on autonomic heart rate modulation among children with cerebral palsy

2011 ◽  
Vol 32 (1) ◽  
pp. 217-221 ◽  
Author(s):  
Antonio Roberto Zamunér ◽  
Andrea Baraldi Cunha ◽  
Ester da Silva ◽  
Ana Paola Negri ◽  
Eloisa Tudella ◽  
...  
Keyword(s):  
Heart Rate ◽  
Cerebral Palsy ◽  
Motor Impairment ◽  
Rate Modulation ◽  
Children With Cerebral Palsy

Carer stress in Fetal Alcohol Spectrum Disorders: the implications of data from the UK national specialist FASD clinic for training carers

2020 ◽  
Vol 44 (3) ◽  
pp. 242-254
Author(s):  
Zameer Mohamed ◽  
Alexandra CS Carlisle ◽  
Alexandra C Livesey ◽  
Raja AS Mukherjee
Keyword(s):  
Parental Stress ◽  
Fetal Alcohol Spectrum Disorders ◽  
High Stress ◽  
Stress Index ◽  
Adaptive Behaviour ◽  
Service Development ◽  
Fetal Alcohol ◽  
Spectrum Disorders ◽  
The Uk ◽  
Fetal Alcohol Spectrum

Medical research literature is increasingly reporting high levels of stress among carers of children with Fetal Alcohol Spectrum Disorders (FASD). However, while there are a growing number of evidence-based innovations around the world for carer stress generally, there are no programmes in the UK for those looking after children with FASD. The aim of this study, therefore, is to provide an up-to-date profile of stress faced by these carers, to explore its sources and suggest directions for service development. Seventy-one carers and their child with FASD participated in a study designed for this purpose. Parental stress levels were assessed using the Parental Stress Index (PSI) and the characteristics of their children – cognition, adaptive behaviour, sensory processing and externalising behaviour function – by a battery of measures. Further correlational and regression analyses were carried out to explore the nature and source of the carer stress identified. When the levels of stress in families was measured, all six Child Domains on the PSI showed results that were above the clinically significant cut-off for high stress, while all seven Parent Domains were below this threshold. Significant associations were found between the PSI and child behaviours, but generally the Parent Domain and Child Behaviours were not correlated. Regression analysis found executive functioning difficulties in children to be the main predictors of carer stress but sensory difficulties were not significant, despite 83% of the children having elevated problems of this kind. Total stress scores among carers of children with FASD were elevated and far exceeded the threshold score on the PSI, suggesting a need for ‘further professional consultation’. Consideration of parental needs and the development of evidenced-based interventions specific for these carers are highlighted as areas for future development.

scholarly journals Parental stress in mothers of children and adolescents with cerebral palsy

2014 ◽  
Vol 22 (3) ◽  
pp. 440-447 ◽  
Author(s):  
Maysa Ferreira Martins Ribeiro ◽  
Ana Luiza Lima Sousa ◽  
Luc Vandenberghe ◽  
Celmo Celeno Porto
Keyword(s):  
Cerebral Palsy ◽  
Children And Adolescents ◽  
Parental Stress ◽  
Leisure Activities ◽  
Motor Impairment ◽  
Paid Work ◽  
Older Children ◽  
Cross Sectional ◽  
Severe Motor ◽  
Severe Motor Impairment

OBJECTIVES: to evaluate parental stress of mothers of children and adolescents with cerebral palsy; to verify whether parental stress undergoes variations according to the level of motor compromise, the child's phase of life, and sociodemographic variables.METHOD: a cross-sectional, descriptive study, with 223 mothers of children and adolescents with cerebral palsy.RESULTS: 45.3% of the mothers presented high levels of stress; there were differences in stress between mothers of children with mild and severe motor impairment; mothers of older children were more stressed than mothers of younger children and of adolescents; paid work and leisure activities reduced the stress.CONCLUSION: mothers of children and adolescents with cerebral palsy, whose children present mild to severe motor impairment are vulnerable to parental stress. Paid work and leisure activities were the factors that contributed most to reducing the stress.

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