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Pain and Communication in Children with Cerebral Palsy: Influence on Parents' Perception of Family Impact and Healthcare Satisfaction.

ABSTRACT: Cerebral palsy (CP) is an impacting chronic condition. Concomitant comorbidities such as pain and speech inability may further affect parents' perception of the pathology impact in the family quality of life and the provided care. The objective of this cross-sectional descriptive correlational study was to compare parental reports on family impact and healthcare satisfaction in children with CP with and without chronic pain and with and without speech ability. Parents of 59 children with CP (age range = 4-18 years) completed several questions about pain and speech ability and two modules of the Pediatric Quality of Life Measurement Model: The PedsQLTM 2.0 Family Impact Module and the PedsQLTM Healthcare Satisfaction Generic Module. Our findings revealed that children's pain slightly impacted family physical health, social health and worry. In children without pain, speech inability increased the perceived health impact. Parents' healthcare satisfaction was barely affected by pain or speech inability, both increasing parents' satisfaction in the professional technical skills and inclusion of family domains on the care plan. In conclusion, pain and speech inability in children with CP can impact family health but not healthcare satisfaction. Regular assessment and intervention in family health is essential for the design of family-centred programs for children with CP.

SUBMITTER: Riquelme I

PROVIDER: S-EPMC7912482 | biostudies-literature | 2021 Jan

REPOSITORIES: biostudies-literature

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Pain and Communication in Children with Cerebral Palsy: Influence on Parents' Perception of Family Impact and Healthcare Satisfaction.

Riquelme Inmaculada I Sabater-Gárriz Álvaro Á Montoya Pedro P

Children (Basel, Switzerland) 20210127 2

Cerebral palsy (CP) is an impacting chronic condition. Concomitant comorbidities such as pain and speech inability may further affect parents' perception of the pathology impact in the family quality of life and the provided care. The objective of this cross-sectional descriptive correlational study was to compare parental reports on family impact and healthcare satisfaction in children with CP with and without chronic pain and with and without speech ability. Parents of 59 children with CP (age ...[more]

PMID: 33513751

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Project description:BackgroundChildren with cerebral palsy often exhibit an altered gait pattern; however, it is uncertain whether the use of an instrumented gait analysis in interdisciplinary interventions affects the perceived experience of family-centered service (FCS) and/or gross motor function. The aim of this study is to investigate whether individually tailored interdisciplinary interventions, based on an instrumented gait analysis report, has a superior effectiveness on perceived FCS and gross motor function in children with cerebral palsy, compared to 'care as usual' without the use of instrumented gait analysis. Furthermore, to investigate potential associations between perceived FCS and gross motor function improvement with the goal of improving future therapy on gross motor function.MethodThis is a sequel analysis on tertiary outcome measures from a prospective, single blind, randomized, parallel group study including two groups of 30 children aged 5-8 years with spastic cerebral palsy at Gross Motor Function Classification System levels I-II (n = 60). The intervention group underwent a three-dimensional gait analysis, from which a clinical report was written with recommendations on interdisciplinary interventions, such as physical therapy, orthopedic surgery, orthotics or spasticity management. To assess effectiveness on perceived FCS and gross motor function, at baseline, 26 weeks and 52 weeks, the five domains in the Measure of Processes of Care (MPOC-20) (Enabling and partnership, Providing general information, Providing specific information about the child, Respectful and supportive service, and Coordinated and comprehensive care) and the Gross Motor Function Measurement (GMFM-66) were used as outcome measures.ResultsNo significant differences in between-group change scores in any of the five MPOC-20 domains were observed (p = 0.40-0.97). In favor of the intervention group a significantly higher between-group change score in GMFM-66 (mean difference: 3.05 [95%CI: 1.12-4.98], p = 0.003) after 52 weeks was observed.ConclusionThe addition of an instrumented gait analysis report to 'care as usual' did not improve the parents' perceptions of FCS in treatment of children with cerebral palsy. However, superior improvement in the GMFM-66 was observed in the intervention group, suggesting meaningful gross motor function improvement.Trial registrationClinical Trials, NCT02160457 . Registered June 10th 2014.

Project description:Effective communication with primary care physicians is important yet incompletely understood for Spanish-speaking parents. We predicted lower satisfaction among Spanish-speaking compared to English-speaking Latino and non-Latino parents.Cross-sectional analysis at 2-month well visits within the Greenlight study at 4 pediatric resident clinics. Parents reported satisfaction with 14 physician communication items using the validated Communication Assessment Tool (CAT). High satisfaction was defined as "excellent" on each CAT item. Mean estimations compared satisfaction for communication items among Spanish- and English-speaking Latinos and non-Latinos. We used generalized linear regression modeling, adjusted for parent age, education, income, and clinic site. Among Spanish-speaking parents, we compared visits conducted in Spanish with and without an interpreter, and in English.Compared to English-speaking Latino (n = 127) and non-Latino parents (n = 432), fewer Spanish-speaking parents (n = 303) reported satisfaction with 14 communication items. No significant differences were found between English-speaking Latinos and non-Latinos. Greatest differences were found in the use of a greeting that made the parent comfortable (59.4% of Spanish-speaking Latinos endorsing "excellent" vs 77.5% English-speaking Latinos, P < .01) and discussing follow-up (62.5% of Spanish-speaking Latinos vs 79.8% English-speaking Latinos, P < .01). After adjusting for parent age, education, income, and study site, Spanish-speaking Latinos were still less likely to report high satisfaction with these communication items. Satisfaction was not different among Spanish-speaking parents when the physician spoke Spanish versus used an interpreter.Satisfaction with physician communication was associated with language but not ethnicity. Spanish-speaking parents less frequently report satisfaction with communication, and innovative solutions to enhance communication quality are needed.

Project description:AimTo determine development curves of communication and social interaction from childhood into adulthood for individuals with cerebral palsy (CP).MethodThis Pediatric Rehabilitation Research in the Netherlands (PERRIN)-DECADE study longitudinally assessed 421 individuals with CP, aged from 1 to 20 years at baseline, after 13 years (n=121 at follow-up). Communication and social interactions were assessed using the Vineland Adaptive Behavior Scales. We estimated the average maximum performance limit (level) and age at which 90% of the limit was reached (age90 ) using nonlinear mixed-effects modeling.ResultsOne-hundred individuals without intellectual disability were aged 21 to 34 years at follow-up (39 females, 61 males) (mean age [SD] 28y 5mo [3y 11mo]). Limits of individuals without intellectual disability, regardless of Gross Motor Function Classification System (GMFCS) level, approached the maximum score and were significantly higher than those of individuals with intellectual disability. Ages90 ranged between 3 and 4 years for receptive communication, 6 and 7 years for expressive communication and interrelationships, 12 and 16 years for written communication, 13 and 16 years for play and leisure, and 14 and 16 years for coping. Twenty-one individuals with intellectual disability were between 21 and 27 years at follow-up (8 females, 13 males) (mean age [SD] 24y 7mo [1y 8mo]). Individuals with intellectual disability in GMFCS level V showed the least favourable development, but variation between individuals with intellectual disability was large.InterpretationIndividuals with CP and without intellectual disability show developmental curves of communication and social interactions similar to typically developing individuals, regardless of their level of motor function. Those with intellectual disability reach lower performance levels and vary largely in individual development.What this paper addsCommunication and social interactions in individuals with cerebral palsy without intellectual disability develop similarly to typically developing individuals. Communication and social interactions of individuals with intellectual disability develop less favourably and show large variation.

Dataset Information

Pain and Communication in Children with Cerebral Palsy: Influence on Parents' Perception of Family Impact and Healthcare Satisfaction.

Publications

Pain and Communication in Children with Cerebral Palsy: Influence on Parents' Perception of Family Impact and Healthcare Satisfaction.

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