Care burden, perceived social support, coping attitudes and life satisfaction of mothers with children with cerebral palsy.

AIM: This study's aim is to determine the relationship between care burden, perceived social support, coping attitudes and life satisfaction of mothers with children with cerebral palsy (CP). METHODS: This descriptive study was conducted in Turkey between March and June 2022 to determine the relationship between caregiving burden, perceived social support, coping attitudes and life satisfaction of 122 mothers with CP children. Path analysis was used to evaluate the data. RESULTS: Correlation analysis showed a positive relationship between mothers' social support perceptions and life satisfaction and coping attitudes, a positive relationship between their life satisfaction and coping attitudes (p < .001). The path analysis showed that the social support perceived by the mothers significantly affected their coping attitudes (ß = .257; p < .001) and life satisfaction (ß = .081; p < .001). Mothers' care burden (ß = .169; p < .001) and coping attitudes (ß = .071; p < .05) also had a significant effect on their life satisfaction. CONCLUSIONS: It is an important finding of this study that mothers' perceptions of social support and coping attitudes have a positive effect on their life satisfaction. Long-term care can cause physical and psychological problems for mothers. Mothers' strong coping strategies and high levels of social support may reduce the occurrence of these problems. Drawing attention to this issue in mothers and revealing the effects of these variables is important in terms of indirectly supporting child outcomes.

Cognitive Functioning and Assessment in Adults with Cerebral Palsy: A Scoping Review.

In this scoping review, we summarize the current knowledge of cognitive functioning in adults with cerebral palsy (CP), and identify the neuropsychological tests typically used in this population. 39 studies from the period January 1990 - August 2023 were included in the review, and they differ widely in their aims and approach to studying cognition. Very few studies have cognitive assessment as their core aim and use a neuropsychological test battery. The included studies show great variability in reported intelligence and cognitive functioning in adults with CP, and cognitive deficits have been reported in all cognitive domains. Most of the studies suffer from methodological limitations, and there is ample room for improvement within the field. We conclude by suggesting a number of recommendations that may contribute to increasing our understanding of cognitive impairments in adults with CP.

Family caregivers' experience of care with a child with cerebral palsy: the lived experiences and challenges of caregivers in a resource-limited setting in northern Ghana.

INTRODUCTION: Caring for a child with cerebral palsy may be more emotionally and physically exhausting than caring for a typical growing child. The family caregivers' perspective of this phenomenon needs exploring to facilitate the development of services. Our study explored the challenges family caregivers face with children with cerebral palsy in a resource-limited context in northern Ghana. METHODS: We conducted a qualitative study underpinned by phenomenological principles where it is believed that the reality of a phenomenon is tied to caregivers' perspectives of their own experiences. In this study, we unearthed caregivers' experiences/challenges from their own perspectives. The method of data analysis used was to allow the issues to emerge from the data (inductive process) using the content analysis approach. We recruited 13 caregivers of children with cerebral palsy from the physiotherapy unit at Tamale Teaching Hospital, and conducted individual in-depth interviews supported by an open-ended topic guide. Interviews were audio recorded, transcribed, and translated and coded inductively before conducting a content analysis of the data when grouped into themes. RESULTS: We have identified barriers to managing a child with cerebral palsy, including sociocultural barriers (values, attitudes and belief systems within society), economic challenges and immediate physical care burdens. Specific barriers included discrimination and isolation, lack of family and societal support, with poor access to health information and formal education. Others were lack of information on the cause and course of cerebral palsy, caregivers' loss of jobs, increased healthcare expenditure and struggles in lifting and moving children, which resonate with evidence-based multidimensional model of caregiving process and caregiver burden. CONCLUSION: Caregivers have the arduous task of caring for a child with cerebral palsy. Social support interventions and policy initiatives that seek to ameliorate caregivers' finances and make formal education accessible to this marginalised child population may be beneficial in this context.

Harnessing neuroplasticity to improve motor performance in infants with cerebral palsy: a study protocol for the GAME randomised controlled trial.

INTRODUCTION: Cerebral palsy (CP) is the most common physical disability of childhood worldwide. Historically the diagnosis was made between 12 and 24 months, meaning data about effective early interventions to improve motor outcomes are scant. In high-income countries, two in three children will walk. This evaluator-blinded randomised controlled trial will investigate the efficacy of an early and sustained Goals-Activity-Motor Enrichment approach to improve motor and cognitive skills in infants with suspected or confirmed CP. METHODS AND ANALYSIS: Participants will be recruited from neonatal intensive care units and the community in Australia across four states. To be eligible for inclusion infants will be aged 3-6.5 months corrected for prematurity and have a diagnosis of CP or 'high risk of CP' according to the International Clinical Practice Guideline criteria. Eligible participants whose caregivers consent will be randomly allocated to receive usual care or weekly sessions at home from a GAME-trained study physiotherapist or occupational therapist, paired with a daily home programme, until age 2. The study requires 150 participants per group to detect a 0.5 SD difference in motor skills at 2 years of age, measured by the Peabody Developmental Motor Scales-2. Secondary outcomes include gross motor function, cognition, functional independence, social-emotional development and quality of life. A within-trial economic evaluation is also planned. ETHICS AND DISSEMINATION: Ethical approval was obtained from the Sydney Children's Hospital Network Human Ethics Committee in April 2017 (ref number HREC/17/SCHN/37). Outcomes will be disseminated through peer-reviewed journal publications, presentations at international conferences and consumer websites. TRIAL REGISTRATION NUMBER: ACTRN12617000006347.

Motivators and barriers to research participation for individuals with cerebral palsy and their families.

OBJECTIVE(S): Our objective was to investigate the motivators and barriers associated with the individual or family decision to participate in cerebral palsy research. Based on this information, we offer suggestions to increase the likelihood of participation in future CP studies. METHODS: A digital survey was administered to stakeholders affected by cerebral palsy across the US. Our analysis focused on variables related to personal interests, travel, and study-specific elements. Statistical tests investigated the effects of responder type, cerebral palsy type, and Gross Motor Function Classification System level on travel and study-specific element variables. Recommendations were informed by responses reflecting the majority of respondents. RESULTS: Based on 233 responses, we found that respondents highly valued research participation (on average 88.2/100) and compensation (on average 62.3/100). Motivators included the potential for direct benefit (62.2%) and helping others (53.4%). The primary barriers to participation were schedule limitations (48.9%) and travel logistics (32.6%). Schedule limitations were especially pertinent to caregivers, while individuals with more severe cerebral palsy diagnoses reported the necessity of additional items to comfortably travel. CONCLUSIONS: Overall, we encourage the involvement of stakeholders affected by cerebral palsy in the research process. Researchers should consider offering flexible study times, accommodating locations, and compensation for time and travel expenses. We recommend a minimum compensation of $15/hour and a maximum time commitment of 4 hours/day to respect participants' time and increase likelihood of research participation. Future studies should track how attitudes toward research change with time and experience.

Measure of Early Vision Use: development of a new assessment tool for children with cerebral palsy.

PURPOSE: To report the development of an assessment tool to describe "how vision is used" for children with cerebral palsy. METHOD: Measurement development consisted of three steps: (i) an online survey to explore the relevance and comprehensiveness of visual behaviours identified in a previous conceptualisation study; (ii) construction of items and a rating scale for the new measure; and (iii) cognitive interviews to explore comprehensibility and refine the measure in preparation for field testing. Survey respondents were 130 parents of children with cerebral palsy, eight adults with cerebral palsy, and 108 clinicians (n = 246). Nine parents participated in the interviews. RESULTS: The new tool, the Measure of Early Vision Use, is a 14-item descriptive measure of typical performance of visual behaviours observable in everyday activities, as rated by parent/caregiver observation. Each item is rated on a 4-point ordinal scale. CONCLUSIONS: This new measure is conceptually grounded within the Activity level domain of the International Classification of Functioning, Disability and Health as a measure of a single visual ability construct. The target population is children with cerebral palsy, and using parent report the Measure of Early Vision Use describes both strengths and limitations in using vision. This study addressed the selection of items and response options for the new scale, and provides evidence to support content relevance, comprehensiveness and comprehensibility from key stakeholders. Further research will explore psychometric properties and clinical utility.Implications for rehabilitationThe ability to use vision in daily activities is relevant to the development and learning of all children, so the availability of a method for describing visual abilities has potential for diverse research and clinical purposes.The Measure of Early Vision Use is a parent-report tool that provides a criterion-referenced method for quantifying and describing how children use vision in typical daily activities to support intervention planning.Clinicians and parents wishing to measure vision use in children with cerebral palsy can be confident about the rigorous methods used to develop this tool, including consultation with key stakeholders.

Establishing consensus for the assessment of chronic pain in children and young people with cerebral palsy: a Delphi study.

PURPOSE: Inconsistent and inadequate pain assessment practices in cerebral palsy (CP) have resulted from a lack of standardisation of pain assessment, limited use of appropriate tools and failure to integrate disability and biopsychosocial models. To assist with improving consistency, this study aimed to establish consensus from key stakeholders regarding domains considered essential for measuring chronic pain in children and young people with CP. METHOD: A modified electronic Delphi study was conducted on 83 stakeholders, including clinicians, researchers, people with CP and parents of children with CP. Participants rated 18 domains sourced from existing literature as either "core", "recommended", "exploratory" or "not required". RESULTS: After two rounds of surveys, 12 domains were considered core: pain location, pain frequency, pain intensity, changeable factors, impact on emotional wellbeing, impact on participation, pain communication, influence on quality of life, physical impacts, sleep, pain duration and pain expression. CONCLUSION: These domains reflect the complexity of pain in a heterogeneous population where medical comorbidities are common and communication and intellectual limitations impact significantly on the ability of many to self-report. The domains will be utilised to build a framework of pain assessment specific to children and young people with CP guided by the biopsychosocial model.Implications for rehabilitationChronic pain is under-identified and poorly assessed in the cerebral palsy (CP) population.The perspectives of clinicians, researchers and consumers are vital for developing a framework for chronic pain assessment in CP.Consensus of key stakeholders found 12 domains considered essential to incorporate into a chronic pain assessment model in CP.

Disrupted Access to Therapies and Impact on Well-Being During the COVID-19 Pandemic for Children With Motor Impairment and Their Caregivers.

OBJECTIVES: The aim of this study was to determine the impact of the COVID-19 pandemic on access to rehabilitation therapies and the impact of changes in therapy access on the physical and mental well-being of children with motor impairment and their caregivers. DESIGN: Caregivers of children younger than 18 yrs with childhood-onset motor impairment (primarily cerebral palsy) completed an anonymous survey through the online platform REDCap between May 5 and July 13, 2020. RESULTS: The survey was completed by 102 participants. Before the pandemic, 92 of 102 children (90%) were receiving one or more therapies; at the time surveyed, 55 children (54%) were receiving any therapies (P < 0.001). More than 40% of the sample reported increased child stress, decreased physical activity, and/or decline in mobility/movement. Participants who reported a decrease in number of therapies at the time surveyed more frequently reported lower satisfaction with treatment delivery (P < 0.001), a decline in child's mobility (P = 0.001), and increased caregiver stress (P = 0.004). Five qualitative themes were identified from open-ended question responses related to therapies and well-being. CONCLUSIONS: Access to pediatric rehabilitation therapies was disrupted during COVID-19. Disrupted access may be related to impact on physical and mental health. With the expansion of telehealth, caregiver and child feedback should be incorporated to optimize benefit.

The impact of disease and sociodemographic background on children suffering from cerebral palsy / A betegség és a szociodemográfiai háttér hatása a cerebralis bénulásban szenvedo gyermekek életminoségére.

Összefoglaló. Bevezetés: A kutatócsoport 99 fo, cerebralis paresisben (CP) szenvedo gyermek (8-18 éves) önállóan közölt életminoségét értékelte, és az eredményeket összehasonlította egy 237 fos kontrollcsoport adataival, amelyek hasonló életkorú, egészséges általános populációhoz tartozó gyermekektol származtak. Célkituzés: A kutatás célja annak megismerése volt, hogy a CP-ben szenvedo gyermekek hogyan vélekednek egészségi állapotukról és társadalmi helyzetükrol. Módszer: Életminoség-kérdoív alkalmazása. Betegségspecifikus és társadalmi-demográfiai mutatók mérése, kiértékelése. Eredmények: Az CP-ben szenvedo gyermekek és szüleik az egészséggel kapcsolatos életminoséget rosszabbnak ítélték meg, mint társaik. Eredményeink azt mutatják, hogy a noi nem, a rosszabb motoros funkció és a komorbiditások (epilepszia, incontinentia és intellektuális károsodás) negatív hatású. A szüloi vélemény alkalmas volt proxyjelentésként a korreláció mért erossége miatt. Figyelemre méltó, hogy az agyi bénulás típusai közül az egyoldali spasticus CP-ben szenvedo gyermekek életminoség-értéke a legalacsonyabb. A válaszadók valószínuleg a test két oldala között lévo funkcionális különbséget érezték. A szellemi fogyatékosság a betegpopuláció több mint felénél fordult elo. Testvéreik között a mentális betegség 5,7-szer gyakoribb. A CP-s gyerekek családi környezete sokkal hátrányosabb volt, mint az egészséges gyermekeké. A kutatás eredményei alapján megállapítható, hogy a szülo alacsonyabb iskolai végzettsége és munkaeropiaci inaktivitása, valamint az egyszülos család a CP-s gyerekeknél szignifikánsan magasabb arányban fordult elo, és ezek a tényezok negatív hatást gyakoroltak az életminoségre. Következtetés: A fogyatékkal élo gyermekek életminoségét a betegség és a szociodemográfiai környezet egyaránt befolyásolja. Orv Hetil. 2021; 162(7): 269-279. INTRODUCTION: Self-reported health-related quality of life (HRQoL) of 99 children (8-18 years) with cerebral palsy (CP) was assessed and compared with 237, age-matched healthy control children from the general population. OBJECTIVE: The aim was to find out the opinions of children with CP about their health status and social condition. METHOD: Assessment of quality of life questionnaire was carried out. Measurements of disease-specific and sociodemographic variables were done. RESULTS: Children with CP and their parents rated HRQoL poorer than their counterparts. Our results show that female sex, worse gross motor function and comorbidities (epilepsy, incontinence and intellectual impairment) had negative impact. The parental opinion was suitable as proxy report because of the measured strength of the correlation. Among the types of CP, interestingly, children with unilateral spastic CP had the poorest HRQoL. They were likely to feel a functional difference between the two sides of the body. Intellectual disability occurred in more than half of our patient population. Among their siblings, mental illness is 5.7 times more common. The family environment was much more disadvantageous than in the case of healthy children. As our study shows, lower education, inactive status in the labour market and single-parent family occurred at a much higher rate and worsened the quality of life. CONCLUSION: Quality of life of children with disability was influenced by both the sociodemographic background and the disease. Orv Hetil. 2021; 162(7): 269-279.

Participation predictors for leisure-time physical activity intervention in children with cerebral palsy.

AIM: To determine the predictors of magnitude of change in response to a participation-focused leisure-time physical activity intervention in children with cerebral palsy (CP) using the ParticiPAte CP protocol. METHOD: We included 33 children (16 males, 17 females) aged 8 to 12 years (mean age=10y, SD=1y 6mo) with CP with pre/postintervention data from a wait-list randomized trial. The hypothesized linear predictors of change in primary outcomes (Canadian Occupational Performance Measure [COPM]-performance and COPM-satisfaction, Belief in Goal Self-Competence Scale (BiGSS), and minutes per day moderate-to-vigorous physical activity [MVPA]) were: age; Gross Motor Function Classification System level; comorbid autism spectrum disorder (ASD); Goal Attainment Scaling T score; Problems in Schools Questionnaire; Physical Activity Climate Questionnaire; Motives for Physical Activities Measure-Revised; and stage of behaviour change. Multivariable models were selected using the Bayesian information criterion. RESULTS: Overcoming barriers to participation, age, and comorbid ASD explained 49% of the variance in change in COPM-performance. Being motivated by interest and/or enjoyment and age explained 32% of the variance in change in COPM-satisfaction. Being motivated by physical activity competence or appearance (extrinsic motivation) explained 24% of the variance in change in BiGSS. Parental autonomy supportiveness, overcoming barriers to participation, appearance motivation, and baseline MVPA explained 59% of the variance in change in MVPA. INTERPRETATION: These findings support a behaviour paradigm for conceptualizing physical activity in children with CP. WHAT THIS PAPER ADDS: Children who met their treatment goals showed a greater increase in physical activity participation. Children who were more intrinsically motivated by physical activity at baseline improved more. Being older and having a comorbid diagnosis of autism spectrum disorder were associated with an attenuated effect of the therapy.

Robotic assessment of rapid motor decision making in children with perinatal stroke.

BACKGROUND: Activities of daily living frequently require children to make rapid decisions and execute desired motor actions while inhibiting unwanted actions. Children with hemiparetic cerebral palsy due to perinatal stroke may have deficits in executive functioning in addition to motor impairments. The objective of this study was to use a robotic object hit and avoid task to assess the ability of children with hemiparetic cerebral palsy to make rapid motor decisions. METHODS: Forty-five children with hemiparetic cerebral palsy due to perinatal stroke and 146 typically developing children (both groups ages 6-19 years) completed a robotic object hit and avoid task using the Kinarm Exoskeleton. Objects of different shapes fell from the top of the screen with increasing speed and frequency. Children were instructed to hit two specific target shapes with either hand, while avoiding six distractor shapes. The number of targets and distractors hit were compared between children with hemiparetic cerebral palsy and typically developing children, accounting for age effects. We also compared performance to a simpler object hit task where there were no distractors. RESULTS: We found that children with hemiparetic cerebral palsy hit a greater proportion of total distractors compared to typically developing children, demonstrating impairments in inhibitory control. Performance for all children improved with age. Children with hemiparetic cerebral palsy hit a greater percentage of targets with each arm on the more complex object hit and avoid task compared to the simpler object hit task, which was not found in typically developing children. CONCLUSIONS: Children with hemiparetic cerebral palsy due to perinatal stroke demonstrated impairments in rapid motor decision making including inhibitory control, which can impede their ability to perform real-world tasks. Therapies that address both motor performance and executive functions are necessary to maximize function in children with hemiparetic cerebral palsy.

Participation in Leisure Activities by Portuguese Children With Cerebral Palsy.

Leisure participation contributes to the health and wellbeing of children with and without physical disabilities. In the present cross-sectional study, we aimed to assess the influence of child and family factors on leisure activity participation of children with cerebral palsy (CP) aged 8-18 years. A convenience sample of 69 participants with CP (M age = 12.75 years, SD = 2.95; 45 males) responded to the Children's Assessment of Participation and Enjoyment questionnaire to report participation diversity, frequency, companies, environment and enjoyment in leisure activities. From these questionnaires, we used descriptive statistics to summarize overall participation, two activity domains (formal and informal) and five activity types (recreational, social, active physical, skill-based, and self-improvement). Regression analysis assessed child and family factors' influence on participation. On average, children with CP were involved in 21 leisure activities in the last four months. Within activity types, social and recreational activities were the most frequently reported. Participation in physical and skill-based activities was low. Overall children with CP experienced high enjoyment with engagement in leisure activities. Collectively, factors of age, cognitive function, gross motor function, and mother's education level predicted 33% of activity diversity and 30% of activity frequency. We concluded that children with CP show diverse leisure activity participation and high leisure activity enjoyment. Health, education and sports professionals should consider the child's functional profile and family context when promoting participation.

High-level motor skills assessment for ambulant children with cerebral palsy: a systematic review and decision tree.

AIM: To examine the psychometric evidence for high-level motor skills assessment tools for ambulant, school-aged children with cerebral palsy (CP). METHOD: We searched five databases for population (children with CP aged 5-18y in Gross Motor Function Classification System levels I and II), assessment focus (high-level motor skills), and psychometric evidence. We evaluated evidence strength using the number of studies, quality, and conduct according to COnsensus-based Standards for the selection of health status Measurement INstruments checklists. RESULTS: Eleven assessments (39 studies) met the criteria. Seven high-level motor skills assessment items (Muscle Power Sprint Test, 10m Shuttle Run Test, 10×5m Sprint Test, vertical jump, standing broad jump, seated throw, and Timed Up and Down Stairs) had strong validity and responsiveness evidence. Jumping items and seated throw lacked reliability data. Four high-level motor skills assessment batteries (Functional Strength Measure in CP, Gross Motor Function Measure-Challenge, Peabody Developmental Motor Scale, and Test of Gross Motor Development, Second Edition) had moderate-to-strong validity and/or reliability evidence. Responsiveness data were only available for the Gross Motor Function Measure-Challenge battery. The decision tree was developed with five levels: clinical feasibility, relevance, tool design, clinical utility, and psychometric properties. INTERPRETATION: High-level motor skills assessment tools have strong psychometric evidence for ambulant, school-aged children with CP. The decision tree can assist clinicians and researchers in identifying appropriate tools to measure high-level motor skills. WHAT THIS PAPER ADDS: An evidence-based decision tree guides the selection of appropriate high-level motor skills assessment tools. Seven high-level motor skills assessment items have strong psychometric evidence and clinical utility for ambulant children with cerebral palsy. Four high-level motor skills assessment batteries with recreation and mobility items have emerging psychometric evidence in this population.

Cerebral palsy in Canada, 2011-2031: results of a microsimulation modelling study of epidemiological and cost impacts. / La paralysie cérébrale au Canada, 2011-2031 : résultats d'une étude de modélisation par microsimulation des répercussions épidémiologiques et économiques.

INTRODUCTION: The objective of our study was to present model-based estimates and projections on current and future health and economic impacts of cerebral palsy in Canada over a 20-year time horizon (2011-2031). METHODS: We used Statistics Canada's Population Health Model (POHEM)-Neurological to simulate individuals' disease states, risk factors and health determinants and to describe and project health outcomes, including disease incidence, prevalence, life expectancy, health-adjusted life expectancy, health-related quality of life and health care costs over the life cycle of Canadians. Cerebral palsy cases were identified from British Columbia's health administrative data sources. A population-based cohort was then used to generate the incidence and mortality rates, enabling the projection of future incidence and mortality rates. A utility-based measure (Health Utilities Index Mark 3) was also included in the model to reflect various states of functional health to allow projections of health-related quality of life. Finally, we estimated caregiving parameters and health care costs from Canadian national surveys and health administrative data and included them as model parameters to assess the health and economic impact of cerebral palsy. RESULTS: Although the overall crude incidence rate of cerebral palsy is projected to remain stable, newly diagnosed cases of cerebral palsy will rise from approximately 1800 in 2011 to nearly 2200 in 2031. In addition, the number of people with the condition is expected to increase from more than 75 000 in 2011 to more than 94 000 in 2031. Direct health care costs in constant 2010 Canadian dollars were about $11 700 for children with cerebral palsy aged 1-4 years versus about $600 for those without the condition. In addition, people with cerebral palsy tend to have longer periods in poorer health-related quality of life. CONCLUSION: Individuals with cerebral palsy will continue to face challenges related to an ongoing need for specialized medical care and a rising need for supportive services. Our study offers important insights into future costs and impacts associated with cerebral palsy and provides valuable information that could be used to develop targeted health programs and strategies for Canadians living with this condition.

Health-related quality of life and upper-limb impairment in children with cerebral palsy: developing a mapping algorithm.

AIM: To: (1) investigate the relationship between upper-limb impairment and health-related quality of life (HRQoL) for children with cerebral palsy and (2) develop a mapping algorithm from the Cerebral Palsy Quality of Life Questionnaire for Children (CPQoL-Child) onto the Child Health Utility 9D (CHU9D) measure. METHOD: The associations between physical and upper-limb classifications and HRQoL of 76 children (40 females, 36 males) aged 6 to 15 years (mean age 9 years 7 months [SD 3y]) were assessed. Five statistical techniques were developed and tested, which predicted the CHU9D scores from the CPQoL-Child total/domain scores, age, and sex. RESULTS: Most participants had mild impairments. The Manual Ability Classification System (MACS) level was significantly negatively correlated with CHU9D and CPQoL-Child (r=-0.388 and r=-0.464 respectively). There was a negative correlation between the Neurological Hand Deformity Classification (NHDC) and CPQoL-Child (r=-0.476, p<0.05). The generalized linear model with participation, pain domain, and age had the highest predictive accuracy. INTERPRETATION: The weak negative correlations between classification levels and HRQoL measures may be explained by the restricted range of impairment levels of the participants. The MACS and NHDC explained the impact of upper-limb impairment on HRQoL better than the other classifications. The generalized linear model with participation, pain, and age is the suggested mapping algorithm. The suggested mapping algorithm will facilitate the use of CPQoL-Child for economic evaluation and can be used to conduct cost-utility analyses. WHAT THIS PAPER ADDS: The Manual Ability Classification System and Neurological Hand Deformity Classification were the best predictors of health-related quality of life measures. Age and Cerebral Palsy Quality of Life Questionnaire for Children participation and pain domain scores can predict Child Health Utility 9D scores.

Assessing participation of children with acquired brain injury and cerebral palsy: a systematic review of measurement properties.

AIM: To examine which instruments used to assess participation of children with acquired brain injury (ABI) or cerebral palsy (CP) align with attendance and/or involvement constructs of participation; and to systematically review measurement properties of these instruments in children with ABI or CP, to guide instrument selection. METHOD: Five databases were searched. Instruments that quantified 'attendance' and/or 'involvement' aspects of participation according to the family of participation-related constructs were selected. Data on measurement properties were extracted and methodological quality of the studies assessed. RESULTS: Thirty-seven instruments were used to assess participation in children with ABI or CP. Of those, 12 measured attendance and/or involvement. The reliability, validity, and responsiveness of eight of these instruments were examined in 14 studies with children with ABI or CP. Sufficient measurement properties were reported for most of the measures, but no instrument had been assessed on all relevant properties. Moreover, most psychometric studies have marked methodological limitations. INTERPRETATION: Instruments to assess participation of children with ABI or CP should be selected carefully, as many available measures do not align with attendance and/or involvement. Evidence for measurement properties is limited, mainly caused by low methodological study quality. Future studies should follow recommended methodological guidelines. WHAT THIS PAPER ADDS: Twelve instruments used to assess participation of children with acquired brain injury (ABI) or cerebral palsy (CP) aligned with attendance/involvement. Seven instruments have some psychometric evidence supporting their use with children with CP. For children with ABI, only the Child and Adolescent Scale of Participation has shown preliminary evidence of measurement properties.

A systematic review on quality of life assessment in adults with cerebral palsy: Challenging issues and a call for research.

BACKGROUND AND AIMS: Little is known about the quality of life (QoL) of adults with cerebral palsy (CP). This systematic review aimed to examine the extent to which methodological best practices have been applied to achieve valid and informative QoL assessments for this population. METHODS AND PROCEDURES: Systematic search identified 1097 non-duplicated, quantitative articles assessing self- and/or proxy-reported QoL in samples of adults with CP. Eighteen studies were included and data extraction was conducted for sampling characteristics, selection of informants (self- and proxy-reports), adequacy of administered measures, and examination of age-related specificities. OUTCOMES AND RESULTS: The results revealed discrepancies between conceptual definitions of QoL and their measurement approaches in CP. Most papers relied on self-reports. Most studies were cross-sectional and often based on relatively small samples; the variable of age was considered inconsistently in statistical analyses. CONCLUSIONS AND IMPLICATIONS: Future strategies to improve the validity and applicability of QoL assessments of adults with CP would include: using a clear definition of QoL aligned with the measurement employed; considering proxy-reports whenever appropriate, to encompass larger samples and a wider range of ability; and using age-stratified analyses, in order to deepen understanding of potentially modifiable variables and paths linked to QoL outcomes.

Assessment of Anxiety and Depression in Polish Primary Parental Caregivers of Children with Cerebral Palsy Compared to a Control Group, as well as Identification of Selected Predictors.

BACKGROUND: Taking care of a child with Cerebral Palsy (CP) may be linked with adverse effects in the parents' physical and mental health. The causes of anxiety and depression symptoms associated with childcare are still not fully understood. AIM: To assess the intensity of anxiety and depression symptoms in parents of children with CP compared to a control group and to identify selected mental health predictors. DESIGN AND METHODS: Data were collected from 301 respondents, including 190 parents of children with CP (study group) and 111 parents taking care of children developing normally (control group). Intensity of anxiety and depression was rated using the Hospital Anxiety and Depression Scale (HADS) scale. Gross Motor Function Classification System for Cerebral Palsy (GMFCS), Sense of Coherence Scale (SOC-29), Berlin Support Social Scales (BSSS) scales and a specially designed questionnaire were used to assess the predictors. The investigated variables included the children's and the parents' characteristics, as well as environmental factors. The analyses applied Spearman's rank correlation coefficient, M(SD) as well as multiple regression. RESULTS: The level of anxiety and depression was clearly higher in the parents of children with CP-the mean levels of anxiety and depression in the study group and the controls amounted to 8.1 vs. 4.7 and 6.8 vs. 3.7, respectively. The factors associated with intensity of anxiety and depression in the parents of children with CP included lack of social support, mainly perceived and received support, unsatisfying parental health status, poor economic status of the family, as well as difficult living conditions, sense of coherence, loneliness, the parent's gender, and the child's intellectual disability. CONCLUSIONS: Identification of significant anxiety and depression predictors, understood as modifiable factors, should be considered in determining and planning comprehensive support for a child with CP and his/her primary parental caregiver.

Influence of adapted hip-hop dancing on quality of life and social participation among children/adolescents with cerebral palsy.

OBJECTIVE: To describe the influence of adapted hip-hop dancing on the quality of life (QoL) and biopsychosocial profile of children/adolescents with cerebral palsy (CP). METHODS: Pilot study including 18 children/adolescents with CP and Gross Motor Function Classification System levels I and II. Nine participants took part in an adapted hip-hop dance practice (study group; SG), and nine others served as the control group (CG). All participants were assessed with the Pediatric Outcomes Data Collection Instrument and the Child Behavior Checklist at baseline and after at least three months of dance practice and a public performance (SG) or a similar period without intervention (CG). RESULTS: Improvement in QoL was observed in the SG in the domains of transfer and basic mobility (p = 0.00*), sporting and physical function (p = 0.04*), and global function and symptoms (p = 0.01*). In the SG, there was a reduction in emotional and behavioral problems and an increase in social competence in the biopsychosocial profile. Greater participation in adapted hip-hop dancing was associated with a greater gain in the transfer and basic mobility domains (p = 0.05*) of the Pediatric Outcomes Data Collection Instrument and in the activities (p = 0.05*) and social (p = 0.04*) scales of the Child Behavior Checklist. CONCLUSIONS: Children/adolescents with CP participating in adapted hip-hop dance practice showed improvement in QoL and biopsychosocial profile scores.