Perception of pain in patients with adolescent cerebral palsy: self report or parent’s report

2021 ◽  
pp. 1-6
Author(s):  
Fatma Özcan ◽  
Sibel Ünsal Delialioğlu ◽  
Sumru Özel ◽  
Yasin Demir
Keyword(s):  
Cerebral Palsy ◽  
Self Report

Children with cerebral palsy: Family and parent demographic characteristics and family strengths in Greece and Italy

2020 ◽  
pp. 135910531990027
Author(s):  
Assimina Tsibidaki
Keyword(s):  
Cerebral Palsy ◽  
Data Collection ◽  
Well Being ◽  
Demographic Characteristics ◽  
Self Report ◽  
Family Strengths ◽  
Biological Child ◽  
The Family ◽  
Children With Cerebral Palsy ◽  
High Sense

The study focuses on families raising a child with cerebral palsy to investigate family strengths and their association with family and parent demographic characteristics in Greece and Italy. Participants were 120 parents raising a biological child with cerebral palsy. Data collection used a self-report questionnaire and the Family Strengths Inventory. According to the findings, families share a high sense of family strengths, which is mainly represented in the high sense of ‘pride’ and ‘accord’. In addition, demographic characteristics seem to be important predictors of well-being and strengthen parents and families raising a child with cerebral palsy.

scholarly journals Motor Function Predicts Parent-Reported Musculoskeletal Pain in Children with Cerebral Palsy

2013 ◽  
Vol 18 (6) ◽  
pp. 323-327 ◽  
Author(s):  
Chantel C Barney ◽  
Linda E Krach ◽  
Patrick F Rivard ◽  
John L Belew ◽  
Frank J Symons
Keyword(s):  
Cerebral Palsy ◽  
Activities Of Daily Living ◽  
Musculoskeletal Pain ◽  
Motor Function ◽  
Daily Living ◽  
Brief Pain Inventory ◽  
Self Report ◽  
General Description ◽  
Motor Impairments ◽  
Gmfcs Level

BACKGROUND: The relationship between pain and motor function is not well understood, especially for children and adolescents with communication and motor impairments associated with cerebral palsy (CP).OBJECTIVES: To determine whether a predictive relationship between motor function and musculoskeletal pain exists in children with CP.METHODS: Following informed consent, caregivers of 34 pediatric patients with CP (mean [± SD] age 9.37±4.49 years; 80.0% male) completed pain- and function-related measures. Parents completed the Dalhousie Pain Interview and the Brief Pain Inventory based on a one-week recall to determine whether pain had been experienced in the past week, its general description, possible cause, duration, frequency, intensity and interference with daily function. The Gross Motor Function Classification System (GMFCS) was used to classify the motor involvement of the child based on their functional ability and their need for assistive devices for mobility.RESULTS: GMFCS level significantly predicted parent-reported musculoskeletal pain frequency (P<0.02), duration (P=0.05) and intensity (P<0.01). Duration of pain was significantly related to interference with activities of daily living (P<0.05).CONCLUSIONS: Children with CP with greater motor involvement, as indexed by GMFCS level, may be at risk for increased pain (intensity, frequency and duration) that interfers with activities of daily living. The clinical index of suspicion should be raised accordingly when evaluating children with developmental disability who cannot self-report reliably.

scholarly journals PENGARUH TERAPI KELOMPOK BERBASIS MINDFUL PARENTING TERHADAP BEBAN PSIKOLOGIS IBU YANG MEMILIKI ANAK CEREBRAL PALSY

2020 ◽  
Vol 4 (3) ◽  
pp. 210
Author(s):  
I Rai Hardika ◽  
Diah Widiawati
Keyword(s):  
Cerebral Palsy ◽  
Mindful Parenting ◽  
Self Report ◽  
Rank Test ◽  
Signed Rank ◽  
Wilcoxon Signed Rank Test ◽  
Signed Rank Test ◽  
Convenience Sampling

Penelitian ini adalah upaya untuk memberikan keterampilan bagi ibu yang memiliki anak dengan cerebral palsy dalam mengatasi kondisi stres pengasuhan yang dialaminya. Stres pengasuhan menyebabkan munculnya beban psikologis yang pada dasarnya berdampak langsung pada kehidupan ibu sebagai pengasuh utama. Penelitian ini menyasar pengaruh yang diberikan oleh program keterampilan mindful parenting terhadap beban psikologis ibu yang memiliki anak dengan cerebral palsy. Penelitian ini menggunakan pendekan eksperimen dengan desain one-group pretest-posttest design with double pretest. Variabel bebas penelitian yaitu program mindful parenting dan variabel tergantung penelitian yaitu beban psikologis. Adapun cek manipulasi dilakukan menggunakan skala mindful parenting. Latar belakang kelompok dipilih sebagai bagian dari pengumpulan subjek penelitian. Pilihan ini didasarkan pada pengamatan bahwa proses terapi yang melibatkan anak dengan cerebral palsymembutuhkan waktu yang panjang sehingga proses tersebut membentuk ikatan secara tidak langsung antara orang tua yang mengupayakan terapi. Penelitian dilakukan di salah satu kelompok terapi cerebral palsy di B dengan jumlah 6 orang partisipan dengan tenik convenience sampling. Intervensi dilakukan dalam bentuk kelompok terapi dalam pelaksanaan program keterampilan mindful parenting dalam 8 sesi selama 2 minggu. Pengujian hipotesis menggunakan Wilcoxon signed rank test dengan disertai data kualitatif menggunakan observasi, wawancara, dan self-report. Uji hipotesis menunjukkan bahwa program keterampilan mindful parenting secara signifikan menurunkan beban psikologis partisipan dengan nilai z = -2,201 (p = 0,028; p < 0,05). Program mindful parenting memiliki pengaruh terhadap penurunan beban psikologis sebesar 63% (r = -0,63). Berdasarkan analisis tiap aspek beban psikologis disimpulkan bahwa beban psikologis partisipan mengalami perubahan dalam semua aspek. Hal ini didukung oleh peningkatan praktik keterampilan mindfulness yang signifikan dari partisipan. Dapat disimpulkan bahwa orang tua yang mempraktikkan keterampilan mindful parenting dapat membantu mereka dalam menurunkan beban psikologis yang dialami dalam pengasuhan dengan cerebral palsy.

scholarly journals Quality of life of adolescents with cerebral palsy: agreement between self-report and caregiver’s report*

2020 ◽  
Vol 28 ◽  
Author(s):  
Mariana Ceravolo Ferreira ◽  
Nathália Ribeiro Garcia ◽  
Cejane Oliveira Martins Prudente ◽  
Maysa Ferreira Martins Ribeiro
Keyword(s):  
Quality Of Life ◽  
Cerebral Palsy ◽  
Physical Health ◽  
Cross Sectional Study ◽  
The Self ◽  
Self Report ◽  
Cross Sectional ◽  
School Activities ◽  
Pedsql 4.0

Objective: to assess the quality of life (QOL) of adolescents with cerebral palsy (CP) by self-report and by the caregiver’s report, and to analyze the agreement between these reports. Method: cross-sectional study conducted with 101 adolescents with CP and 101 caregivers. Both answered the Pediatric Quality of Life Inventory (PedsQL), module 4.0 - Generic (PedsQL 4.0) and module 3.0 - PC (PedsQL 3.0). Agreement between reports was analyzed using the Mann-Whitney test and the intra-class correlation coefficient (ICC) (p<0.05). Results: the lowest scores were in physical health, school activities and fatigue in the self-report. The lowest scores were in physical health and daily activities, in the caregivers’ report. Perceptions among adolescents and caregivers differed in physical health, movement and equilibrium, daily and school activities, with a lower score for caregivers in all of them. The agreement between the self-report and the caregivers’ report was poor (ICC<0.44) and in both instruments, the caregivers’ report was less optimistic. Conclusion: physical health is the most impaired domain of the QOL of adolescents with CP, both in the self-report and in the caregivers’ report. However, there is poor agreement between these reports, emphasizing that the use of the caregivers’ report should be cautious.

Case Report: Embodied Virtual Reality Mirror Visual Feedback for an Adult with Cerebral Palsy (Preprint)

2020 ◽  
Author(s):  
Kim Bullock ◽  
Julie Muccini ◽  
Helen Bronte Stewart ◽  
Jeremy Bailenson ◽  
Margot Paul ◽  
...  
Keyword(s):  
Virtual Reality ◽  
Cerebral Palsy ◽  
Case Report ◽  
Visual Feedback ◽  
Rating Scales ◽  
Self Report ◽  
Mirror Visual Feedback ◽  
Patient Reported ◽  
Mirror Box ◽  
Improved Function

BACKGROUND Virtual reality-assisted physical therapy is a promising treatment for children with cerebral palsy. However, thus far, it has not been used for adult patients. OBJECTIVE The following case report examines the safety and feasibility of customized virtual reality interventions for an adult patient with cerebral palsy who was experiencing right sided pain, weakness, dystonias. METHODS This research included two phases of intervention, which were based on the principles of mirror visual feedback, occasionally termed “mirror box therapy.” The patient used self-report rating scales to monitor anxiety and depression levels, as well as provided verbal feedback regarding pain levels. RESULTS The treatments were well tolerated, and the patient reported improved function in the injured limb. However, the duration of pain relief was only 2–4 days between sessions, causing the patient to require ongoing in office virtual reality treatments. CONCLUSIONS The implications of these findings for the future treatment of such patients are discussed.

Feasibility and Concurrent Validity of Cerebral Palsy Quality of Life for Children (CP QOL-Child) in Thai Version

2021 ◽  
Vol 104 (1) ◽  
pp. 136-140
Keyword(s):  
Quality Of Life ◽  
Cerebral Palsy ◽  
Concurrent Validity ◽  
Correlation Coefficients ◽  
Self Report ◽  
Significance Level ◽  
Pedsql 4.0 ◽  
Missing Items ◽  
Parent Proxy

Background: The Cerebral Palsy Quality of Life for Children (CP QOL-Child) questionnaires are condition-specific QOL measures for children with CP focusing on perspectives of children with CP on their quality of life, not on their physical difficulties. The perspectives of well-being are core concepts of quality of life. The CP QOL-Child has already been translated in Thai and the reliability is excellent. The validity after the translation has not been conducted and is required. therefore, it is needed to examine the validity to ensure the clinical practicality. Objective: To examine feasibility and concurrent validity of the CP QOL-Child (Thai version). Materials and Methods: Eighty-five primary caregivers of 4- to 12-year-old children and 65 children between 9- and 12-years-old, who passed the inclusion criteria, completed three questionnaires including the CP QOL-Child (Thai version), the PedsQL 4.0 Generic Core Scales, and the PedsQL 3.0 CP module (Thai version). Results: For feasibility of the CP QOL-Child, no missing items were found in any items for the child self-report. For parent proxy report, missing items were scattered and from 1.2% to 7.1%. For concurrent validity, according to the total scores of both versions, the self-report and the parent proxy, the correlation coefficients between CP QOL-Child and PedsQL 4.0 Generic Core Scales were 0.23 to 0.25 meaning no or little correlations, at significance level of 0.05. The correlation coefficients between the CP QOL-Child and the PedsQL CP module were 0.38 to 0.49, meaning fair correlations, at significance level of 0.01. Conclusion: The feasibility of the CP QOL-Child (Thai version) was reportedly acceptable. The concurrent validity support that the CP QOL-Child may not measure the quality of life at the same constructs as the PedsQL. The CP QOL-Child asks the client’s perspectives of quality of life (QOL) while both PedsQL modules ask the client’s difficulties that might relate to QOL. Keywords: Health-related quality of life, CP QOL-Child, Cerebral palsy, Feasibility, Validity

scholarly journals Children with Cerebral Palsy and their Quality Of Life in Nepal

2018 ◽  
Vol 37 (2) ◽  
pp. 122-128
Author(s):  
Niti Shrestha ◽  
Sabitra Paudel ◽  
Ritesh Thapa
Keyword(s):  
Quality Of Life ◽  
Cerebral Palsy ◽  
Classification System ◽  
Cross Sectional Study ◽  
Self Report ◽  
Emotional Wellbeing ◽  
Related Factors ◽  
Cross Sectional ◽  
Children With Cerebral Palsy

Introduction: Cerebral Palsy (CP) may affect individual’s everyday life and it may have significant impact on quality of life (QOL). The objective of this study was to assess the quality of life of children with Cerebral Palsy in Nepal.Material and Methods: This is a descriptive cross sectional study that involved 42 children between 4 and 12 years of age. The Socio-demographic variables were obtained from interviews and CP related factors were obtained from medical reports. Validated CP-QOL child self-report and parent proxy version of questionnaire was used for data collection. Severity was assessed using Gross Motor Function Classification System (GMFCS), Manual Ability Classification System (MACS), Communication function Classification System (CFCS) and ICD-10 Classification System. Data were summarized using descriptive statistics. Kruskal Wallis and Man Whitney was used to find out association between Cerebral Palsy related factors and Quality of Life.Results: 57.1% (n=24) were between 8 and12 years of age and 42.9% (n=18) were between 4 and 8 years of age. Overall QOL was reported to be fairly good. Both the child and Caregiver gave highest score on “Social wellbeing and acceptance” and “Emotional wellbeing and self-esteem domain” and Lowest Point in “Pain and Impact of disability”. This implies that Psychosocial Quality of Life is good in children with CP. Quality of Life as reported by child was better than Quality of Life reported by Caregiver.Conclusion: Overall QOL is fairly good in children with CP. However, Pain and impact of disability impairs QOL.

scholarly journals Promoting School Engagement in Children with Cerebral Palsy: A Narrative Based Program

2019 ◽  
Vol 16 (19) ◽  
pp. 3634 ◽  
Author(s):  
Armanda Pereira ◽  
Pedro Rosário ◽  
Sílvia Lopes ◽  
Tânia Moreira ◽  
Paula Magalhães ◽  
...  
Keyword(s):  
Cerebral Palsy ◽  
Executive Function ◽  
School Engagement ◽  
Intervention Program ◽  
Self Regulation ◽  
Self Report ◽  
Three Dimensions ◽  
Study Results ◽  
Main Effect ◽  
Children With Cerebral Palsy

This study assessed the efficacy of an educational program focused on the promotion of school engagement in children with Cerebral Palsy. A 9 weeks, narrative-based intervention program, with a pre-post neuropsychological and self-report evaluation, was developed with a dual focus: a self-regulation theoretical model and executive function stimulation. Fifteen children with Cerebral Palsy participated in the study. Results showed a significant main effect of time (F(2.82) = 6.04, p = 0.0066, partial η2 = 0.30; F(2.82) = 9.91, p = 0.0006, partial η2 = 0.41; F(2.82) = 26.90, p < 0.0001, partial η2 = 0.66) in the three dimensions of school engagement. Findings indicate that the program to train self-regulated competences and executive function skills was efficacious in promoting school engagement in children with Cerebral Palsy. Educational implications were discussed.

scholarly journals Health-related quality of life in children and adolescents with cerebral palsy

2017 ◽  
Vol 56 (1) ◽  
pp. 1-10 ◽  
Author(s):  
Anja Radsel ◽  
Damjan Osredkar ◽  
David Neubauer
Keyword(s):  
Quality Of Life ◽  
Cerebral Palsy ◽  
Children And Adolescents ◽  
Social Inclusion ◽  
Self Report ◽  
Health Related Quality ◽  
Related Quality ◽  
Health Related ◽  
The Mean

Abstract Introduction In a cross-sectional cohort study, health-related quality of life of Slovenian children and adolescents with cerebral palsy was examined, and factors associated with it have been identified. Methods Caregivers of 122 children and adolescents with cerebral palsy were addressed to fill out proxy versions of HRQoL questionnaires (DISABKIDS generic and cerebral palsy module). Children and adolescents without cognitive deficit were asked to fill out the self-report versions. Results Ninety-one families of 43 children (the mean age is 10 years, 6 months, SD 1.2; 26 males and 17 females) and 48 adolescents (the mean age is 14 years, SD 0.9; 23 males and 25 females) completed proxyreports. Forty-eight individuals were able to self-report (26 children and 22 adolescents). Health-related quality of life was perceived as good. Self-reporting participants scored higher than their caregivers (mean score 75.6, SD 15.9 versus mean 72.3, SD 17.9; p=0.048). Adolescents scored lower than children in all domains (mean score 69.4, SD 19.4 versus mean 80.8, SD 10.0; p=0.01). Higher age (p<0.001), pain (p<0.001) and disturbed sleep (p=0.002) were strong predictors of worse health-related quality of life. Social Inclusion and Independence domains received the lowest scores. Conclusions Slovenian children and adolescents with cerebral palsy have a good health-related quality of life, with Social Inclusion and Independence being the weakest domains. Children reported higher scores than adolescents or their caretakers. Pain was the strongest predictor of poor health-related quality of life.

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