exudates and Cerebral-Palsy

To examine the relationship between affiliate stigma, stress, and perceived quality of life among parents of children with cerebral palsy (CP).. Surveys (Study 1) and semi-structured interviews (Study 2) were used to collect data. Thirty-eight respondents completed the Affiliate Stigma Scale (ASS), Caregiver Burden Inventory (CBI), and Care-related Quality of Life (CarerQol) scales (GMFCS). Eleven respondents took part in semi-structured interviews, which were then thematically evaluated.. Parents did not feel stigmatized because they had a child with CP. However, parents needed some form of short-term relief from caregiving. After controlling for demographics, high stress respondents experienced high affiliate stigma whereas low stress respondents had better quality of life. Although the respondents with less stigma had a better quality of life, this effect was moderate. Three major themes emerged from the interviews.. Counseling, support groups, and helper services should be offered to parents. Also, healthcare professionals participating in CP rehabilitation, community-based rehabilitation, and health institutions should be educated on how to better help parents of children with CP.. There is a need in Malaysia to offer counseling, support groups, and assistance programs for parents of children with cerebral palsy.Healthcare professionals, who offer rehabilitation services to children with cerebral palsy, need greater awareness of the needs of families and caregivers and should be educated about how to best support them.There should be greater recognition of the importance of respite and relief from caregiving among Malaysian parents of children with cerebral palsy.

Topics: Caregivers; Cerebral Palsy; Child; Humans; Malaysia; Parents; Quality of Life

Topics: Caregivers; Cerebral Palsy; Child; Financial Stress; Humans; Malaysia; Retrospective Studies

Cerebral palsy (CP) is one of the most common causes of disability in childhood, leading to functional limitations and poor nutritional status. Families with CP children face challenges in providing proper care. Thus, accessibility of CP patients to health facilities is important to ensure that they can maintain regular visits to health facilities for proper treatment and care. The current study aimed to map the spatial distribution of CP in Johor, Malaysia and measure the accessibility of CP patients to nearby hospitals, health clinics and community-based rehabilitation centres. The study is based on CP cases in 2017 obtained from the Department of Social Welfare, Malaysia and analysed using the average nearest neighbour, buffer analysis and Kernel Density Estimation. Results indicate that there is generally good access to health care services for many of the CP children in Johor, but for 25% of those living more than 10 km away from the health clinics or community-based rehabilitation centres, regular visits can be a problem. This information should be used for targeted intervention and planning for health care strategies. Furthermore, information on hospital accessibility of CP children would allow for planning of proper and regular treatment for these patients. The study has shown that it is possible to improve the understanding of the distribution of CP cases by integrating spatial analysis using geographical information systems without relying on official information about the density of populations.

Topics: Cerebral Palsy; Child; Health Facilities; Health Services Accessibility; Humans; Malaysia; Spatial Analysis

Caregiving for children with cerebral palsy (CP) has proved to negatively impact on the physical and psychological well-being of their primary caregivers. The aim of the current study was to examine the overall impact of caregiving for children with CP on the primary caregivers' health-related quality of life (HRQOL) and family functioning, and to identify potential factors associated with primary caregivers' HRQOL and family functioning. The cross-sectional study involved a total of 159 primary caregivers of children with CP with a mean age of 42.8 ± 8.4 years. Demographic data and information on the physical and leisure activities of the primary caregivers were collected, and their quality of life (QOL) was measured based on the self-reported Pediatric Quality of Life Inventory Family Impact Module (PedsQL FIM). Primary caregivers in the current study have shown good HRQOL and family functioning, with scores of 82.4 and 85.3 out of 100, respectively. Through multiple linear regression analyses, the mother's level of education, family monthly income, sleeping problems in children with CP, and the existence of children with other types of disability have been identified as factors contributing to HRQOL and family functioning. The findings help set out the course for stakeholders to establish action to enhance the QOL of primary caregivers.

Topics: Adult; Caregivers; Cerebral Palsy; Child; Cross-Sectional Studies; Humans; Malaysia; Middle Aged; Quality of Life; Surveys and Questionnaires

To investigate the oral health and nutritional status of children with cerebral palsy (CP).. Oral health assessment included dental caries and dental plaque maturity scores (DPMS) while the nutritional assessment included children's height-for-age Z-score (HAZ), body mass index-for-age Z-score (BAZ), mid-upper-arm circumference (MUAC), nutrient intake, cariogenic food frequency (CFF) and daily sugar exposure (DSE). Ninety-three CP children were recruited. The prevalence of caries was 81.7% (95% CI: 72.7%-88.3%). The median (IQR) of the DMFT and dft scores were 0.5(4.0) and 3.0(8.0), respectively. Most of the participants had acid-producing plaque (90.3%), severely stunted (81.4%), and 45% were severely thin with acute malnutrition. Intakes of calcium, iron, zinc, vitamin A, vitamin D and total fat were below 77% of the Recommended Nutrient Intakes for Malaysian children (RNI 2017). Nine types of cariogenic foods/drinks were consumed moderately, and DSE indicated that 45% of the children were at moderate risk of dental caries.. Untreated dental caries, severe stunting and thinness were prevalent, and cariogenic foods/drinks were consumed moderately suggesting a moderate risk of caries. Therefore, controlling cariogenic food intake is crucial, but monitoring daily nutrient intake is needed for the optimum growth of children with CP.

Topics: Cerebral Palsy; Child; Dental Caries; Diet; Humans; Malaysia; Nutritional Status; Oral Health

Topics: Cerebral Palsy; Cesarean Section; Dissent and Disputes; Female; Fertilization in Vitro; Humans; Malaysia; Male; Malpractice; Negotiating; Patient Safety; Physician-Patient Relations; Pregnancy; Risk; Singapore; United Kingdom

The aim of the study was to compare the frequency and type of sleep disturbances in a group of Malaysian children aged 4 to 18 years with cerebral palsy (CP) with their nearest-age, able-bodied siblings and to identify factors associated with sleep disturbances.. The study was a case-control study of 109 children with CP (61 males, 48 females; mean age 9 y, SD 3 y 11 mo, range 4-18 y) and their healthy siblings (56 males, 53 females; mean age 10 y, SD 3 y 9 mo, range 4-18 y). The Sleep Disturbances Scale for Children (SDSC) questionnaire was completed by the main caregiver. In children with CP, multiple regression analysis was be used to determine factors related to higher Total SDSC sleep scores.. Ninety-seven children (89%) had spastic CP, 10 (9%) had dyskinetic CP, and two (2%) had mixed CP. Based on the Gross Motor Function Classification System (GMFSC), 34 patients (31%) were at GMFSC level I or II, 10 patients (9%) at level III, and 65 patients (60%) at level IV or V. Children with CP scored significantly higher than their siblings on Total SDSC and four SDSC subscale scores - difficulty in initiating and maintaining sleep, sleep breathing disorders, sleep-wake transition disorders, and sleep hyperhidrosis. Caregiver sleep duration of less than 7 hours (p=0.02) and caregiver sleep latency of more than 30 minutes (p=0.03) were significantly associated with higher Total SDSC scores. Co-sleeping was not a significant factor.. Sleep disturbances are more common in children with CP than in their siblings. Attention should be given to caregiver sleep when evaluating sleep disturbances in children with CP as this factor was shown to be associated with higher Total SDSC scores.

Topics: Adolescent; Age Factors; Caregivers; Case-Control Studies; Cerebral Palsy; Child; Child, Preschool; Female; Humans; Malaysia; Male; Regression Analysis; Severity of Illness Index; Sleep Wake Disorders; Surveys and Questionnaires

Cerebral Palsy (CP) describes a group of chronic conditions affecting body movement and muscle coordination caused by damage to one or more areas of the brain, occurring at any time during foetal development to infancy. This research was carried out to learn how parents of children with cerebral palsy (CP) had found and accessed services provided for them in Selangor and Kuala Lumpur. It was based in the Spastic Children's Association of Selangor and Federal Territory (SCAS&FT) among 96 of 201 parents of children who use the facilities and services provided by the SCAS&FT through questionnaires and face-to-face interviews. There was a satisfactory level of availability and accessibility of contacting and using the services provided by SCAS&FT in terms of respondent satisfaction. However, parents had varying levels of awareness of the different classes and activities carried out by the school. Efforts to improve knowledge regarding the services available for children with CP in the general population and among parents of these children should be promoted.

Topics: Cerebral Palsy; Health Services Accessibility; Humans; Infant; Interviews as Topic; Malaysia; Parents; Surveys and Questionnaires

A study was carried out to determine the clinical effectiveness of intramuscular botulinum toxin type A (BTX) in the treatment of spasticity or dystonia in 58 consecutive children with cerebral palsy (CP). The effectiveness of the treatment was determined by the reduction of spasticity and global parental perception scale. The mean age of treatment was six years and the most frequent aim of treatment (91.1%) was functional improvement. The median reduction of spasticity as measured by modified Ashworth scale was 1. The short term outcome was graded as excellent or good by 44.6% and satisfactory by 38.4% of parents. Patients with dyskinetic Cerebral Palsy had the best response. Adverse effects were minimal. BTX treatment is modestly effective in the majority of our patients with spastic and dyskinetic cerebral palsy.

Topics: Botulinum Toxins; Cerebral Palsy; Child; Child, Preschool; Female; Humans; Injections, Intramuscular; Malaysia; Male; Medical Audit; Outcome Assessment, Health Care; Poisons

To compare the linear growth and nutritional parameters of a group of Malaysian children with cerebral palsy (CP) against a group of controls, and to determine the nutritional, medical and sociodemographic factors associated with poor growth in children with CP.. The linear growth of 101 children with CP and of their healthy controls matched for age, sex and ethnicity was measured using upper-arm length (UAL). Nutritional parameters of weight, triceps skin-fold thickness and mid-arm circumference were also measured. Total caloric intake was assessed using a 24-h recall of a 3-day food intake and calculated as a percentage of the Recommended Daily Allowance. Multiple regression analysis was used to determine nutritional, medical and sociodemographic factors associated with poor growth (using z-scores of UAL) in children with CP.. Compared with the controls, children with CP had significantly lower mean UAL measurements (difference between means -1.1, 95% confidence interval -1.65 to - 0.59), weight (difference between means -6.0, 95% CI -7.66 to -4.34), mid-arm circumference (difference between means -1.3, 95% CI -2.06 to -0.56) and triceps skin-fold thickness (difference between means -2.5, 95% CI -3.5 to -1.43). Factors associated with low z-scores of UAL were a lower percentage of median weight (P < 0.001), tube feeding (P < 0.001) and increasing age (P < 0.001).. A large proportion of Malaysian children with CP have poor nutritional status and linear growth. Nutritional assessment and management at an early age might help this group of children achieve adequate growth.

Topics: Anthropometry; Case-Control Studies; Cerebral Palsy; Child; Child Development; Child, Preschool; Cross-Sectional Studies; Diet; Female; Humans; Malaysia; Male; Nutritional Status; Regression Analysis

A hospital study was carried out to compare parenting stress among 87 Malaysian mothers of children with cerebral palsy and a control group (comprising 87 mothers of children without disability who attended the walk-in paediatric clinic), using the Parenting Stress Index (PSI) questionnaire. Multiple regression analysis was used to determine socio-demographic and medical factors associated with child-domain stress (CDS) and parent-domain stress (PDS). Mothers of children with cerebral palsy scored significantly higher than control subjects on all sub-scales of CDS and PDS (p < 0.01), except for the sub-scale of 'role restriction'. The presence of cerebral palsy (p < 0.001) and activities of daily living (ADL) scores (p < 0.001) were significantly associated with CDS. Factors predictive of PDS were ADL scores (p < 0.001), number of hospitalizations over the past year (p = 0.024), level of maternal education (p = 0.018) and Chinese mothers (p < 0.001). Although this study demonstrated that Malaysian mothers of children with cerebral palsy experienced higher levels of stress than controls, the impact of cerebral palsy per se on parenting stress was modified by other factors such as increased care-giving demands, low maternal education and ethnic background. Habilitation should be directed at easing the burden of daily care, minimizing hospital re-admissions and targeting appropriate psychosocial support at specific subgroups to change parental perception and expectations.

Topics: Adult; Cerebral Palsy; Child, Preschool; China; Female; Humans; India; Malaysia; Male; Mothers; Parent-Child Relations; Parenting; Risk Assessment; Risk Factors; Socioeconomic Factors; Stress, Psychological; Surveys and Questionnaires

Topics: Adolescent; Adult; Age Factors; Ankle; Cerebral Palsy; Child; Ethnicity; Female; Hip; Humans; Knee; Leprosy; Malaysia; Male; Middle Aged; Paraplegia; Poliomyelitis; Radiography; Sex Factors; Spinal Cord; Spinal Cord Neoplasms; Spinal Dysraphism; Spinal Fusion; Tendon Transfer; Tuberculosis, Spinal