Caring for children with disabilities brings about a significant impact on the parents and families. The purposes of this study were to determine the impact of having children with disabilities on parents' health-related quality of life (HRQOL), family functioning, and total family impact and to identify the associated factors. A total of 425 parents/caregivers of children with disabilities who were registered to community-based rehabilitation centers in 5 districts in Kelantan, Malaysia, participated in this study. The Malay version of PedsQL Family Impact Module was used as research instrument. General linear regression was applied to analyze the association between family impact scores (Total Impact, Parent HRQOL Summary, and Family Functioning Summary) and study factors using Stata/SE 11 software. The mean (SD) Total Impact Score and Parent HRQOL Summary Score of the parents/caregivers was 75.1 (16.85) and 75.0 (18.74) respectively, and the median (IQR) of Family Functioning Summary Score was 84.4 (28.13). Mothers, non-Malays, and widowed parents/caregivers, parents/caregivers having male children with disabilities, and children with more complex disability had significantly lower parent HRQOL and family functioning. Both parents/caregivers' characteristics and children's characteristics contributed to family impact in local setting. Results of this study emphasize the importance of the whole family involvement as the focus of services and supports by health care providers.
28 April 2006 in Japanese Journal of Infectious Diseases
Pantoea infections are uncommon in humans. Most reports have involved adults or children after thorn injuries. There are only a few reports of systemic infections with Pantoea. This is the first report of the clinical picture of systemic Pantoea spp. infection in neonates as observed during an outbreak in a neonatal intensive care unit caused by infected parenteral nutrition solutions. Even though detected early, the infections had a fulminant course, causing septicemic shock and respiratory failure. Pulmonary disease was prominent and presented mainly as pulmonary hemorrhage and adult respiratory distress syndrome. The organism was sensitive to most antibiotics used in neonatal intensive care units, but the clinical response to antibiotic therapy was poor. The fatality rate was very high: 7 out of 8 infected infants succumbed to the infection (87.5%).
28 July 2006 in Archives of Disease in Childhood - Fetal and Neonatal Edition
Objective: To determine whether the addition of low-cost reflecting curtains to a standard phototherapy unit could increase effectiveness of phototherapy for neonatal jaundice. Design: Randomised controlled clinical trial. Setting: Level-one nursery of the Hospital Universiti Sains Malaysia, Kelantan, Malayasia. Patients: Term newborns with uncomplicated neonatal jaundice presenting in the first week of life. Interventions: Phototherapy with white curtains hanging from the sides of the phototherapy unit (study group, n = 50) was compared with single phototherapy without curtains (control group, n = 47). Main outcome measures: The primary outcome was the mean difference in total serum bilirubin measured at baseline and after 4 h of phototherapy. The secondary outcome was the duration of phototherapy. Results: The mean (standard deviation) decrease in total serum bilirubin levels after 4 h of phototherapy was significantly (p<0.001) higher in the study group (27.62 (25.24) μmol/l) than in the control group (4.04 (24.27) μmol/l). Cox proportional hazards regression analysis indicated that the median duration of phototherapy was significantly shorter in the study group (12 h) than in the control group (34 h; χ2 change 45.2; p<0.001; hazards ratio 0.20; 95% confidence interval 0.12 to 0.32). No difference in adverse events was noted in terms of hyperthermia or hypothermia, weight loss, rash, loose stools or feeding intolerance. Conclusion: Hanging white curtains around phototherapy units significantly increases efficacy of phototherapy in the treatment of neonatal jaundice without evidence of increased adverse effects.
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.
1 January 2010 in International Journal of Infectious Diseases