Effects of empowerment program on the burden of care in mothers of children with phenylketonuria

Objectives: Phenylketonuria (PKU) is a genetic disease of children that need a lifelong diet for its treatment. Because of the high burden of care, Parents and particularly mothers are prone to mental disorders or psychiatric adverse reactions. This study aimed to investigate the effect of empowerment of mothers on the burden of caring children with phenylketonuria.Materials & Methods: This was a semi-experimental (before-after with control group) study. In this research, 50 mothers of children with phenylketonuria that were referred to endocrine clinic in Qods hospital of Qazvin city, were selected and randomly divided into intervention and control groups. Data collection was made by using demographic characteristics of mothers and children and also the Zarit burden interview questionnaires. Empowerment program was delivered during nine sessions of holistic and family oriented empowerment model in the intervention group.  The control group received routine services. Data were analyzed using descriptive and inferential statistics through SPSS software version 18.Results: In intervention group, the mean score of overall care burden and its dimensions in the mothers of children with phenylketonuria in post-test was significantly lower than the pre-test  (41.20 ± 5.04 vs. 58.24 ± 3.96; p<0. 001); but  pre-test and post-test scores in the control group had no significant difference (58.4 ± 5.22 vs. 58.96 ± 4; p=0.327). In other words empowerment program was able to reduce the burden of caring in mothers.Conclusion: Empowerment program can reduce the burden of care in mothers of children with phenylketonuria. Thus it seems that empowerment training is necessary to this group of mothers in the form of workshops and educational pamphlets

A Psychometric Study of the Bayley Scales of Infant and Toddler Development in Persian Language Children

How to Cite This Article: Azari. N, Soleimani F, Vameghi R, Sajedi F, Shahshahani S, Karimi H, Kraskian A, Shahrokhi A, Teymouri R, Gharib M. A Psychometric Study of the Bayley Scales of Infant and Toddler Development in Persian Language Children. Iran J Child Neurol. Winter 2017; 11(1):50-56.AbstractObjectiveBayley Scales of infant & toddler development is a well-known diagnostic developmental assessment tool for children aged 1–42 months. Our aim was investigating the validity & reliability of this scale in Persian speaking children.Materials & MethodsThe method was descriptive-analytic. Translation- back translation and cultural adaptation was done. Content & face validity of translated scale was determined by experts’ opinions. Overall, 403 children aged 1 to 42 months were recruited from health centers of Tehran, Iran during years of 2013- 2014 for developmental assessment in cognitive, communicative (receptive & expressive) and motor (fine & gross) domains. Reliability of scale was calculated through three methods; internal consistency using Cronbach’s alpha coefficient, test-retest and interrater methods. Construct validity was calculated using factor analysis and comparison of the mean scores methods.ResultsCultural and linguistic changes were made in items of all domains especially on communication subscale. Content and face validity of the test were approved by experts’ opinions. Cronbach’s alpha coefficient was above 0.74 in all domains.Pearson correlation coefficient in various domains, were ≥ 0.982 in test retest method, and ≥0.993 in inter-rater method. Construct validity of the test was approved by factor analysis. Moreover, the mean scores for the different age groups were compared and statistically significant differences were observed between mean scores of different age groups, that confirms validity of the test.ConclusionThe Bayley Scales of Infant and Toddler Development is a valid and reliable tool for child developmental assessment in Persian language children.References1. Boyle CA, Boulet S, Schieve LA, Cohen RA, Blumberg SJ, Yeargin-Allsopp M, et al. Trends in the prevalence of developmental disabilities in US children, 1997–2008. Pediatrics 2011:peds. 2010-989.2. Sajedi F, Doulabi MA, Vameghi R, Baghban AA, Mazaheri MA, Mahmodi Z, et al. Development of Children in Iran: A Systematic Review and Meta-Analysis. Glob J Health Sci 2015 Dec 18;8(8):51251.3. Soleimani F, Vameghi R, Biglarian A, Rahgozar M. Prevalence of motor developmental disorders in children in Alborz Province, Iran in 2010. Iran Red Crescent Med J 2014 Dec 25;16(12):e16711.4. Soleimani F, Vameghi R, Biglarian A. Antenatal and Intrapartum Risk Factors for Cerebral Palsy in Term and Near-term Newborns. Arch Iran Med 2013;16(4): 213 – 216.5. Soleimani F, Vameghi R, Biglarian A, Daneshmandan N : Risk factors Associated with Cerebral Palsy in Children Born in Eastern and Northern Districts of Tehran. Iran Red Crescent Med J 2010; 12 (4):428-432.6. Fischer VJ, Morris J, Martines J. Developmental Screening Tools: Feasibility of Use at Primary Healthcare Level in Low-and Middle-income Settings. J Health Popul Nutr 2014 Jun;32(2):314-26.7. Blauw-Hospers CH, Hadders-Algra M. A systematic review of the effects of early intervention on motor development. Dev Med Child Neurol 2005 Jun;47(6):421-32. 8. Nordhov SM, Ronning JA, Dahl LB, Ulvund SE, Tunby J, Kaaresen PI. Early intervention improves cognitive outcomes for preterm infants: randomized controlled trial. Pediatrics 2010 Nov;126(5):e1088-94.9. Bailey DB, Jr., Hebbeler K, Scarborough A, Spiker D, Mallik S. First experiences with early intervention: a national perspective. Pediatrics 2004 Apr;113(4):887-96.10. Raju TN, Higgins RD, Stark AR, Leveno KJ. Optimizing care and outcome for late-preterm (near-term) infants: a summary of the workshop sponsored by the National Institute of Child Health and Human Development. Pediatrics 2006;118(3):1207-14.11. First LR, Palfrey JS. The infant or young child with developmental delay. N Engl J Med 1994 Feb 17;330(7):478-83.12. Dobrez D, Sasso AL, Holl J, Shalowitz M, Leon S, Budetti P. Estimating the cost of developmental and behavioral screening of preschool children in general pediatric practice. Pediatric 2001;108(4):913-22.13. Torras-Mana M, Guillamon-Valenzuela M, Ramirez-Mallafre A, Brun-Gasca C, Fornieles-Deu A. Usefulness of the Bayley scales of infant and toddler development, third edition, in the early diagnosis of language disorder. Psicothema 2014;26(3):349-56.14. Gladstone M, Lancaster GA, Jones A, Maleta K, Mtitimila E, Ashorn P, et al. Can Western developmental screening tools be modified for use in a rural Malawian setting? Arch Dis Child. 2008 Jan;93(1):23-9.15. Lipkin PH, Cartwright JD, Desch LW, Duby JC, Elias ER, Johnson CP, et al. Role of the medical home in family-centered early intervention services. Pediatrics 2007;120(5):1153-8.16. Johnson S, Marlow N. Developmental screen or developmental testing? Early Hum Dev 2006 Mar;82(3):173-83.17. Vameghi R, Sajedi F, Kraskian Mojembari A, Habiollahi A, Lornezhad HR, Delavar B. Cross-Cultural Adaptation, Validation and Standardization of Ages and Stages Questionnaire (ASQ) in Iranian Children. Iran J Public Health 2013 May 1;42(5):522-8.18. Shahshahani S, Vameghi R, Azari N, Sajedi F, Kazemnejad A. Validity and Reliability Determination of Denver Developmental Screening Test-II in 0-6 Year-Olds in Tehran. Iran J Pediatr 2010 Sep;20(3):313-22.19. Abubakar A, Holding P, Van Baar A, Newton C, van de Vijver FJ. Monitoring psychomotor development in a resourcelimited setting: an evaluation of the Kilifi Developmental Inventory. Ann Trop Paediatr 2008 Sep;28(3):217-26.20. Harris SR, Megens AM, Backman CL, Hayes VE. Stability of the Bayley II Scales of Infant Development in a sample of low-risk and high-risk infants. Dev Med Child Neurol 2005 Dec;47(12):820-3.21. Albers CA, Grieve AJ. Review of Bayley Scales of Infant and Toddler Development. J Psychoeduc Assess 2007 Jun;25(2):180-190. DOI: 10.1177/0734282906297199. 22. Godamunne P, Liyanage C, Wimaladharmasooriya N, Pathmeswaran A, Wickremasinghe AR, Patterson C, et al. Comparison of performance of Sri Lankan and US children on cognitive and motor scales of the Bayley scales of infant development. BMC Res Notes 2014 May 16;7:300.23. Deroma L, Bin M, Tognin V, Rosolen V, Valent F, Barbone F, et al. [Interrater reliability of the Bayley III test in the Italian Northern-Adriatic Cohort II]. Epidemiol Prev 2013 Jul-Oct;37(4-5):297-302.24. Zakaria S, Seok CB, Sombuling A, Ahmad MS, Hashmi SI. Reliability and Validity for Malay Version of Bayley Scales of Infant and Toddler Development-(Bayley- III): Preliminary Study. International Proceedings of Economics Development & Research 2012;40. 25. Yu YT, Hsieh WS, Hsu CH, Chen LC, Lee WT, Chiu NC, et al. A psychometric study of the Bayley Scales of Infant and Toddler Development - 3rd Edition for term and preterm Taiwanese infants. Res Dev Disabil 2013 Nov;34(11):3875-83.26. Acton BV, Biggs WS, Creighton DE, Penner KA, Switzer HN, Thomas JHP, et al. Overestimating neurodevelopment using the Bayley-III after early complex cardiac surgery. Pediatrics 2011 Oct;128(4):e794-800.27. Anderson PJ, De Luca CR, Hutchinson E, Roberts G, Doyle LW. Underestimation of developmental delay by the new Bayley-III Scale. Arch Pediatr Adolesc Med 2010 Apr;164(4):352-6.28. Campbell SK, Zawacki L, Rankin KM, Yoder JC, Shapiro N, Li Z, et al. Concurrent validity of the TIMP and the Bayley III scales at 6 weeks corrected age. Pediatr Phys Ther 2013 Winter;25(4):395-401.29. Visser L, Ruiter SAJ, Van der Meulen BF, Ruijssenaars WAJJM, Timmerman ME. Validity and suitability of the Bayley-III Low Motor/Vision version: A comparative study among young children with and without motor and/or visual impairments. Res Dev Disabil 2013 Nov;34(11):3736-45.30. Soleimani F, Azari N, Vameghi R, Sajedi F, Shahshahani S, Karimi H, Kraskian A, Shahrokhi A, Teymouri R, Gharib M. Is the Bayley Scales of Infant and Toddler Developmental Screening Test, valid and reliable for Persian speaking children? Iran J Pediatr 2016 October; 26(5):83-90

A Comparison Study of the Tehran Norms to the Reference Norms on Children Performance of the Bayley III

Objectives The Bayley Scales of Infant and Toddler Development (Bayley III) assess cognitive, language, and motor development of children aged 1–42 months, and have been widely used globally. It is unclear whether or not the reference norms of the Bayley III are acceptable for use in other populations or lead to over or under-estimating development. The purpose of this study was to estimate the distribution of the Bayley scores by age in Persian speaking children and to compare the norms between Persian and reference norms. Materials & Methods We constructed Bayley III norms for cognitive, language, and motor scales using 1,674 typically developing children by consecutive sampling from health care centers. First cut-off point was determined, and then the scaled scores, based on Persian speaking and reference norms, were compared. The proportions of children with low scores (scoring less than -1SD and -2 SD) based on the two norms were compared, to identify over or under-referral for developmental delay resulting from reference norms. Results Scaled scores based on Persian norms varied across values based on reference norms on all subtests. The mean differences were significant across all five sub-tests (p < .05), with large effect sizes for receptive and expressive communication, fine and gross motor sub-tests of .20, .23, .14, and .25 respectively, and with small effect size for cognition sub-test of .02. Large effect sizes for all age groups were found for cognition, expressive communication, and fine motor sub-tests. For the receptive communication sub-test, effect sizes were generally large, with the exception of four age groups. For the gross motor sub-test, effect sizes were generally large, with the exception of six age groups. More children scored below 1 and 2 SD using the Persian norms and resulted in under-referral regarding cognitive, receptive and expressive communication, fine and gross motor skills. Conclusion The Persian norms differ from the reference norms for all sub-tests and these differences are clinically significant. The use of the reference norms leads to fewer referrals in all sub-scales and leads to fewer diagnoses of children with developmental delay. Population specific norms are required to identify children with low scores for referral and intervention

A 16-channel 1.1mm^2 implantable seizure control SoC with sub-μW/channel consumption and closed-loop stimulation in 0.18µm CMOS

We present a 16-channel seizure detection system-on-chip (SoC) with 0.92µW/channel power dissipation in a total area of 1.1mm^2 including a closed-loop neural stimulator. A set of four features are extracted from the spatially filtered neural data to achieve a high detection accuracy at minimal hardware cost. The performance is demonstrated by early detection and termination of kainic acid-induced seizures in freely moving rats and by offline evaluation on human intracranial EEG (iEEG) data. Our design improves upon previous works by over 40× reduction in power-area product per channel. This improvement is a key step towards integration of larger arrays with higher spatiotemporal resolution to further boost the detection accuracy

The Effect of the combination of active vestibular intervention and occupational therapy on Balance in Children with Bilateral Spastic Cerebral Palsy: A pilot randomized Controlled trial

Objective This study aimed to examine the effect of the combination of active vestibular interventions and occupational therapy on balance, and the relationship between balance changes and Activity of Daily Living in school-aged children with cerebral palsy (CP). Materials & Methods Twenty-four children with Spastic CP, at level I and II according to the “Gross Motor Function Classification System aged 7-12 years were enrolled and randomly assigned into control and intervention groups. Pediatric Balance Scales, Bruininks-Oseretsky Test of Motor Proficiency II were employed to assess the functional balance changes, as well as Force Plate (during eyes closed and open) to assess the parameters of balance changes (e.g., center of pressure excursion), Activity of Daily Living was assessed by “Activity Scales for Kids (performance version)”. Participants in the intervention group received active vestibular intervention for 20 min and regular occupational therapy program for 25 min, and the control group received regular occupational therapy program for 45 min. Interventions were provided 3 d/week for 6 weeks in each group. The participants were assessed in three stages: baseline, immediately after and eight weeks after intervention. Data were analyzed by ANOVA and linear regression. Results The results demonstrated that only functional balance according to Pediatric Balance Scales scores was significantly increased in the active vestibular interventions group (p=0.02). There was no significant relationship between functional balance and Activity of Daily Living (P>0.05). Conclusion The combined administration of active vestibular interventions and occupational therapy could improve the functional balance in children with spastic CP. It may be related to the reorganization of the vestibular system with a controlled and precise application of stimuli

Determination of validity and reliability of the Bayley scales in infant and toddler development

Introduction: For diagnosing children who are suspected to have developmental delay through developmental screening tests, we need a valid and reliable diagnostic tool. The Bayley scales is a well-known diagnostic developmental assessment on cognitive, communication and motor domains. The aim of this study was validity and reliability determination of the Bayley test. Materials and Methods: The method of this study was descriptive-analytic. The test was provided through translation- back translation and cultural adaptation. Content and face validity of tool was determined by experts&rsquo; opinions. 260 children aged 1 to 42 months were recruited for developmental assessment by Bayley. Reliability of test was calculated through three methods; internal consistency, test-retest and inter-rater. Construct validity was calculated using factor analysis and comparison of the mean scores methods. Results: Participants were 260 children 15 days to 42 months, including 134 boys (51.5%). Cranach&rsquo;s alpha coefficients were more than 0.76 for all domains. Pearson correlation coefficient in different domains, were at least 0.987 (P< 0.001) in test retest method; and 0.991 (P<0.001) in inter-rater method. The face and content validity of test was approved by experts in child development. Construct validity of test was approved through factor analysis and statistically significant differences were observed between mean scores of different age groups, that confirms the validity of test. Conclusion: These results indicated that the Bayley is a valid and reliable tool for developmental assessment in Persian children

Is the Bayley screening test norms appropriate for Persian language children?

Objective: To evaluate the distribution of the Bayley screening test scores by age, in Persian children and compare developmental risk categories distributions between Persian and reference norms.Materials &amp; Methods: A representative sample of 417, 1 to 42-months-old, typically developing children by consecutive sampling from health -care centers recruited, during the 2014 to 2015 in Tehran city.  The Bayley measures children’s cognitive, receptive and expressive communication, fine and gross motor skills. For determining cut points for the subtest scores, two cuts points were determined for each age group, dividing scores into the three bands that identify the at risk, emerging (between the 2nd and 25th percentiles), and competent categories. We estimated the agreement between the distributions of the risk categories between the two samples using weighted kappa statistics.Results: The comparison of neurodevelopmental classification of children based on two norms determined that; approximately 70-80% of all tests administered to the participating children were classified as normal by both norms. Weighted kappa coefficients for the five subtests ranged from 0.56 to 0.89 suggesting moderate agreement between the classification using the reference and Persian norms. Expressive and receptive communication subtests had the lowest kappa scores (0.56 and 0.59, respectively), and classification of gross motor demonstrated the highest level of agreement (0.89). Conclusion: Our findings demonstrate that reliance on reference -based norms for the Bayley test in Persian children results in misclassification of developmental delay