First stage international validation of the pediatric family needs questionnaire (FNQ-P).

OBJECTIVES: 1. Evaluate reliability and construct validity of the newly-developed Family Needs Questionnaire - Pediatric (FNQ-P), a 40-item measure assessing the extent to which family's needs are met after a child has an acquired brain injury (ABI). 2. Explore the impact of selected child characteristics on FNQ-P scores. RESEARCH DESIGN: MEASUREMENT STUDY: Methods: Parents/caregivers of children with ABI (2-18 years) were recruited across four sites (Canada, Sweden, Lithuania, Australia) for FNQ-P test-retest evaluation. These sites plus a fifth (United Kingdom) completed construct validity evaluation with the Family Burden of Injury Inventory and Strengths and Difficulties Questionnaire. Associations between FNQ-P score and age, injury severity, time post-injury and site were evaluated via stepwise regression. RESULTS: FNQ-P mean scores (n=61) were 64.1% (SD 22.3) and 58.8% (SD 22.6) on test and retest, respectively. Test-retest reliability was good overall (ICC=0.78, 95% CI 0.65-0.86). There was a weak association between FNQ-P and FBII (r=-0.23, P=0.049, n=71), but no association between FNQ-P and SDQ scores (maximum r=0.16, P>0.15). None of the variables studied predicted FNQ-P scores. CONCLUSION: The FNQ-P demonstrated good test-retest reliability. Further validity assessment is recommended. Lack of relationship between FNQ-P and variables studied suggests independence of family needs.

Patterns and predictors of participation in children and adolescents with spina bifida.

Purpose: Participation is defined as involvement and engagement in all life situations and is seen as an essential condition for children's development. Here, we analyzed the patterns and predictors of participation for Lithuanian children and adolescents with spina bifida (SB).Material and methods: A cross-sectional design was employed. Parents of children aged 5-18 years with SB (n = 99) completed the Participation and Environment Measure for Children and Youth. Information about children's health conditions and functional issues was also collected. Descriptive statistics were used to analyze participation patterns, and multiple linear regression analyses were employed to identify the significant explanatory factors in each setting.Results: Participation restriction was mainly observed in preschool/school and the community settings. The environmental factors consistently explained at least one dimension of participation across all settings. Intellectual abilities had a substantial effect on participation in the home and preschool/school setting, whereas the contribution of bowel incontinence was observed in the preschool/school setting.Conclusions: Our findings highlight the role of intellectual functioning, bowel continence, and the environmental factors in explaining participation of children with SB across different settings and, therefore, demonstrate the need for more supports and environmental modifications (especially for those who have lower level of cognitive abilities), as well as interventions targeting improved bowel continence.Implications for rehabilitationChildren with spina bifida had low levels of participation in the community and preschool/school settings.The most important predictors for participation were intellectual abilities, bowel continence, and the environmental factors.Practitioners should pay more attention to environmental modifications (especially for children who have lower level of cognitive abilities) as primary targets of interventions aimed at promoting participation.Strategies to improve bowel continence could improve participation in the preschool/school setting.

Participation of Children with Spina Bifida: A Scoping Review Using the International Classification of Functioning, Disability and Health for Children and Youth (ICF-CY) as a Reference Framework.

Background and objectives. Participation is a fundamental right of the child, regardless of his health status. Assessing and supporting the participation of children with spina bifida (SB) presents a significant challenge for practitioners. The purpose of this study was to examine what is known about the participation of children with SB. Materials and Methods. The framework for scoping reviews from Arksey & O'Malley was used. A literature search in Cumulative Index to Nursing and Allied Health Literature (CINAHL), Medical Literature Analysis and Retrieval System Online (Medline), PsychINFO and the Education Resources Information Centre (ERIC) databases retrieved 136 papers, 10 of which met the criteria for inclusion and were selected for analysis. Synthesis of the results on participation within occupational domains of leisure, school and community, and factors influencing participation of children with SB was performed. Results. All the included studies were non-experimental and used cross-sectional, population-based or qualitative design. Most studies analysed social participation or participation in physical activities, except one that focused on school participation. Data from these studies have shown that children with SB experience greater participation restrictions compared to their typical peers or children with other chronic diseases. The participation was mainly affected by contextual factors. Relationships between pathology and participation were not sufficiently validated. Conclusions. There is little research on the participation of children with SB. Future studies must consider contextual factors and interventions facilitating or impeding participation.

Clinical and Environmental Predictors of Health-Related Quality of Life in Lithuanian Children and Adolescents with Spina Bifida: A Cross-Sectional Analysis of a Nationally Represented Sample.

Background and objectives: In pediatric chronic health conditions, health-related quality of life (HRQOL) is a useful indicator of health, development, and well-being. The purpose of the study was to assess the effect of clinical and environmental factors on the HRQOL of children and adolescents with spina bifida (SB). Materials and methods: A cross-sectional study of the sample of 99 children and adolescents with SB aged 5 to 17 years. The questionnaires used in the study were the Spina Bifida Health-Related Quality of Life instrument (HRQOL-SB), and the Participation and Environment Measure for Children and Youth. Medical data were obtained from the medical records and the clinical examination. Results: A multivariate linear regression revealed that the most potent predictors of the HRQOL in children with SB were the community overall environmental supports (ß = 0.504; p = 0.0001), a number of health conditions (ß = -0.395; p = 0.0001), access to personal transportation (ß = 0.236; p = 0.023), and supplies (ß = 0.181; p = 0.031), explaining 80.3% of the variance in the SB-HRQOL scores. The most significant predictors of the HRQOL in adolescents were a number of health conditions (ß = -0.387; p = 0.0001), cognitive demands of activities at home (ß = 0.345; p = 0.0001), supplies (ß = 0.267; p = 0.0001), money (ß = 0.303; p = 0.0001), physical layout at school (ß = 0.188; p = 0.008), and access to public transportation (ß = 0.206; p = 0.019), explaining 89.5% of the variance in the SB-HRQOL scores. Conclusions: Both clinical and environmental factors determined the HRQOL of children and adolescents with SB. Environmental supports and resources contributed to HRQOL more than medical problems, especially in adolescents. The number of associated medical problems, reflecting disease severity, was the more potent clinical predictor compared to an individual health problem.

Effects of the Inerventions method on gross motor function in children with spastic cerebral palsy.

AIM OF THE STUDY: To investigate the effect of the Inerventions method on gross motor function in children with spastic cerebral palsy (CP). CLINICAL RATIONALE FOR THE STUDY: The Inerventions method is the type of transcutaneous electrical nerve stimulation (TENS) delivered through a full-body garment (Mollii suit) that aims to prompt reciprocal inhibition via the antagonist to reduce spasticity in selected muscle groups. Although Mollii is approved by the European Union as a medical device, independent clinical tests have not yet been performed. MATERIALS AND METHODS: 16 children with spastic CP, aged 4.7 ±â€¯1.3 were recruited and then willingly assigned to the Inerventions method (n = 8) and control groups (n = 8). In the Inerventions method group, TENS was applied 1 h per session, 3 days weekly for 3 weeks. Children of the control group received functional exercises program for the same duration, frequency and length. Outcome measures included the Gross Motor Function Measure, passive range of motion (PROM), the Modified Tardieu Scale, and the Timed Up and Go test. RESULTS: While both groups experienced improvements in gross motor function and mobility, the difference in improvement between children treated with the TENS and physiotherapy did not reach statistical significance. No change occurred in PROM and spasticity in either group following the interventions. CONCLUSIONS: There is no superior efficacy of the Inerventions method compared to conventional physiotherapy.

Classification systems of communication for use in epidemiological surveillance of children with cerebral palsy.

AIM: Children with cerebral palsy (CP) often experience communication difficulties. We aimed to identify a classification system for communication of children with CP suitable for epidemiological surveillance. METHOD: Systems to classify the communication of children with CP were identified. The Communication Function Classification System (CFCS), Functional Communication Classification System (FCCS), and Viking Speech Scale (VSS) were chosen for further investigation and translated. They were administered to 155 children aged 4 to 13 years with CP (across all motor severity levels) from eight European countries. Children's parents/carers, speech therapists, and other health professionals applied the systems through direct observation. Other professionals applied them from case notes only. The systems were assessed for agreement, stability, ease, and feasibility of application. RESULTS: Test-retest stability was moderate-to-high for VSS (k=0.66-0.88), CFCS (k=uncomputed-0.91), and FCCS (k=0.52-0.91). Overall interrater agreement was fair to very good for every classification system. VSS achieved the best agreement between parents/carers and speech therapists. VSS was considered the easiest instrument to apply. INTERPRETATION: Because of its ease of use by a range of healthcare professionals, the VSS should be considered for CP registers which intend to survey speech intelligibility. For a wider assessment of communication, the CFCS or FCC should be considered.

Development of The Viking Speech Scale to classify the speech of children with cerebral palsy.

Surveillance registers monitor the prevalence of cerebral palsy and the severity of resulting impairments across time and place. The motor disorders of cerebral palsy can affect children's speech production and limit their intelligibility. We describe the development of a scale to classify children's speech performance for use in cerebral palsy surveillance registers, and its reliability across raters and across time. Speech and language therapists, other healthcare professionals and parents classified the speech of 139 children with cerebral palsy (85 boys, 54 girls; mean age 6.03 years, SD 1.09) from observation and previous knowledge of the children. Another group of health professionals rated children's speech from information in their medical notes. With the exception of parents, raters reclassified children's speech at least four weeks after their initial classification. Raters were asked to rate how easy the scale was to use and how well the scale described the child's speech production using Likert scales. Inter-rater reliability was moderate to substantial (k>.58 for all comparisons). Test-retest reliability was substantial to almost perfect for all groups (k>.68). Over 74% of raters found the scale easy or very easy to use; 66% of parents and over 70% of health care professionals judged the scale to describe children's speech well or very well. We conclude that the Viking Speech Scale is a reliable tool to describe the speech performance of children with cerebral palsy, which can be applied through direct observation of children or through case note review.

[The assessment of infant motor development disorders in primary health care institutions]. / Vaiku motorines raidos sutrikimu vertinimas pirmineje sveikatos prieziuros grandyje.

OBJECTIVE: The delay or disorders of infant motor development require early screening and treatment. The objective of this study was to investigate the possibilities to assess infant motor development disorders in primary health care institutions of central part of Lithuania. MATERIALS AND METHODS: The original questionnaires were sent to primary health care institutions of Kaunas district. One-hundred-forty-eight questionnaires with answers of General Practitioners and Pediatricians returned to investigators. RESULTS: Analysing the data we found that one physician in average takes care of 28.8 +/- 18.4 infants, among these infants 3.55 +/- 4.2 have disorders of motor development. Most of the doctors (92.6%) evaluate the infant motor development, but use only the method of routine clinical assessment. Very few physicians (4.8%) use very precise methods of assessment (Munich diagnostic scheme or Bobath method). Among all doctors 66.9% expressed the will to asses infant motor development by themselves in primary health care clinic. CONCLUSIONS: We conclude, that General Practitioners and Pediatricians feel the lack of competence and assistant aids for the assessment of motor development disorders in infants.