The use and usefulness of a parent questionnaire to help schools identify disability

The Equality Act 2010 will be implemented in full in 2011, and schools in the UK will have to provide special aids or services for children with disabilities where this provision is considered reasonable. This paper reports on staff perspectives on the use and usefulness of a parental questionnaire on disability from a sample of 49 schools (mainstream and special) located in 12 local authorities. Most schools found the process of administering the parent questionnaire undemanding; just under half of the sample indicated that they would take some action as a result of the data collected from the parental questionnaire (e.g., to inform plans for targeting or monitoring support for children, and to contact parents and follow-up issues they had mentioned); and about one-third of schools recorded unanticipated findings from the parental questionnaire, that is, the identification of children whose disabilities were not previously known to the school. Implications for schools are discussed.

MEETING THE NEEDS OF HANDICAPPED CHILDREN: A STUDY OF EDUCATIONAL AND HEALTH CARE SERVICES PROVIDED TO PRE-KINDERGARTEN CHILDREN IN THE HOUSTON INDEPENDENT SCHOOL DISTRICT EARLY CHILDHOOD PROGRAM FOR THE HANDICAPPED (PARENT SATISFACTION, FUNCTIONAL STATUS, PSYCHOSOCIAL DEVELOPMENT)

The Education for All Handicapped Children Act of 1975, P.L. 94-142, created a new challenge for the nation's public school systems. During 1982-1983, a national study, called the "Collaborative Study of Children with Special Needs", was conducted in 5 metropolitan school districts to evaluate the effectiveness of education and health care services of children in kindergarten to 6th grade being provided under P.L. 94-142 programs. This dissertation (the Substudy) was undertaken to augment the findings of the Collaborative Study. The purpose of this study was to develop a database to provide descriptive information on the demographic, service and health characteristics of a small group of 3 and 4 year old handicapped children served by the Houston Independent School District (HISD) during 1982-1983.^ The study involved a stratified sample of 105 three and four year old children divided into 3 groups according to type of handicapping condition.^ The results of the study gave a clearer picture of the demographic characteristics of these Pre-K children. Specifically, sex ratio was approximately one, lower than the national norm. Family and socioeconomic characteristics were assessed.^ The study used an independence/dependence index composed of 11 items on the parent questionnaire to assess the level of functional independence of each child. An association was found between index scores and parent-reported effects of the child on family activity. Parents who said that their child's condition had affected the family's job situation, housing accomodations, vacation plans, marriage, choice of friends and social activities were also more likely to report less independence in the child. In addition, many of the Substudy children had extensive care-taking needs reflected in specific components of the index such as dressing, feeding, toileting or moving about the house.^ In general the results of the Pre-K Substudy indicate that at the early childhood level, the HISD special education program is functioning well in most areas and that parents are very satisfied with the program. (Abstract shortened with permission of author.)^

Measuring parent satisfaction with a neonatal hearing screening program

The primary aim of the present study was to investigate parent satisfaction with a neonatal hearing screening program through use of a valid and reliable questionnaire developed for this purpose (Parent Satisfaction Questionnaire with Neonatal Hearing Screening Program; PSQ-NHSP). Eighty parents whose children had received hearing screening participated in this study. High levels of satisfaction were reported with more than 90% of parents satisfied with all aspects of the program. The PSQ-NHSP was analyzed for validity and reliability and demonstrated excellent internal consistency reliability (sigma = 0.94) and excellent test-retest reliability (rho = 0.97). Content validity of the PSQ-NHSP was partially established by reviewing available literature on parent satisfaction studies in other pediatric health-care service programs. Construct validity of the PSQ-NHSP was indicated by a significant positive relationship between overall satisfaction and the three specific dimensions in the questionnaire. The satisfaction questionnaire was found to be a useful instrument for identifying service shortfalls, and routine use of the PSQ-NHSP in other neonatal hearing screening programs is recommended.

Marqueurs précoces des problèmes sensoriels chez le jeune enfant présentant des problèmes d'alimentation

Description. Les troubles d’alimentation touchent de 33 à 80 % des enfants ayant un trouble du développement. L’évaluation clinique constitue une étape essentielle dans l’identification de la problématique. Alors qu’il existe des outils valides permettant d’évaluer la sphère oro-motrice, l’évaluation des problèmes d’origine sensorielle reste très limitée entraînant une négligence importante de cette dimension dans la prise en charge des problèmes d’alimentation. But. La présente étude avait pour but de développer une version préliminaire d’un instrument de mesure permettant l’identification précoce des problèmes d’alimentation d’ordre sensoriel chez la population pédiatrique. Méthodologie. Les premières étapes énoncées par Kielhofner et collègues permettant l’élaboration d’un nouvel outil d’évaluation ont été suivies. Résultats. Une version préliminaire de cet outil est proposée comprenant un questionnaire et un test. Le Questionnaire de la sphère sensorielle de l’alimentation (QSSA), constitué de 58 items, permet de documenter les capacités de l’enfant à traiter l’information sensorielle en lien avec l’alimentation et le Test de la sphère sensorielle de l’alimentation (TSSA) permet d’évaluer directement la tolérance de l’enfant à l’exploration buccale de matériel non comestible et comestible. Conséquences. La conception du questionnaire et du test de la sphère sensorielle de l’alimentation constituent les premières étapes du développement d’un outil d’évaluation visant spécifiquement la sphère sensorielle et les habitudes alimentaires chez le jeune enfant (6-36 mois).

Reliability, validity and acceptability of modified response formats of APD instruments for children using AAC

A pilot study consisting of a parent questionnaire, four APD tests and an acceptability questionnaire were presented to normal hearing and cognitively developing children between the ages of 8-12 years. Responses to a standard and modified response format of the APD tests were obtained over two test sessions. Results indicated that the modified response formats of the four APD tests were acceptable, fairly reliable and three out of the four APD tests were valid.

A parent-completed developmental questionnaire: Follow up of ex-premature infants

Objective: premature infants are at increased risk of developmental disability. Early identification of problems allows intervention to ameliorate or attenuate problems. A reliable screening tool allows triage of children in this high-risk population by identifying those unlikely to need full developmental assessment. To explore the test characteristics of an established parent-completed developmental assessment questionnaire 'Ages and Stages Questionnaire' (ASQ) in follow up of an Australian population of premature infants. Methodology: One hundred and sixty-seven children born prematurely with corrected ages 12- to 48-months attending the Growth and Development Clinic at the Mater Children's Hospital in Brisbane, Queensland, Australia; 136 questionnaires 'ASQ' were returned completed (81%) and were compared to formal psychometric assessment (Griffith Mental Development Scales for 12- and 24-months, Bayley Mental Development Intelligence Scale for 18-months, McCarthy General Cognitive Intelligence Scale for 18-months). Developmental delay was considered to be present if any of the above psychometric assessments fell below 1.0 standard deviations (SD). The ASQ cut-off used was 2.0 SD (US data derived means and SD). Results: Aggregate results for all age groups comparing ASQ to psychometric assessments as 'gold standards' found the ASQ to have the following test characteristics: sensitivity (90%); specificity (77%); positive predictive value (40%); negative predictive value (98%): % over-referred (20%); % under-referred (1%); % agreement (79%). likelihood ratio for children failing the ASQ was 3.8 and for passing the ASQ was 0.13. Twenty-one children with known disabilities were included in the study and in 14 of these, the ASQ overall score agreed with the psychometric assessment (67%). Conclusion: The high negative predictive value of the ASQ supports its use as a screening tool for cognitive and motor delays in the follow up of ex-premature infants. This would need to be combined with other strategies as part of a comprehensive follow up program for ex-premature infants.

Measurement of parent satisfaction in french-speaking PICUs: a need for translation and cultural adaptation of the empathic questionnaire

Background and aims: Family-centred care is an expected standard in PICU and parent reported outcomes are rarely measured. The Dutch validated EMPATHIC questionnaire provides accurate measures of parental perceptions of family-centred care in PICU. A French version would provide an important resource for quality control and benchmarking with other PICUs. The study aimed to translate and to assess the French cultural adaptation of the EMPATHIC questionnaire. Methods: In September 2012, following approval from the developer, translation and cultural adaptation were performed using a structured method (Wild et al. 2005). This included forward-backward translation and reconciliation by an official translator, harmonization assessed by the research team, and cognitive debriefing with the target users' population. In this last step, a convenience sample of parents with PICU experience assessed the comprehensibility and cultural relevance of the 65-item French EMPATHIC questionnaire. The PICUs in Lausanne, Switzerland and Lille, France participated. Results: Seventeen parents, including 13 French native and 4 French as second language speakers, tested the cognitive equivalence and cultural relevance of the French EMPATHIC questionnaire. The mean agreement for comprehensibility of all 65 items reached 90.2%. Three items fell below the cut-off 80% agreement and were revised for inclusion in the final French version. Conclusions: The translation and the cultural adaptation permitted to highlight a few cultural differences that did not interfere with the main construct of the EMPATHIC questionnaire. Reliability and validity testing with a new sample of parents is needed to strengthen the psychometric properties of the French EMPATHIC questionnaire.

Phase 2 Parent/Carer Questionnaire: Review of Allied Health Professions��' (AHP) support for children/young people with a statement of special educational needs

We want to know what you think about the AHP services for your child. We will also seek views of AHPs and teachers who work with your children and we will use them all to inform our decisions. This phase of the review is focusing on current AHP services for children/young people with a statement of special educational needs enrolled in mainstream schools and learning support centres/units attached to a mainstream school.

Validation française d'un questionnaire de stress post-traumatique destiné aux parents d'enfants présentant un risque périnatal élevé = French validation of the "Perinatal PTSD Questionnaire" assessing parent's posttraumatic stress reactions following the birth of a high risk infant.

(from the journal abstract) Objectives: The birth of a high risk infant--such as a very or extremely premature infant--can represent an important traumatic experience for parents. R. DeMier, M. Hynan et al's "Perinatal PTSD Questionnaire" aims at exploring, retrospectively, parent's posttraumatic stress reactions following the birth of a high risk infant. This paper describes the French validation of this questionnaire. Methods: Fifty-two families with a very or extremely premature infant and 25 families with a full term infant responded to the "Perinatal PTSD Questionnaire" and the "Impact of Event Scale" when children were 18 months old. Results: Parents of high risk infants can present posttraumatic stress reactions such as intrusion, avoidance or arousal symptoms. The French version of the "Perinatal PTSD Questionnaire" has satisfactory psychometric properties. Conclusions: As posttraumatic reactions are not directly related to objective descriptions of the stressful event, it may be essential to the liaison child psychiatrist to consider individual posttraumatic reactions in order to optimise preventive intervention with the parents. A questionnaire should not replace a clinical interview, however it may represent a useful screening tool. Also, this questionnaire should be useful for research purposes. (PsycINFO Database Record (c) 2005 APA, all rights reserved)

A parent-completed respiratory questionnaire for 1-year-old children: repeatability

BACKGROUND AND AIMS: There are few standardised questionnaires for the assessment of respiratory symptoms in preschool children. We have developed and tested the short-term repeatability of a postal questionnaire on respiratory symptoms for 1-year-old children. METHODS: A newly developed postal questionnaire for the assessment of wheeze and other respiratory symptoms was sent to parents of a population-based random sample of 4300 children aged 12-24 months. After an interval of 3 months, a random sample of 800 respondents received the questionnaire a second time. The responses were compared using Cohen's kappa (kappa) to assess agreement corrected for chance. RESULTS: The first questionnaire was returned by 3194 (74%) families, the second one by 460/800 (58%). Repeatability was excellent (kappa 0.80-0.96) for questions on household characteristics, environmental exposures and family history, good (kappa 0.61-0.80) for questions on prevalence, severity and treatment of wheeze, and moderate (kappa 0.39-0.66) for chronic cough and upper respiratory symptoms. CONCLUSIONS: This short postal questionnaire designed for use in population-based studies has excellent repeatability for family and household characteristics and good repeatability for questions on wheeze. Short-term changes in symptom status might be responsible for variable answers on recent chronic cough and upper respiratory symptoms. Overall, the questionnaire is a valuable instrument for community-based research on respiratory symptoms in 1 to 2-year-old children.

Validation and reliability of the Japanese version of the Food Allergy Quality of Life Questionnaire - Parent Form

Background: Food allergy (FA) is a heavy burden for patients and their families and can significantly reduce the quality of life (QoL) of both. To provide adequate support, qualitative and quantitative evaluation of the parents' QoL may be helpful. The objective of this study is to develop and validate a Japanese version of the Food Allergy QoL QuestionnaireeParent Form (FAQLQ-PF-J), an internationally validated disease-specific QoL measurement of the parental burden of having a child with FA. Methods: The FAQLQ-PF and the Food Allergy Independent Measure (FAIM), an instrument to test the construct validity of the FAQLQ-PF-J, were translated into Japanese. After language validation, the questionnaires were administered to parents of FA children aged 0e12 years and those of age-matched healthy (without FA) children. Internal consistency (by Cronbach's a) and test-retest reliability were evaluated. Construct validity and discriminant validity were also examined. Results: One hundred twenty-seven parents of children with FA and 48 parents of healthy children filled out the questionnaire. The FAQLQ-PF-J showed excellent internal consistency (Cronbach's a > 0.77) and test-retest reliability. Good construct validity was demonstrated by significant correlations between the FAQLQ-PF-J and FAIM-J scores. It discriminated parents of children with FA from those without. The scores were significantly higher (lower QoL) for parents of FA children with a history of anaphylaxis than those without, for those with >6 FA-related symptoms experienced than those with less FA-related symptoms. Conclusions: The FAQLQ-PF-J is a reliable and valid measure of the parental burden of FA in children.

Tradução com adaptação cultural para portugês e determinação da reprodutibilidade do questionnaire on respiratory symptoms in preschool children

RESUMO: Introdução: A asma brônquica é uma entidade frequente em idade pediátrica, apresentando uma grande heterogeneidade clínica e significativa morbilidade quando não controlada. A identificação de crianças sintomáticas pode atrasar ou até mesmo diminuir a ocorrência de algumas alterações estruturais. Reconhece-se a necessidade de questionários sobre sintomas respiratórios em língua portuguesa, devidamente validados, que tenham como população-alvo os grupos etários inferiores a 3 anos. Deste modo, será possível não só um conhecimento mais rigoroso da asma e da sibilância infantil mas também a uniformização de metodologias para o desenvolvimento de estratégias a nível nacional. Objetivos: Tradução com adaptação cultural para português e determinação da reprodutibilidade do Questionnaire on respiratory symptoms in preschool children de Strippoli e colaboradores. Material e métodos: A escolha do questionário obedeceu a vários critérios, entre os quais o grupo etário, o tipo e número de perguntas. O Questionnaire on respiratory symptoms in preschool children de Strippoli e colaboradores é um questionário de autopreenchimento, dirigido a crianças entre os 12 e os 24 meses de idade e destinado a estudos epidemiológicos ao nível da comunidade. Aborda aspetos referentes a sintomas respiratórios (sibilância, tosse crónica, sintomas das vias aéreas superiores), cuidados médicos, terapêutica, características ambientais, história familiar e situação social. Procedemos à sua tradução, com especial atenção para a adaptação do ponto de vista cultural e linguístico, utilizando o método da tradução / retroversão, amplamente utilizado e descrito na literatura internacional. Seguidamente determinámos a reprodutibilidade da versão final em língua portuguesa – Questionário de sintomas respiratórios em idade pré-escolar – utilizando o teste-reteste. Para tal, incluíram-se crianças entre os 12 e os 36 meses de idade recrutadas num Centro de Saúde e em creches de Lisboa. A distribuição dos questionários decorreu em duas fases: na primeira fase foram entregues pessoalmente nos locais de recrutamento e na segunda fase foram enviados por correio para os domicílios das crianças, respeitando-se um intervalo mínimo de 2 semanas entre ambos. Resultados: Na primeira fase foram distribuídos 180 questionários, com uma taxa de reposta de 41% (n=74). Na segunda fase enviaram-se para os respetivos domicílios 70 questionários,obtendo-se uma taxa de resposta de 66% (n=46). Para a análise de reprodutibilidade foram incluídos apenas os questionários preenchidos em ambos os momentos pelo mesmo indivíduo (mãe, pai ou representante legal) (n=41). A idade média das crianças foi, na primeira fase, de 22,5 meses e, na segunda fase, de 23,7 meses, com um predomínio do sexo feminino (F:M =1:0,6). A mediana do tempo decorrido entre os dois momentos de preenchimento dos questionários foi de 26 dias. Obtivemos valores de concordância globalmente bons a muito bons, à semelhança do sucedido no trabalho original. Conclusões: Procedemos à tradução e avaliação da reprodutibilidade do Questionnaire on respiratory symptoms in preschool children. Pretende-se que venha a ser uma ferramenta útil para estudos epidemiológicos e programas de rastreio na comunidade, contribuindo deste modo para uma otimização da abordagem da asma / sibilância infantil a nível nacional. -------------ABSTRACT: Background: Asthma is a very common feature in childhood, with important clinical heterogeneity and morbidity if not properly controlled. Identifying symptomatic children may delay or even reduce several structural changes. The development of questionnaires on respiratory symptoms in Portuguese for children under 3 years old will allow not only a more accurate knowledge of infantile asthma and recurrent wheezing but also the standardization of methodologies to develop nationwide strategies. Objectives: The aim of this study was to translate and adapt to the Portuguese culture and to determine the repeatability of the Questionnaire on respiratory symptoms in preschool children by Strippoli et al. Material and methods: The choice of the questionnaire took in consideration several criteria, among which the target age, the type and the number of questions. The Questionnaire on respiratory symptoms in preschool children by Strippoli et al is a parent-completed questionnaire for assessment of respiratory symptoms in 1 to 2-year-old children, developed for cross-sectional and longitudinal studies. It contains sections on respiratory symptoms (wheezing, chronic cough and upper airways symptoms), healthcare utilization, treatment, environmental exposure, family history and social situation. For the process of translation we used the method of translation and back-translation, with particular concern to cultural and linguistic adaptation. To assess the repeatability of the final Portuguese version - Questionário de sintomas respiratórios em idade pré-escolar - we used the test–retest analyses. The questionnaires were distributed to parents of children between 12 and 36 months old attending nurseries and a Primary Care Center of Lisbon. The distribution took place in two phases: the first questionnaires were delivered in person (phase one) and an identical questionnaire was posted to the families that participated in the first phase, 2 weeks after the first one was returned (phase two). Results: The response rates were 41% (180/74) in the first phase and 66% (70/46) in the second phase. For test–retest analyses, we included the 41 children with the same respondent (mother, father or legal representative) in both occasions. The median age of the children was 22,5 months at the first phase and 23,7 months at the second phase, with a predominance of girls (F:M = 1:0,6). The median time between the fillings of both questionnaires was 26 days. Globally, agreement values were good to excellent, similarly to the original work. Conclusion: In the present study we translated the Questionnaire on respiratory symptoms in preschool children and assessed its repeatability. Overall, we expect it to be a valuable tool for epidemiological studies and community-based screening programs, thus contributing to improve the management of infantile asthma / recurrent wheezing nationwide.

Food allergy: Validation of the French version of the FAQLQ-PF Quality of Life Questionnaire

Background: It has been previously shown with English speaking children that food allergy clearly affects their quality of life. The first allergy quality of life questionnaire has been validated in English in 2008, however to date no questionnaire was available in French. Objectives: To validate the French version of the Food Allergy Quality of Life Questionnaire- Parent Form (FAQLQ-PF) already existing version developed and validated in English by DunnGalvin et al. Methods: The questionnaire was translated from English to French by two independent French-speaking translators and retranslated by an independent English-speaking translator. We then recruited 30 patients between 0 and 12 years with a food allergy. Parents of these children answered the questionnaire during a clinic visit. The results obtained were then analysed and compared with the results provided by DunnGalvin's study and the Food Allergy independent Measure (FAIM). Results: 27 questionnaires were fully completed and available for analysis. Median age was 6 years with a range from 18 months to 12 years. We had a girl/boy ratio of 1:1.14. A Cronbach's a correlation index of 0.748 was found. Validity was demonstrated by significant correlations between FAQLQ-PF and the FAIM. Conclusion: The French version of the FAQLQ was validated and will permit to assess degree of Quality of Life for French-speaking children with food allergy. It will be an important tool for clinical research and will allow research collaboration between French and English speaking research teams.

The difference of disease perception by juvenile idiopathic arthritis patients and their parents : analysis of the JAMAR questionnaire.

BACKGROUND: The JAMAR (Juvenile Arthritis Multidimensional Assessment Report) has been developed to evaluate the perception of the patient and his parents on different items: well-being, pain, functional status, quality of life, disease activity, disease course, side effects of medication, therapeutic compliance and satisfaction with illness outcome. Our aim was to compare disease's perception by JIA patients and their parents. METHODS: We included into the study 100 consecutive patients over 7 years of age. We asked both parent and child to complete the JAMAR questionnaire. For each patient we recorded demographic and disease related data. We examined the level of disagreement between children and parents for the quantitative items of the JAMAR: VAS Pain, VAS Disease Activity, VAS Well Being, Juvenile Arthritis Functional Score, HRQoL. Then we looked for a relation between discordance-rate and demographic and clinical variables. RESULTS: Children and parents' median scores for all five items were similar. Individual dyads agreement was low, with a large amount of pairs (80) discordant for at least one item. We found higher MD VAS and JADAS in more discordant dyads, suggesting that when the disease is more active discordance between child and parent increase. CONCLUSION: The JAMAR questionnaire is an important tool that helps clinicians to detect divergent child and parent's disease perceptions. It is essential that both patients and parents fill the JAMAR questionnaire for a complete clinical and psychosocial evaluation.