Measuring family-centred practices of professionals in early intervention services in Taiwan.

BACKGROUND: Family-centred practices emphasize professional supports for forming partnerships with families in early intervention. The Measure of Processes of Care for Service Providers (MPOC-SP) measures the perceptions of paediatric service providers in supporting children and families. This study aimed to establish reliability of the Chinese version of the MPOC-SP (C-MPOC-SP) and to examine professional perceptions of family-centred practices in relation to professional discipline and years of experience. METHODS: A convenience sample of 94 physical therapists, occupational therapists, speech-language pathologists, social workers and early childhood educators completed the C-MPOC-SP. Thirty-seven professionals completed the measure a second time within 2-4 weeks for test-retest reliability. Internal consistency and test-retest reliability were examined by Cronbach's α and intra-class correlation coefficient. Comparisons were made across professional disciplines by multivariate analyses of variance followed by analyses of variance. Relationships between years of experience and ratings of family-centred practices were examined by Pearson's correlation coefficients (r). RESULTS: Cronbach's α for items on each of the four scales of the C-MPOC-SP ranged from 0.80 to 0.92, indicating adequate internal consistency. Intra-class correlation coefficient between the initial and repeat completion of the C-MPOC-SP for each scale ranged from 0.56 to 0.77, indicating adequate to excellent test-retest reliability. Mean ratings for the Communicating Specific Information were significantly higher for physical therapists, occupational therapists and speech-language pathologists than for social workers (P = 0.001). The C-MPOC-SP scores were positively correlated with years of experience for all four scales (r = 0.23-0.38; P < 0.05). CONCLUSIONS: This study established adequate internal consistency and adequate to excellent test-retest reliability of the C-MPOC-SP in measuring perceptions of family centeredness of early intervention service providers. Cross-discipline differences were found in communicating specific information about the child. Higher perceptions of family centeredness were associated with more years of experience. The results support the utility of the C-MPOC-SP in professional education and programme evaluation of early intervention services in Taiwan.

Health and functioning in the everyday lives of young children with cancer: documenting with the International Classification of Functioning, Disability and Health--Children and Youth (ICF-CY).

BACKGROUND: Health care focus is shifting for children from surviving childhood cancer to living with it on a daily basis. There is a need to document health and function in the everyday lives of young children with cancer using the multidimensional framework and language of the International Classification of Functioning, Disability and Health--Children and Youth (ICF-CY). AIMS: The aims of this study were (1) to document health and functioning in the everyday lives of young children with cancer using ICF-CY codes and (2) to identify a comprehensive code set that can aid clinical assessment. METHOD: Interviews with children diagnosed with cancer and their parents, were transcribed, reviewed for content and coded to the ICF-CY using linking procedures. RESULTS: A comprehensive code set (n = 70) for childhood cancer was identified. The majority of content identified to codes was related to activity and participation describing social relations with family, peers and professionals, preschool attendance and play, as well as issues related to support and independence. CONCLUSIONS: The ICF-CY can be used to document the nature and range of characteristics and consequences of cancer experienced by children. The identified comprehensive code set could be helpful to health care professionals, parents and teachers in assessing and supporting young children's health and everyday life through the cancer trajectory. The comprehensive code set could be developed as a clinical assessment tool for those caring for young children with cancer. The universal language of the ICF-CY means that the utility of a clinical assessment tool based on identified codes can have wide reaching effects for the care of young children with cancer.

Towards a paradigm shift in pediatric rehabilitation: accelerating the uptake of evidence on participation into routine clinical practice.

PURPOSE: Evidence for the importance of focusing on participation to promote health and wellbeing in childhood-onset disability exists, but practice is slow to change. This paper provides a knowledge translation roadmap to accelerate uptake of participation evidence into day-to-day practice. MATERIALS AND METHODS: A structured roadmap to guide knowledge translation initiatives for implementing participation-based practices in co-creation with service users was developed based on elements from: the Five-factorframework for predicting implementation outcomes, the Cultural Cone framework, and the Knowledge-to-Action model. RESULTS: Guiding principles paired with examples of multi-component knowledge implementation strategies to facilitate readiness for change by stakeholders at the micro (e.g., client/family, service providers), meso (e.g., administrators within organisations such as rehabilitation centres, hospitals, schools) and macro (e.g., local and governmental policy, regulatory bodies) levels are introduced. Solution-based strategies are provided to facilitate "readiness to change" for each stakeholder group. The strategies are examples for successful implementation of evidence-based interventions/approaches that can be contextualized across settings. CONCLUSIONS: The knowledge translation roadmap can assist children and families, service providers, administrators, and policymakers to bridge existing knowledge-to-practice gaps surrounding participation. Partnering and collaborating through a "family-clinician-manager-community leader-policymaker" synergy is key for achieving strategic practice change focussed on participation.Implications for RehabilitationSound evidence surrounding the topic of participation, including effective assessments and interventions, is available and ready for use.Shifting towards participation-focused practices for children and youth with disabilities requires a systemic multi-level KT approach.Our Participation-KT roadmap, comprised of a framework and a list of principles and strategies for implementation, can be used to guide all stakeholders to foster a shift in practice.Forming partnerships and working collaboratively with all stakeholders is key for successful implementation.

A review and analysis of the effectiveness of early intervention programs.

A review was made of 27 studies describing early intervention for biologically impaired infants and young children. Although every study provided some type of documentation of outcome, most studies failed to meet common criteria for scientific research, such as specification of inclusion criteria, documentation of reliability, random assignment, and/or the use of control/contrast groups. Studies were grouped into four classifications on the basis of experimental design as follows: retrospective, prospective-no control group, prospective-control/contrast group, and prospective-random group assignment. A comparative analysis was made of the effectiveness of findings on the basis of statistical evidence and clinical support. Statistical procedures were used in 59% of the studies and statistical support for the effectiveness of early intervention was reported in 48% of the studies. Effectiveness on the basis of subjective, clinical conclusions was reported in 93% of the studies. Implications of the discrepancy between effectiveness based on statistical evidence and clinical conclusions are discussed.

Revision of the International Classification of Impairments, Disabilities, and Handicaps: developmental issues.

Variability in approaches to define and classify disability has constituted persistent problems in documenting the epidemiology of disability and providing appropriate services. The major institutions of health care, mental health, and welfare often have separate systems of classification and terminology related to defining eligibility for programs and funding for services. In 1980, the International Classification of Impairments, Disabilities and Handicaps-ICIDH was published by the World Health Organization as a companion document of the International Classification of Disease to document the consequences of illness or injury. Current problems concerning the classification of childhood disability in health, education, and related services have resulted in growing interest in the revision of the ICIDH as a classification tool. The strengths and limitations of the ICIDH are examined in general, as well as with specific reference to its ability to document the nature and epidemiology of childhood disability. This paper (1) describes the ICIDH taxonomy and representative contributions; (2) reviews issues and concerns contributing to its revision; (3) summarizes changes in the revised ICIDH2 draft document, and (4) identifies issues of particular relevance to children and public health applications.

Sibling relationships of children with autistic, mentally retarded, and nonhandicapped brothers and sisters.

The subjects were 90 children between 6 and 15 years of age, 30 with autistic, 30 with mentally retarded, and 30 with nonhandicapped brothers or sisters. The children were questioned about their sibling relationships in an open-ended interview, and, in the case of children with handicapped siblings, they also responded to questions about particular problems they faced in regard to their brothers or sisters. In addition, mothers filled out a behavior rating scale in which they described the positive and negative aspects of their children's behavior toward the sibling. In general, children and mothers rated the sibling relationships positively. Group comparisons indicated that children with autistic and mentally retarded siblings did not differ on any self-report measures. Children with nonhandicapped siblings reported that their family relations were slightly more cohesive but otherwise did not differ in terms of their self-reports from children with handicapped siblings. Mothers of nonhandicapped children, however, rated the sibling relationships more negatively than did mothers of handicapped children. Further analyses revealed that status variables (age, gender, family size) were not as highly correlated with the quality of sibling relationships with handicapped children as were specific problem areas (e.g., perceptions of parental favoritism, coping ability, concerns about the handicapped child's future).

The social and symbolic quality of autistic children's communication.

The developmental status of the communicatory behavior of 11 autistic children was assessed. Children were observed during free play sessions under two conditions: when teachers were present to direct the children's behavior and when teachers were absent and the children played among themselves. Mean changes in the children's communicatory behavior were measured over time (8 months) using the behavior scale designed for this study. The relationship between the developmental status of the children's communicatory behavior and standardized measures of their social and cognitive functioning (e.g., IQ, Vineland Social Age) was also assessed. The results revealed that the quantity and social quality of autistic children's communicatory behavior were greater in the teachers' presence than in their absence and that the symbolic and social quality of the children's communicatory behavior increased over 8 months. Also, positive correlations were found between social and symbolic levels of communication and standardized tests of social and cognitive functioning. The implications of these findings for the assessment of autistic children are discussed.

Needs expressed by mothers and fathers of young children with disabilities.

One aspect of family adaptation to a young child with disabilities was investigated through comparison of expressed needs of mothers and fathers and examination of the relation of those needs with selected child and family characteristics. A diverse sample of more than 400 parents completed the Family Needs Survey (Bailey & Simeonsson, 1988). A factor analysis of the items for mothers yielded six distinct factors. A confirmatory factor analysis of needs expressed by fathers indicated a structure that differed significantly from that found for mothers. Mothers expressed significantly more needs than did fathers. Although SES and disability type accounted for significant variance in needs of mothers, an examination of mean values suggested the effect to be of limited clinical significance.

Functional assessment of Chinese children with the ABILITIES index.

The diagnosis and classification of children with disabilities are persistent concerns in paediatric and habilitative services. These concerns are magnified in international contexts and restrict comparative research and policy development. Even within classifications such as mental retardation, hearing impairment and physical impairment, children can vary widely in the nature and severity of manifested conditions. In the fields of disability and rehabilitation there is a growing interest in functional measurement. Accompanying this awareness is a corresponding recognition of the value of classification approaches which are compatible with the WHO framework of the International Classification of Impairments, Disabilities, and Handicaps. This paper examines issues pertaining to the classification of children with disabilities and describes the development of the ABILITIES Index, a functional assessment measure yielding a profile of individual characteristics. The cross-cultural applicability of the measure is documented on the basis of data for children in the People's Republic of China.

Students with disabilities: a national survey of participation in school activities.

INTRODUCTION: The policies of integration and full inclusion in school activities have been enacted to promote the independence and social participation of students with disabilities. This study examined the nature and extent of participation in schools by students with disabilities in the context of the physical, social and psychological features of the school environment. METHOD: A national survey was completed by 1180 teachers of students with disabilities in the US describing student participation in school activities encompassing involvement in social activities, sports, academic and artistic/creative endeavours. RESULTS/CONCLUSIONS: Multivariate analysis revealed that school life in elementary, middle and high school could be defined by six distinct factors describing individual and group roles. Structural equation modelling yielded a second order latent variable that captured the complex and multi-dimensional aspect of participation, accounting for availability, eligibility, student characteristics/status, and student choice within a larger framework of participation.

Applying the International Classification of Functioning, Disability and Health (ICF) to measure childhood disability.

The International Classification of Functioning, Disability and Health-ICF addresses the broad need for a common language and classification of functioning and disability. A parallel need is appropriate measures compatible with the content of the ICF to document the nature and impact of limitations of function, activities and participation. The interaction of developmental characteristics and disability among children represent special challenges for classification as well as measurement. Demographic trends emphasize the need for universal measures that encompass the components of the ICF and can be used in surveillance, screening and evaluation. This paper identifies issues related to application of the ICF to measure disability in childhood; reviews approaches and tools to assess childhood disability and identifies priorities for the development of measures of functioning and disability in children based on the ICF. The development of measures should be framed within a framework of children's rights and application of the biopsychosocial model to document profiles of functioning and disability of children.

Professional skills, concerns, and perceived importance of work with families in early intervention.

Innovations brought about by Public Law 99-457 require early intervention personnel to expand their work practices to involve and support families in the provision of early intervention services. To support training needs in this area, and to understand possible barriers to change, this study examined the extent to which 142 early interventionists from two states felt competent in working with families, valued family roles, and were concerned about changing to family-centered practices. Relationships among these characteristics and experience, discipline, and job category were explored. In general, nurses and social workers scored higher than did educators and other health-care professionals on several dimensions of family-centered care. Many professionals expressed concerns about collaboration.

Preparing professionals to serve infants and toddlers with handicaps and their families: an integrative analysis across eight disciplines.

This article summarizes the status of, and recommendations for, preparation programs for early intervention personnel across eight disciplines. Surveys were conducted to determine the extent to which entry-level students in each discipline receive academic preparation and clinical experiences to provide services to infants and toddlers with disabilities and their families. Although considerable variability was found across disciplines, the average student receives little specialized information--practical knowledge--relative either to the infancy period or to working with families. Alternative strategies for improving infant personnel preparation are discussed and policy implications of each are addressed.

Early prevention of childhood disability in developing countries.

The concept of prevention, while implicit in most early intervention efforts, has not been comprehensively articulated as a basis for conceptualizing early intervention services. The growing recognition of the importance of early identification and intervention for infants and young children, and involvement of the family, are factors which contribute to conceptualizations of services which are preventive in nature. This recognition parallels broader concerns for family support programmes which have a preventive focus and seek to enhance the development of children and families. The purpose of this paper is to present a comprehensive framework for the provision of child and family service by conceptualizing early intervention in terms of levels of prevention. Specifically, the concept of primary, secondary, and tertiary levels of prevention will be presented as a framework suitable to encompass the preventive function of community based rehabilitation. The relevance of early prevention is based on the premise that the condition of childhood disability can be prevented at primary, secondary, and tertiary levels. Viewed in this way, the problem or condition of developmental delay or disability in children can be addressed at each of the three levels to effect a reduction of its expression, its duration or extended impact. Primary, secondary, and tertiary prevention can be implemented in the context of community based rehabilitation to address these goals: (a) enhance development and minimize the potential for delay; (b) minimize the need for special education and related services; and (c) minimize the likelihood of institutional or other restrictive care outcomes.

PIP: The concept of primary, secondary, and tertiary levels of prevention offers a useful framework for the problem of childhood disabilities in developing countries. Such a model is based on the following assumptions: 1) developmental delays and disabilities are preventable both prenatally and postnatally; 2) causal chains can be delineated for differentiating postnatal prevention at the three levels; 3) prevention efforts can be potentiated by capitalizing on lead time in early development; 4) at each level of prevention, there are indicated services for the child and linked services for families; and 5) the levels of prevention provided in a given system will be governed by that system's philosophy, priorities, and resources. At the primary level, the goal is to reduce the occurrence of developmental disability through a reduction of risk factors such as low birthweight and malnutrition and family awareness that child development can be influenced by their efforts. At a secondary prevention level, the goal is to reduce the extent of manifested childhood disability and shorten its duration. infant stimulation and remediation programs operate at this level and are complemented by efforts to foster the family's ability to promote child development. In tertiary prevention, the aim is to prevent or reduce complications of disability (physical and behavioral) that lead to a need for institutionalization. At this level, there may be a need for family counseling and other intensive supports. The intervention program should be conducted within the context of the primary health care system, build upon existing service channels, and strengthen the family's role as the central determinant of child health and development.

Child disability and family needs in the People's Republic of China.

As developing countries have made progress in their efforts to reduce child mortality, there is an increasing need to address the prevention and reduction of childhood disability. The People's Republic of China has built on its success in primary health care and is extending its attention to identifying the scope of needs of individuals with disabilities. The focus of this exploratory study was to identify the nature of child and family needs among Chinese families with disabled children. A sample of 101 families from two settings (urban and rural) responded to the Family Needs Survey describing their life with a child with disabilities. The findings revealed that information was a pressing need for Chinese families. Financial help and locating a doctor were the other major expressed needs. Our discussion suggests that the type of child impairment and the setting may be factors related to variability in expressed needs. Of interest was the fact that, while some needs may be culture specific, the pattern of needs was consistent with other cultures as well.

Assessment of infant and early childhood development in a periurban Bolivian population.

PIP: A study was conducted of infant development in Quintanilla Area, a group of recently settled communities in periurban Cochabamba, Bolivia. The research was a substudy of a larger investigation supported by the World Health Organization (WHO) into the changing patterns of breast-feeding and child spacing. 400 mothers with children aged 6-18 months were enrolled in the WHO study and interviewed in the household setting during June-July 1991. The infant development substudy administered the Bayley Scales of Infant Development (BSID) to a convenience sample of 18 boys and 12 girls of these mothers. With a mean score of 100 and a standard deviation of 15, the BSID provides a Mental Development Index and a Psychomotor Developmental Index. Scores more than 1.5 standard deviations below the mean can be indicative of developmental delay. Three boys and three girls, or 20% of the infants in this study were found to have scores more than 1.5 standard deviations below the mean and may therefore be considered to potentially be developmentally disabled. Compared to the US, a larger proportion of children in this study was disabled. 20% is also at the high end of UNICEF and UNESCO estimates. The authors note that one third of the mothers of children with suspected disabilities received no prenatal care, but each of these women was attended by a physician at the birth of the child. No prenatal care and the attendance of a physician at delivery, in this environment, is often indicative of an high-risk delivery potentially including conditions such as placenta previa, prolonged labor, and asphyxiation of the newborn. High-risk delivery may also be the result of trauma associated with traditional practices such as manteo, during which a pregnant woman is swung and bounced in a blanket or hammock with the goal of repositioning the fetus. The authors also caution the possibility that convenience sampling and small sample size may have over-identified children with developmental delays compared to other children of their same cultural background.^ieng

Social cognition and aggression in delinquent adolescent males.

The relationship of aggression to several social cognitive variables in delinquent adolescent males was investigated. Subjects were fifty-eight institutionalized males identified by peers as high-aggressive or low-aggressive. Participants were administered measures of perspective taking, moral judgment, and person perception. The findings indicated that only perspective-taking ability was significantly related to aggressive behavior in delinquents. High-aggressive delinquents were less able to perceive others' viewpoints than were low-aggressive delinquents. These findings are consistent with previous research concerning perspective taking and aggression, but disconfirm research involving other social cognitive variables and aggression. Results further indicate the importance of studying social cognitive variables as they relate to relevant clinical behaviors.

Emotional disturbance and the development of self-consciousness in adolescence.

The development of self-consciousness and its relationship to emotional disturbance was examined in early and late adolescence. The Imaginary Audience Scale was administered to emotionally disturbed and nondisturbed adolescents. As predicted, results indicated that self-consciousness decreased with age in nondisturbed adolescents. For the emotionally disturbed adolescents, the development of self-consciousness in temporary situations did not follow consistent patterns, as indicated by interaction effects. A significant negative relationship was found between intelligence test scores and self-consciousness in the disturbed group. The findings support the premise that social-cognitive shifts found in early to late adolescence are disrupted in disturbed populations. The mediating role of social experience as a factor in cognitive and emotional development is discussed.