Impact of "early intervention" parent workshops on outcomes for caregivers of children with neurodisabilities: a mixed-methods study.

PURPOSE: This study explored the feasibility, impact and parent experiences of ENVISAGE (ENabling VISions And Growing Expectations)-Families, a parent-researcher co-designed and co-led program for parents/caregivers raising children with early-onset neurodisabilities. METHODS: Parents/caregivers of a child with a neurodisability aged ≤6 years, recruited in Australia and Canada, participated in five weekly online workshops with other parents. Self-report measures were collected at baseline, immediately after, and 3 months post-ENVISAGE-Families; interviews were done following program completion. Quantitative data were analyzed with generalized estimating equations and qualitative data using interpretive description methodology. RESULTS: Sixty-five parents (86% mothers) were recruited and 60 (92%) completed the program. Strong evidence was found of effects on family empowerment and parent confidence (all p ≤ 0.05 after the program and maintained at 3-month follow-up). The ENVISAGE-Families program was relevant to parents' needs for: information, connection, support, wellbeing, and preparing for the future. Participants experienced opportunities to reflect on and/or validate their perspectives of disability and development, and how these perspectives related to themselves, their children and family, and their service providers. CONCLUSIONS: ENVISAGE was feasible and acceptable for parent/caregivers. The program inspired parents to think, feel and do things differently with their child, family and the people who work with them.Implications for rehabilitationENVISAGE (ENabling VISions And Growing Expectations)-Families is a co-designed, validated parent/researcher "early intervention and orientation" program for caregivers raising a child with neurodevelopmental disabilities (NDDs).ENVISAGE-Families empowered parents' strengths-based approaches to their child, family, disability, and parenting.ENVISAGE-Families increased caregivers' confidence in parenting children with NDD's and provided them tools to support connection, collaboration, and wellbeing.Raising children with NDD can have a profound impact on caregivers, who can benefit from strengths-based, future focused supports early in their parenting experience.

Parent-child interactions and children with cerebral palsy: An exploratory study investigating emotional availability, functional ability, and parent distress.

BACKGROUND: Emotionally available parent-child relationships are supportive of child health and development. When a child has cerebral palsy, a range of child and parent factors can potentially impact the parent-child relationship; however, little research has specifically addressed this question. The aim of this study is to investigate links between parent-child emotional availability and both child functional abilities and parent distress in a sample of parents and children with cerebral palsy. METHODS: Twenty-three mothers (mean age 37.3+/-5.7 years) and their children (mean age 4.9+/-3.3 years) with cerebral palsy completed a 20 min videoed parent-child interaction, scored using the Emotional Availability Scales. Parents also completed the Depression Anxiety Stress Scale, the Paediatric Evaluation of Disability Inventory, and the Strengths and Difficulties Questionnaire. Correlational analyses were conducted, and qualitative observations were made. RESULTS: Parent-child dyads in which the parent reported depressive symptoms scored poorer on all aspects of parent-child emotional availability. Where parents reported experiencing anxiety or stress, increased parent hostility and decreased child responsiveness was found. There was no relationship between child functional abilities and either parent distress or parent-child emotional availability. Parent sensitivity, structuring, and nonintrusiveness were negatively associated with child peer problems. Both child responsiveness and child involvement were negatively associated with hyperactivity/inattention. Observations of video footage suggested that parent implementation of therapy strategies impacted negatively on parent-child emotional availability for some dyads. CONCLUSION: Findings from this study are consistent with the wider literature showing a link between parental depression and the parent-child relationship and extend this link to the cerebral palsy population. The importance of routine screening for parental mental health problems in early childhood intervention is highlighted by these findings. In addition, this study emphasizes the need to better understand how therapists support parents to implement therapeutic strategies to minimize negative impact on the developing parent-child relationship.

Efficacy of interventions to improve feeding difficulties in children with autism spectrum disorders: a systematic review and meta-analysis.

BACKGROUND: Feeding difficulties are relatively common in children with autism spectrum disorders (ASD), but current evidence for their treatment is limited. This review systematically identifies, reviews and analyses the evidence for intervention in young children with ASD and feeding difficulties. METHODS: A comprehensive search strategy was used to identify studies from January 2000 to October 2013. Studies were included if they described interventions where the goal was to increase desirable eating behaviours or decrease undesirable eating behaviours using an experimental design, including single-subject research methodology. Studies were reviewed for descriptive information, and research quality was appraised using a formal checklist. Individual study findings were compared using Improvement Rate Difference (IRD), a method for calculating effect size in single-subject research. RESULTS: Overall, 23 papers were included. All studies reviewed had five or fewer participants, and reported on operant conditioning style intervention approaches, where the child is prompted to perform an action, and receives a contingent response. Where quality measures were not met, it was primarily due to lack of detail provided for the purposes of replication, or failure to meet social validity criteria. Meta-analysis indicated a medium-large effect size [mean = 0.69, 95% confidence interval (CI) 0.60 to 0.79] when the outcome measured was an increase in desirable behaviours (e.g. consuming food), but a small-negligible effect size (mean = 0.39, 95% CI 0.18 to 0.60) when the outcome measured was a decrease in undesirable mealtime behaviours (e.g. tantrums). Only a small proportion of studies reported outcomes in terms of increased dietary variety rather than volume of food consumed. CONCLUSIONS: The reviewed literature consisted primarily of low-level evidence. Favourable intervention outcomes were observed in terms of increasing volume, but not necessarily variety of foods consumed in young children with ASD and feeding difficulties. Further research in the form of prospective randomized trials to further demonstrate experimental effect in this area is required.

Perceived freedom in leisure and physical co-ordination ability: impact on out-of-school activity participation and life satisfaction.

BACKGROUND: Perceived freedom in leisure (PFL) is explored as a potential mechanism mediating relationships between physical co-ordination ability and both global life satisfaction and leisure-time physical activity participation for boys with differing levels of physical co-ordination ability. Understanding psychological mechanisms contributing to low rates of participation in physical activities for boys with developmental co-ordination disorder (DCD) is a clinical and research priority with potential to inform clinical interventions and preventive health initiatives. METHOD: Sixty boys aged 10-13 years with DCD and 113 boys without DCD completed self-report measures of PFL and life satisfaction. Seven-day leisure-time activity diaries and 12-month retrospective recall questionnaires were completed by parents. RESULTS: Lower self-appraisals of PFL and overall life satisfaction were found for boys with DCD compared with boys without DCD. PFL mediated relationships between physical ability and both life satisfaction and team sport participation. CONCLUSION: Perceived freedom in leisure, comprising self-appraisals of leisure needs satisfaction and competence, depth of involvement and perceived control over leisure outcomes, was a significant mechanism influencing leisure-time participation and life satisfaction for boys. The implications for effective intervention and preventive health programmes are discussed.

Measuring functional outcome in paediatric patients with burns: methodological considerations.

Methodological criticisms of research undertaken in the area of paediatric burns are widespread. To date, quasi-experimental research designs have most frequently been used to examine the impact of impairments such as scarring and reduced range of motion on functional outcomes. Predominantly, these studies have utilised a narrow definition of functioning (e.g. school attendance) to determine a child's level of participation in activities post-burn injury. Until recently, there had been little attempt to develop and/or test a theoretical model of functional outcome with these children. Using a conceptual model of functional outcome based on the International Classification of Functioning, Disability and Health, this review paper outlines the current state of the research literature and presents explanatory case study methodology as an alternative research design to further advance the study of functional outcome post-burn injury.

What influences the functional outcome of children at 6 months post-burn?

The contribution of demographic, injury, pre-morbid, and parent factors to a child's functional outcome at 6 months post-burn injury was examined. Sixty-eight children, aged 5-14 years with percent total body surface area (%TBSA) burns ranging from <1 to 35%, and their primary caregivers participated in the study. It was expected that pre-morbid and parent factors but not injury factors would have a significant impact on the functional outcome of children at 6 months post-burn. Injury factors included the percent of total body surface area burned, number of operative procedures, and source of the burn (i.e. flame burn, scald burn). Pre-morbid child factors included the presence or absence of behaviour problems, psychological or psychiatric problems, learning difficulty or developmental delay. Parent factors included anxiety, depression, coping processes, and social support. Whilst investigating the contribution of these factors to functional outcome, the effect of demographic factors (i.e. age, gender, family socioeconomic status, and the number of previous hospitalizations) was controlled for and investigated. Analyses included two hierarchical multiple regression analyses that supported the expected results. R was significantly different from zero at the end of each step in both hierarchical regression analyses, indicating that each group of factors added significantly to the fit of the model. After step 4 in the final regression model with all independent variables in the equation, R=0.85, F(18,49)=6.89, P<0.001.

Test/retest reliability and inter-rater agreement of the Quality of Upper Extremities Skills Test (QUEST) for older children with acquired brain injuries.

Test/retest reliability and inter-rater agreement was established on the Quality of Upper Extremities Skills Test (QUEST) for 16 children between 6 and 16 years of age who had an acquired brain injury. Performance on the QUEST was videotaped for the purpose of scoring, and some modifications were made to the administration and scoring of the assessment. Intra-class correlation indicated high agreement for test/retest reliability (0.90 to 0.95), and inter-rater reliability (0.84 to 0.94) across all subtests. The findings are discussed in terms of ongoing test refinements and the extension of the original age range and diagnostic group for which the test was designed.

Concurrent validity of the Functional Independence Measure for Children (WeeFIM) and the Pediatric Evaluation of Disabilities Inventory in children with developmental disabilities and acquired brain injuries.

The Functional Independence Measure for Children (WeeFIM) and the Pediatric Evaluation of Disability Inventory (PEDI) are the most commonly used measures of functional performance in children. The purpose of this study was to determine the concurrent validity of the instruments when used with children with developmental disabilities and acquired brain injury. The subjects were 41 children, age 1.3 to 9.5 years, who were receiving inpatient or outpatient services at a pediatric rehabilitation unit in Brisbane, Australia. Spearman correlation coefficients between the two tests were greater than 0.88 for self care, transportation/locomotion, and communication/social function. The high correlations indicate that the two tests measure similar constructs. Choosing between the tests depends on situational requirements and depth of information required.

The WeeFIM instrument: its utility in detecting change in children with developmental disabilities.

OBJECTIVE: To examine the utility of the WeeFIM instrument ("WeeFIM") in detecting changes in the functional status of children with disability. DESIGN: Prospective longitudinal design with correlation and responsiveness analysis. SETTING: Three facilities providing services to children with developmental disabilities in western New York State. PARTICIPANTS: Two hundred five children (72 girls, 133 boys) with identified medical disabilities receiving special services were administered the WeeFIM. Subjects ranged in age from 11 to 87 months and came from diverse socioeconomic and ethnic backgrounds. Scores for 174 children were available for 3 administrations performed over a 1-year period. MAIN OUTCOME MEASURES: The responsiveness of the WeeFIM instrument was examined using 5 statistical procedures: Reliability Change Index, Proportional Change Index, effect size, standardized response means, and paired t tests. RESULTS: All 5 indexes of responsiveness indicated statistically significant (p < .05) or reliable changes over time. The transfer subscale of the WeeFIM showed a skewed distribution that affected the results for some responsiveness indexes. The advantage, limitations, and assumptions of the responsiveness indexes are described and graphic examples of change over time are presented to validate the responsiveness of the WeeFIM instrument. CONCLUSION: The WeeFIM instrument showed the ability to document change in functional abilities over a 1-year period in children with chronic disabilities.

Functional assessment and care of children with neurodevelopmental disabilities.

OBJECTIVES: To determine the relationship between pediatric assessment scores and ratings by parents and teachers regarding the amount of assistance required to complete basic activities of daily living; and to examine the relationship among scores for three commonly used pediatric assessments. DESIGN: Prospective correlational study. 205 children with developmental disabilities. The children ranged in age from 11 to 87 mo and included 72 females and 133 males of diverse socioeconomic and ethnic backgrounds. The children were evaluated by using the Battelle Developmental Inventory Screening Test, Vineland Adaptive Behavior Scales, Functional Independence Measure for Children (WeeFIM instrument), and the Amount of Assistance Questionnaire. RESULTS: The test-retest reliability coefficients for items on the Amount of Assistance Questionnaire were found to range from 0.82 to 0.97. Correlations among subscale scores and amount of assistance ratings were highest for the WeeFIM instrument and Battelle Developmental Inventory Screening Test. The highest correlation was between WeeFIM total rating and total amount of assistance rating (r = 0.91). CONCLUSION: Total WeeFIM instrument ratings and severity of disability were the best predictors of amount of assistance ratings provided by parents and teachers.

The functional outcome of children after a burn injury: a pilot study.

Assessment of functional outcome can be used as a measure of the effectiveness of intervention during recovery from a burn injury. This pilot study identifies the factors that are likely to be most important for determining standardized functional outcome measures for children after a burn injury; it highlights the contribution of these factors to variations in children's postburn outcomes. A focus group of 8 parents and a self-report questionnaire administered to 12 children and 13 parents were the means of obtaining information for this exploratory study. Itching was found to be one of the primary impairments that contributed to reduced functional outcome during skin healing after a burn injury. The activities of children who had been burned that were most frequently affected by the injury (as reported by parents) were schoolwork and sports; these were closely followed by sleeping, playing with other children, and unliked activities. Least affected activities were enjoying the family, eating, seeing friends, watching television, and bathing or showering. Eighty-five percent of parents reported at least some level of interference with the listed daily activities. Burn injuries are likely to cause interference with several aspects of a patient's daily life. As a result, families require ongoing support and monitoring. Further research should longitudinally compare the performance of children who have been burned with other children and adolescents.

Postburn dyspigmentation: its assessment, management, and relationship to scarring--a review of the literature.

Dyspigmentation often arises after deep partial- or full-thickness burns, and assessment of postburn scarring traditionally includes pigmentation. However, the relationship between dyspigmentation and scarring remains unclear. The physiologic basis of dyspigmentation has often been disregarded, and in pathologic states, its origin has been assumed to be in the epidermal melanin. Greater understanding of dyspigmentation among clinicians is required to increase knowledge and accuracy of assessment. This article aims to review the physiologic basis of pigmentation, and address the assessment, preventative management, and treatment options for postburn dyspigmentation.

Stereotypes, stigma, and mental illness: learning from fieldwork experiences.

OBJECTIVES: A phenomenological study explored occupational therapy students' experiences in psychiatric fieldwork. Of particular interest were students' experiences with and perceptions of persons using psychiatric services. METHOD: Data were gathered from 16 informants, via in-depth interviews and participant observation, on multiple occasions throughout the students' fieldwork affiliations in hospital and community psychiatric service settings. Triangulation of data gathering methods and member checking were used to strengthen the interpretive validity of the study. RESULTS: Informants manifested stereotyped preconceptions and associated anxiety regarding persons labeled as mentally ill, though the strength of such beliefs and feelings was found to diminish as fieldwork progressed. Sensationalized popular images of mental illness (e.g., that it is linked with malevolence) and some aspects of academic and clinical education (e.g., a deficit focus) seemed to adversely affect students' perceptions. CONCLUSIONS: Assisting students to acquire a sound appreciation of the humanness of persons with psychiatric disorders is an educational imperative. There is a need to critically appraise academic and fieldwork practices in psychiatric occupational therapy.

Qualitative changes in dynamic tripod grip between seven and 14 years of age.

The dynamic tripod grip during handwriting was examined among seven- to 14-year-old children. Four components were measured: (a) degree of index-finger flexion; (b) degree of forearm pronation/supination; (c) number of fingers used on the pencil shaft; and (d) thumb and forefinger opposition. Developmental trends were identified for measures (a) and (b), suggesting refinement of the dynamic tripod grip with age.

Correlation of the Bruininks-Oseretsky Test of Motor Proficiency with the Southern California Sensory Integration Tests.

Correlations between the Bruininks-Oseretsky Test of Motor Proficiency (BOTMP) and the Southern California Sensory Integration Tests (SCSIT) were studied by using test results obtained from a sample of 49 learning-disabled children. It was found that those SCSIT tests with a motor component correlated significantly with the BOTMP battery composite scores. The fine motor composite scores of the BOTMP reflected the greatest percentage of significant correlation with SCSIT tests. These results suggested that the BOTMP would be useful for screening children for referral to occupational therapy by educators. In addition, the high correlation of the BOTMP with the SCSIT motor tests indicated that the BOTMP may be appropriate for use in clinical research to evaluate the effectiveness of sensory integrative procedures in relation to motor function.