Family-centredness of a provincial autism programme: A quality assurance evaluation using the Measure of Processes of Care.

BACKGROUND: University researchers worked with 13 children's service provider agencies to conduct a programme evaluation of parents' perceptions of the family-centredness of service spanning 3 years (January 2015 to May 2018). Parents of Ontario children with autism spectrum disorder (ASD) receiving applied behaviour analysis (ABA) programming reported outcomes of their experience of family-centred services (FCS) using the 20-item Measure of Processes of Care (MPOC-20). The purpose of this paper is to report the outcomes of the quality assurance evaluation of FCS as measured by MPOC-20 among parents of children with ASD receiving ABA services. METHODS: A total of 11 490 surveys (from 21 571 potential respondents [53.3%]) were completed. Means and proportions were used to describe the demographics, service utilization and MPOC-20 scores with its 7-point Likert scales, ranging from 1 (lowest) to 7 (highest). RESULTS: The overall provincial MPOC scores were consistent over the 3 years, ranging from very good to excellent, with Respectful and Supportive Care (n = 11 348, x¯  = 6.27, SD = 0.83) reporting the highest scale score and Providing General Information (n = 10 485, x¯  = 5.51, SD = 1.43) the lowest. CONCLUSION: Given the consistently high MPOC scores found in this and other programme evaluations, it is believed that health service providers have caught up to the FCS quality standards proposed 30 years ago. For this reason, the developers of MPOC are now planning a revision of the measure to address its ceiling effects and to integrate contemporary perspectives on family-centred practice for children and their families.

Personal, environmental, and family factors of participation among young children.

OBJECTIVE: The purpose of this study is to assess the influences of environment, population characteristics, and service utilization on participation frequency and involvement in the home setting among children 0 to 5 years. METHOD: Data were collected from parents of 236 children (mean age 3 years and 5 months, SD = 1.30, girls = 152 and boys = 84) using a children's treatment centre in Ontario through an online survey. Two path models measuring home frequency and home involvement were assessed using structural equation modelling. The exogenous factors in the models included child's age, child's sex, child's complexity, number of environmental barriers, income, mother's participation, and service utilization. In addition to participation as the primary outcome, each model explored predictors of service utilization and mother's participation. RESULTS: The involvement model (R2  = 0.46) explained more variance than the frequency model (R2  = 0.33). Age (0.35, P < 0.001) and barriers (0.07, P = 0.001) predicted participation frequency in the home, χ2 (9) = 8.51, P < 0.4, root mean square error of approximation (RMSEA) = 0.00, comparative fit index (CFI) = 1.00. The home involvement model, χ2 (6) = 9.79, P < 0.13, RMSEA = 0.06, CFI = 0.97, showed that increasing age (0.09, P < 0.001), lower complexity (0.13, P = 0.001), and higher mother's participation (0.057, P = 0.001) were significantly related to higher participation. An increase in child's age or complexity significantly influenced service utilization across both models. Complexity reduced mother's participation in both the frequency and involvement models. CONCLUSIONS: This study is one of the first in Canada to examine participation of young children. The aggregation of each unit factor, particularly barriers and complexity, can accrue a large impact on the child's and mother's participation. The potential to mediate this impact by removing environmental barriers and promoting mother's participation merits further study.

Psychometric properties and parental reported utility of the 19-item 'About My Child' (AMC-19) measure.

BACKGROUND: 'About My Child' 19-item version (AMC-19) is a parent-report measure developed to assess the complexity of a child's life due to biological, psychological, social and environmental issues, that can be completed in approximately 5 min. AMC measures two dimensions of complexity: parental concerns and impact on the child. This paper examines the psychometric properties and parent-reported utility of the AMC-19 for children with disabilities or special health care needs. METHOD: Data were gathered from two Canadian studies at CanChild: the 'AMC-19 Pilot' study and the 'Service Utilization and Outcomes (SUO)' study. The AMC-19 Pilot study data allowed us to explore internal consistency and test-retest reliability, as well as parental responses to two open-ended questions on the utility of the AMC-19. The SUO study provided data for analyses of internal consistency and scale property validation with type of diagnosis and service needs. RESULTS: The test-retest ICC was r = 0.83 for concerns and r = 0.87 for impact. Cronbach's alpha across both studies ranged from 0.80 to 0.90. Parents' comments on the AMC-19's utility indicated support for the AMC-19, in particular to identify therapy needs and goals. CONCLUSIONS: The AMC-19 demonstrates strong psychometric properties supporting it as a valuable measure for describing the level of complexity among children with disabilities. We recommend using the AMC-19 in health services research and clinical settings to build dialogue between family and therapists due to its utility reported by parents.

Comparative Effectiveness Research and Children With Cerebral Palsy: Identifying a Conceptual Framework and Specifying Measures.

PURPOSE: A step toward advancing research about rehabilitation service associated with positive outcomes for children with cerebral palsy is consensus about a conceptual framework and measures. METHODS: A Delphi process was used to establish consensus among clinicians and researchers in North America. RESULTS: Directors of large pediatric rehabilitation centers, clinicians from large hospitals, and researchers with expertise in outcomes participated (N = 18). Andersen's model of health care utilization framed outcomes: consumer satisfaction, activity, participation, quality of life, and pain. Measures agreed upon included Participation and Environment Measure for Children and Youth, Measure of Processes of Care, PEDI-CAT, KIDSCREEN-10, PROMIS Pediatric Pain Interference Scale, Visual Analog Scale for pain intensity, PROMIS Global Health Short Form, Family Environment Scale, Family Support Scale, and functional classification levels for gross motor, manual ability, and communication. CONCLUSIONS: Universal forms for documenting service use are needed. Findings inform clinicians and researchers concerned with outcome assessment.