Promoting Cycling Skills and Participation with Two-Wheel Bike Riding for Children with Neurodevelopmental Disorders.

AIMS: Evaluate changes in two-wheel cycling skills and biking participation goals for children with neurodevelopmental disorders (ND) receiving a home visit and email following iCan Bike camp. METHODS: Participants: 11 children with ND, 9-16 years, and one of their parents. A cycling skills checklist, two-wheel riding Goal Attainment Scaling (GAS), and biking participation GAS were completed before camp (T1), at support visit after camp (T2), and three months following camp (T3). Parents completed biking practice logs. Participants received a support visit to provide instruction, coaching, and address questions, and an email to check progress. RESULTS: Significant changes were made in two-wheel riding GAS T1 to T2 (p = 0.01), biking participation GAS T2 to T3 (p = 0.02), and cycling skills T1 to T2 (p = 0.01) and T2 to T3 (p = 0.02). Practice frequency was related to cycling skills (0.72, p = 0.01) and biking participation (0.86, p < 0.001); cycling skills were related to biking participation (0.81, p = 0.003). CONCLUSION: Children improved cycling skills and biking participation following camp, support visit, and email check-in. Children who practiced more had greater cycling skills and biking participation. Encouraging weekly bicycling and providing support may promote cycling skills and participation following camp.

Effect of Tele-exercise to Promote Empowered Movement for Individuals With Spinal Cord Injury (TEEMS) Program on Physical Activity Determinants and Behavior: A Mixed Methods Assessment.

OBJECTIVE: To assess the effects of group tele-exercise participation on physical activity (PA) determinants and behavior as identified by social cognitive theory (SCT) in individuals with spinal cord injury (SCI). DESIGN: This clinically registered non-randomized trial [NCT05360719] used a single-group parallel mixed methods design. Quantitative and qualitative primary measures were assessed at pre-program and after 8-week intervention completion (post-program), with an additional 8-week period retention to capture quantitative assessments only. SETTING: Community. PARTICIPANTS: Individuals with chronic SCI (N=22, injury duration 2-50 years) aged 26-68 years (10 male/12 female). INTERVENTION: An 8-week group tele-exercise program for individuals with SCI consisting of biweekly 60-minute classes delivered via live Web-conferencing software. MAIN OUTCOME MEASURES: Exercise self-efficacy (Exercise Self-efficacy Scale for SCI: ESES), outcome expectations for exercise (Multidimensional Outcome Expectations for Exercise: MOEES), weekly PA minutes measured through quantitative assessments (Leisure Time PA Questionnaire for SCI: LTPAQ), and parallel qualitative thematic analysis of focus group interview transcripts. RESULTS: Congruence between numeric and thematic findings was present for exercise self-efficacy and self-evaluative exercise outcome expectations. Improved exercise self-efficacy was influenced by exercise knowledge gained during program participation. Increased expectations of internal exercise outcomes, such as influence on psychological state and overall mood, occurred after program participation. Participant descriptions of the portability and sustainability of the program leading to added movement in everyday life were not reflected in the numeric scores of LTPAQ assessment. CONCLUSIONS: Participation in an 8-week group tele-exercise program positively affected personal determinants of PA behavior immediately after participation. Future investigations should include a control group and biophysical PA measures such as wearable digital health devices.

Nutrition-Related Experiences of Women With Perinatal Depression During the COVID-19 Pandemic: A Qualitative Study.

Women with perinatal depression are at a high risk for unhealthy dietary behaviors but whether the coronavirus disease 2019 (COVID-19) pandemic has exacerbated this risk is unknown. Here we report the findings of a qualitative study exploring the impact of the COVID-19 pandemic on nutrition-related experiences of women with perinatal depression. Using a qualitative descriptive approach, in-depth interviews were conducted with 18 women with a history of perinatal depression and 10 healthcare providers. A semistructured format elicited how food and nutrition-related behaviors of women with perinatal depression were affected by the COVID-19 pandemic. Thematic analysis identified 4 themes related to the COVID-19 pandemic: (1) Adaptations in shopping and cooking behaviors; (2) increases in stress and declines in respite; (3) declines in support and increases in isolation; and (4) low levels of breastfeeding guidance. Our findings confirm the importance of resilience among women with perinatal depression and future research is needed to elucidate the mechanisms connecting resilience and dietary behaviors.

Supporting optimal dietary behaviors in women with perinatal depression: A qualitative exploration of experiences, practices, and challenges.

BACKGROUND: Women with perinatal depression (PD) are at high risk for unhealthy dietary behaviors and suboptimal child feeding practices. Despite evidence supporting the importance of healthful nutrition-related behaviors during and after pregnancy, few behavioral nutrition interventions for women with PD have been developed. The objectives of this study were to identify nutrition-related challenges and needs among women with PD and to elucidate the role that feeding plays in mother-infant interaction, to inform the development of nutrition interventions. METHODS: Using a qualitative study design, in-depth interviews were conducted with 18 mothers with a history of PD and 10 interdisciplinary healthcare providers with expertise in PD. Data were thematically analyzed using a hybrid inductive and deductive coding approach. RESULTS: Mean age of mothers was 31 ± 6 years, 56% identified as non-Hispanic White, and 33% identified as Black/African American. Eighty percent of healthcare providers practiced for more than five years. Six themes were identified: (a) Time scarcity mindset; (b) Importance of social support; (c) Unrealistic expectations of motherhood; (d) Mom as the last priority; (e) Postpartum body changes and shape ideals; and (f) Contentment associated with infant and young child feeding. CONCLUSION: Women with PD have several needs pertaining to their nutrition and that of their children. The findings from this study illustrate key considerations and recommendations for addressing these needs.

Adaptive behavior and mastery motivation in children with physical disabilities.

BACKGROUND: Adaptive behavior consists of conceptual, social, and practical skills and describes the ability of individuals to manage environmental demands, interact with others, and engage in activities to meet ones needs. Mastery motivation is an intrinsic characteristic that enables persistence when attempting to master a skill. Children with physical disabilities often demonstrate less effective adaptive behaviors and lower mastery motivation than their peers without disabilities, which may subsequently impact development and participation in daily activities. Therefore, it may be beneficial for pediatric rehabilitation practitioners to focus intentionally on facilitating effective adaptive behaviors in children with physical disabilities as they aim to support child development and function. OBJECTIVE: This perspective paper highlights the importance of adaptive behavior for children with physical disabilities, discusses methods of assessment, and illustrates intervention principles and strategies to support the development of appropriate adaptive behaviors across childhood. Key intervention principles include: 1) engage children and address motivation; 2) collaborate with others; 3) support real-life meaningful experiences; 4) scaffold the just-right challenge; and 5) guide children in discovering solutions.

Child engagement in daily life measure V2: validation of psychometric properties for children with cerebral palsy.

PURPOSE: Measurement development is a reiterative process requiring refinements and revalidation. The purpose of this study was to examine structural validity and reliability of the Child Engagement in Daily Life Measure (Version 2) for parents of children with cerebral palsy (CP) across a broader age span. METHODS: Participants were 1054 parents of children with CP 1.5-11 years of age. Parents completed the Child Engagement in Daily Life measure that consists of the Participation in Family and Recreational Activities domain (11 items) and the Performance of Self-care Activities domain (18 items) as part of two longitudinal studies related to outcomes for children with CP. RESULTS: Rasch analysis indicated acceptable fit of items, stable item calibration, and logical ordering of items by difficulty for both frequency of participation in family and recreational activities and performance of self-care activities. Test-retest reliability was good to excellent: ICC = 0.78 for frequency of participation, ICC = 0.68 for enjoyment of participation, and ICC = 0.97 for self-care. CONCLUSIONS: Evidence supports reliability and validity of the Child Engagement in Daily Life Measure (Version 2) for parent-report of their children's participation in family and recreational activities and performance of self-care activities for children with CP 1.5-12 years of age.IMPLICATIONS FOR REHABILITATIONParticipation in family and recreational activities and performance of self-care activities of children with cerebral palsy can be assessed using the concise parent-report Child Engagement in Daily Life Measure V2.Knowledge of the continuum of difficulty of the frequency of participation in family and recreational activities and performance of self-care activities can assist practitioners in progressing service plans.Practitioners are encouraged to use the measure to guide discussions with parents and children on areas to focus services to support participation in family and recreational activities and performance of self-care activities.

Regional Differences in School-Based Physical Therapy: Examination of Therapist and Student Characteristics, Service Delivery, Activities, Interventions, and Outcomes.

AimsThe aim of this study was to examine regional differences in school-based physical therapy practice focusing on the attributes of the school-based physical therapists and students; service delivery approaches, activities, and interventions; and student outcomes. Recognition of regional practices may decrease unnecessary variations, and assist with therapist clinical decision making and efforts to implement evidence-informed practice.MethodsA secondary data analysis of the PT COUNTS data was performed to compare physical therapist and student attributes; service delivery, activities, and interventions; and student outcomes across the Northeast, Southeast, Central, and Northwest regions of the United States.ResultsDifferences in the physical therapist and student characteristics, service delivery, activities, and interventions existed across the regions. There were no regional differences in outcomes when controlling for student functional level.ConclusionRegional differences in school-based practices may be expected and indicative of the influence of contextual factors including state and local policies and procedures that shape school-based service delivery and the characteristics of the therapists and students. Regional differences in practices may not have been of sufficient clinical magnitude to alter outcomes. Physical therapists can use the findings to reflect upon their individual decision making and practices.

Collaborative Goal-Setting Beliefs and Practices of Out-Patient Pediatric Physical Therapists Working in Saudi Arabia and the United States.

AIMS: (1) identify and compare family-centered care (FCC) and collaborative goal-setting (CGS) beliefs and practices of out-patient pediatric physical therapists (PTs) in Saudi Arabia (SA) and the United States (US); (2) describe CGS approaches; and (3) determine the association between CGS practices and educational level, clinical experience, and FCC beliefs and practices. METHODS: 87 PTs completed an online survey. RESULTS: Ninety percent of PTs believed in FCC to a great extent. PTs in the US rated their organization's family-centeredness and their own FCC application significantly higher than PTs in SA. PTs believed in CGS with parents (86%) and children (66%) to a great extent while 69% of PTs reported applying CGS with parents to a great extent compared to 39% with children. PTs in SA rated the importance of determining therapy goals by PTs significantly higher than PTs in the US. The most selected CGS strategy was asking about concerns and needs. Low to moderate significant positive associations were found between CGS practices and PTs belief of their organization's family-centeredness and their own FCC application. CONCLUSION: Similarities and differences were found between the two countries in FCC and CGS beliefs and practices. Organizational and individual FCC practices influence CGS practices.

Co-constructing engagement in pediatric rehabilitation: a multiple case study approach.

PURPOSE: To explore engagement principles and contextual conditions in high-engagement therapy sessions involving youth with disabilities and service providers. METHOD: From a larger project on therapy engagement, a dyadic case analysis was conducted involving three youth ages 8-15 with disabilities and their service providers. Participants were interviewed about their engagement experiences after high-engagement sessions focusing on speech articulation, transition goals, and physical mobility. Data were analyzed thematically, with an emphasis on engagement principles illustrated by the cases. RESULTS: There were four service provider engagement principles: (a) clients differ in what engages them and in how they display engagement (Individual Variation Principle), (b) there are multiple ways to engage clients (Personalizing Principle), (c) engagement is cultivated through relationship (Relationship Principle), and (d) it is important to monitor and be attuned to the client's level of engagement over a session (Monitoring Principle). Service providers' use of engagement strategies varied due to contextual conditions, including therapy type and youths' interests and preferences. CONCLUSIONS: The findings indicate the value of providers' awareness of the dynamics of engagement, their use of personalized strategies to engage clients, and the fundamental importance of cultivating a good relationship and monitoring client engagement during therapy.IMPLICATIONS FOR REHABILITATIONService providers may benefit from being aware of common principles underlying the co-construction of engagement between service providers and clients.Service providers can use a variety of personalized strategies to heighten client engagement, and can work to cultivate a positive relationship.It is important to monitor clients' non-verbal and verbal signs of engagement and respond to signs of disengagement during therapy.Contextual conditions affecting service providers' use of engagement strategies include the nature of the therapy being provided and youths' interests and preferences.

A measure of parent engagement: plan appropriateness, partnering, and positive outcome expectancy in pediatric rehabilitation sessions.

PURPOSE: To examine the psychometric properties of a parent-report measure of engagement in pediatric rehabilitation. METHOD: 113 parents (of children 4 months to 18 years, varying in diagnoses) were recruited from standard outpatient/inpatient, early intervention, and life skills programs, sampled from different sites in Canada, the US, and Australia. Parents completed the Pediatric Rehabilitation Intervention Measure of Engagement-Parent version (PRIME-P) twice, after two therapy sessions approximately two weeks apart. Analyses examined factor structure, internal consistency, and test-retest reliability, and assessed construct validity hypotheses concerning participant characteristics and contextual factors. RESULTS: The resulting 11-item PRIME-P has three factors capturing engagement in terms of Plan Appropriateness, Partnering, and Positive Outcome Expectancy. The factors displayed strong internal consistency and test-retest reliability (Partnering demonstrated slightly weaker test-retest reliability). Construct validity was shown by significant associations between the PRIME-P scales and parents' presence versus absence during the sessions, as well as service providers' years of experience. CONCLUSIONS: The PRIME-P captures parent engagement as a multifaceted construct involving appropriateness of the therapy plan, a sense of active partnership in the intervention process, and an expectation for a positive outcome. The PRIME-P has promise for research, clinical practice, and educational purposes.IMPLICATIONS FOR REHABILITATIONThe PRIME-P is a psychometrically sound tool that fills a gap in how researchers and practitioners can measure the engagement of parents in the therapy process.To enhance parent engagement, service providers can encourage collaboration in planning, foster a sense of working in partnership, and convey a sense of hope.The findings point to the need to pay attention to parents' beliefs about the therapy plan and outcomes, in addition to their behavioral involvement.The PRIME-P is a promising tool for pediatric rehabilitation that can be used to investigate the role of a crucial, yet poorly understood variable in the therapy process.

Therapists' Perceptions of Participating in a Large Research Study: Benefits, Challenges, and Impact on Practice.

Aims: Clinician participation in research is important to expand clinical research. However, there is limited understanding of the impact of such participation. The purpose of this survey-based study was to describe school-based physical therapists' perceptions of the impact, benefits, and challenges of research participation.Methods: Participants were school-based physical therapists (n = 67) who had been research personnel in a year-long study. Participants completed a questionnaire regarding their experiences participating in the study.Results: Most therapists (59%) perceived that participating in the study improved their competency as a school-based PT a small extent. Participation impacted some therapists a moderate to a great extent in their student assessments (43%), decision-making (28%), and team collaboration (25%). Almost all therapists (96%) responded that they would participate in research again. Researchers identified three themes regarding benefits of participating in research: 1) research and promoting the growth of the profession, 2) support for and expansion of my school-based practice, and 3) reflective practitioner. Researchers identified four themes regarding challenges of participating in research: 1) administrative aspects; 2) time; 3) training; and 4) implementing the tools.Conclusions: Findings from this study support therapist participation in research, and have implications for clinicians, supervisors, and researchers.

Participation-Based Student Goals in School-Based Physical Therapy Practice: Influence on Service Delivery and Outcomes.

Aims: Legislation, perspectives, and guidelines support the use of goals that address student participation in school. The purpose of this study was to determine if students with participation-based goals receive school-based physical therapy services differently and demonstrate better outcomes than students with non-participation-based goals.Methods: Secondary data analysis. School-based physical therapists (n = 109) provided services to students (n = 294) over 20 weeks. The physical therapists determined a primary goal for each student and classified this goal based on if it was (n = 181) or was not (n = 113) performed and measured within a school activity or routine (participation-based versus non-participation-based). The physical therapists documented the proportion of services provided within a school activity, on behalf of the student, and consisting of activity-focused functional activities. They also measured goal attainment and assessed participation via the School Function Assessment at the beginning and end of the study.Results: Students with participation-based goals received a significantly greater proportion of services within a school activity than those with non-participation-based goals (p < 0.001). There was no significant difference for the remaining service variables, nor for the outcome variables.Conclusions: Use of participation-based goals may promote school-based physical therapy service delivery within a school activity, thus supporting best practice.

Cross-cultural adaptation of the Arabic version of Self-Care Domain of Child Engagement in Daily Life and Ease of Caregiving for Children measures.

PURPOSE: To cross-culturally adapt the Self-Care Domain of Child Engagement in Daily Life and the Ease of Caregiving for Children to Arabic language and Saudi culture and to examine the reliability of the Arabic version of both measures. METHODS: A modified cross-cultural adaptation procedure was employed. A total 36 children with cerebral palsy (aged 1.5-11 years) and their parents participated in the pilot and final testing steps. A committee of 7 stakeholders evaluated cross-cultural equivalence of both measures. Cronbach's alpha, intra-class correlation coefficient, and minimal detectable change were used to establish internal consistency, test-retest reliability, and distribution-based index, respectively. RESULTS: Minor linguistic, not cultural, adaptations were made in the Arabic version of both measures. Conceptual, item, semantic, and operational types of equivalences were supported. The Arabic version of Self-Care Domain of Child Engagement in Daily Life and Ease of Caregiving for Children demonstrated high internal consistency (0.97 and 0.91, respectively), excellent test-retest reliability (0.99 and 0.96, respectively), and appropriate minimal detectable change values (0.29, 0.43, respectively). CONCLUSIONS: The Arabic version of Self-Care Domain of Child Engagement in Daily Life and Ease of Caregiving for Children are reliable and culturally appropriate for use with parents of children with cerebral palsy in Saudi Arabia.

The complexities and synergies of engagement: an ethnographic study of engagement in outpatient pediatric rehabilitation sessions.

PURPOSE: To investigate client (youth/caregiver) and service provider engagement in outpatient pediatric rehabilitation therapy sessions. METHODS: In an ethnographic study, five research assistants attended 28 outpatient sessions, mostly delivered by occupational, physical, and speech-language therapists, and rated signs of client, provider, and relational engagement using the Pediatric Rehabilitation Intervention Measure of Engagement - Observation version. Post-session interviews were conducted individually with 13 youth, 15 caregivers, and 26 providers. RESULTS: Overall, there was a moderate to great extent of engagement. Provider engagement was rated as higher than client engagement, particularly in sessions with activities focusing on body structure/function. The interviews indicated associations among engagement-related constructs: (a) expectations influenced engagement/disengagement and therapy progress, (b) engagement was associated with positive affect and relationships, and (c) engagement was strongly associated with relationships and collaboration. CONCLUSIONS: Engagement is a central process within a complex system of psychosocial constructs operating in therapy. Engagement is emergent, synergistic, and change-inducing - it emanates from, involves, and influences multiple aspects of therapy. Notably, engagement ties two pivotal elements - positive expectations and positive affect - to positive relationships, collaboration, and therapy progress. Implications for practice include an understanding of how providers manage the therapeutic context and work to foster engagement.Implications for rehabilitationEngagement, and its various elements, plays a central role in shaping how clients, parents, and clinicians value therapeutic encounters.Optimal therapy is often thought to include engagement, relationships, and collaboration; the importance of therapy expectations, positive affect, and perceptions of progress are frequently overlooked.Engagement and motivation may be maximized when youth and caregivers are asked explicitly about how they view their engagement in therapy.In addition to clarifying and aligning expectations with youth and caregivers, service providers can enhance engagement and motivation by intentionally creating enjoyable and meaningful interactions, developing relationships, negotiating consensus on goals and plans, and demonstrating therapy progress.Service providers can harness engagement and the system of related constructs by listening and communicating effectively, by entering the world of the client and family, and by being aware of, anticipating, and responding to engagement and disengagement.

Longitudinal Trajectories and Reference Percentiles for Participation in Family and Recreational Activities of Children with Cerebral Palsy.

AIM: To create longitudinal trajectories and reference percentiles for frequency of participation in family and recreational activities for children with cerebral palsy (CP) by Gross Motor Function Classification System (GMFCS) level. METHODS: 708 children with CP 18-months to 12-years of age and their families participated in two to five assessments using the GMFCS and Child Engagement in Daily Life Measure. Data were analyzed using mixed-effects models and quantile regression. RESULTS: Longitudinal trajectories depict the relatively stable level of frequency of participation with considerable individual variability. Average change in the frequency of participation scores of children from 2-12 years of age by GMFCS level varied from 3.7 (GMFCS level I) to - 9.0 points (GMFCS level V). A system to interpret the magnitude of change in percentiles over time is presented. CONCLUSIONS: Longitudinal trajectories and reference percentiles can inform therapists and families for collaboratively designing services and monitoring performance to support children's participation in family and recreational activities.

A Stepped Care Model of Patient Navigation to Enhance Engagement with Perinatal Mental Health Care.

During the perinatal period, women are at increased risk for developing perinatal mood and anxiety disorders (PMADs). As perinatal mental health screening efforts increase, significantly more women will be identified who require mental health services. Evidence-based treatments exist, yet many women do not receive adequate care. Patient navigation (PN) offers a promising patient-centered approach to improve treatment attendance and engagement. The purpose of this study is to describe the development of a stepped care PN service at an intensive outpatient program for women with PMADs. Our experience incorporating this model of PN revealed significant features that may guide other treatment care facilities to adopt this service to increase identification and connection to care.

Building blocks of resiliency: a transactional framework to guide research, service design, and practice in pediatric rehabilitation.

Purpose: Children's resiliency is seen as important in pediatric rehabilitation, but is seldom the focus of research or intervention. This article presents a resiliency framework to inform pediatric rehabilitation research, service design, and practice.Methods: The development of the framework was guided by a transactional, life course perspective, and a review of self-constructs in the resiliency literature.Results: The framework comprises health-related adversities, self-capacities, self-regulatory processes, and adaptive benefits. Four adaptive self-capacities are highlighted (activity self-efficacy, capacity to marshal resources and supports to achieve goals, capacity to adapt to changing life situations, and capacity to envision a positive future). These self-capacities are linked to common adversities experienced by children with disabilities, namely activity limitations, functioning and participation restrictions, transition issues, and anticipated future life challenges. The self-capacities are also associated with empowered, optimistic, adaptive, and hopeful mindsets, which influence accommodative and assimilative self-regulatory strategies affecting children's adaptive benefits.Conclusions: The framework can inform resiliency-related research exploring self-capacities and resiliency processes. The framework points to what is modifiable through intervention targeting the person-in-context, namely self-capacities, mindsets, and situated experiences. Implications for service design and delivery include providing opportunities and interacting with clients in ways that support the development of these self-capacities.Implications for rehabilitationFostering resiliency means preparing children with disabilities to negotiate and navigate the adversities and challenges they will encounter over their lives.Important resiliency-related self-capacities include activity self-efficacy, capacity to marshal resources and supports to achieve goals, capacity to adapt to changing life situations, and capacity to envision a positive future.The resiliency framework suggests the importance of enhancing children's views of themselves as empowered, optimistic, adaptive, and hopeful.Practice will be enriched by acknowledging that a range of health concerns are relevant to practice, including issues of impairment, functioning, participation, and adaptation.

Ease of Caregiving for Children: Re-Validation of Psychometric Properties of the Measure for Children with Cerebral Palsy up to 11 Years of Age.

Purpose: To re-validate stability and hierarchal ordering of items, test-retest reliability, and construct validity of the Ease of Caregiving for Children measure for parents of children with cerebral palsy (CP) up to 11 years of age.Methods: Participants were 613 parents of children with CP between 1.5 and 11 years of age. Parents completed Ease of Caregiving for Children and both parents and therapists classified children's levels of gross motor, manual and communication functions.Results: Rasch analysis indicated acceptable fit of items, stable item calibration, and logical ordering of items by difficulty. Test-retest reliability was good: ICC = 0.69 (95% CI 0.52-0.81). For construct validity, ease of caregiving was higher for parents of children with higher functioning compared to parents of children with lower functioning, p < .001.Conclusions: Ease of Caregiving for Children is a unidimensional, reliable and valid measure of physical caregiving for parents of children with CP 1.5-11 years.

Longitudinal Changes in Physical Caregiving for Parents of Children with Cerebral Palsy.

Aims: To determine changes in physical caregiving for parents of children with cerebral palsy (CP) over a two-year period based on children's gross motor function level and age.Methods: 153 parents of children with CP rated their physical caregiving using the Ease of Caregiving for Children three times over two years. Parents and assessors classified children's gross motor function using the Gross Motor Function Classification System (GMFCS). Physical caregiving was compared at three test times among parents of children grouped by GMFCS level (I, II-III, and IV-V) and age (1.7-5.9 and 6-11 years) using a three-way mixed ANOVA.Results: Among all analyses, a two-way interaction was found between children's GMFCS level and test time on ease of caregiving, p < 0.01. Change over two-year period was found for parents of children in level I and II-III, p < 0.01, but not parents of children in levels IV-V. At each test time, parents of children in level I reported the greatest ease of caregiving followed by parents of children in levels II-III, and levels IV-V, who reported the lowest ease of caregiving, p < 0.001.Conclusions: Findings support evaluation and monitoring of physical caregiving for parents of children with CP over time.

Self-Care Trajectories and Reference Percentiles for Children with Cerebral Palsy.

Aims: To create longitudinal trajectories and reference percentiles for performance in self-care of children with cerebral palsy (CP).Methods: Participants were 708 children with CP, 18 months through 11 years of age and their parents residing in 10 regions across Canada and the United States. Gross Motor Function Classification System (GMFCS) levels were determined by consensus between parents and therapists. Parents' completed the Performance in Self-Care domain of the Child Engagement in Daily Life Measure two to five times at 6-month intervals. Nonlinear mixed-effects models were used to create longitudinal trajectories. Quantile regression was used to construct cross-sectional reference percentiles.Results: The trajectories for children in levels I, II, and III are characterized by an average maximum score between 79.6 (level I) and 62.8 (level III) and an average attainment of 90% of the maximum score between 7 and 9 years of age. The trajectories for children in level IV and V show minimal change over time. Extreme variation in performance among children of the same age and GMFCS level complicate interpretation of percentile change of individual children.Conclusion: The findings are useful for monitoring self-care of children with CP and evaluating change for children in GMFCS levels I-III.