Pediatric Rehabilitation Services Research Articles

EPIC-CP pilot trial study protocol: a multicentre, randomised controlled trial investigating the feasibility and acceptability of social prescribing for Australian children with cerebral palsy

IntroductionThe social determinants of health contribute to poorer health outcomes for children with cerebral palsy (CP) and are barriers to families accessing health services. At an individual level, social determinants...

Characteristics of children with autism spectrum disorder in pediatric rehabilitation at a referral hospital in Peru.

Motivation for the study. Despite the prevalence of ASD, research in the field of Physical Medicine and Rehabilitation is scarce in Peru. Main findings. Of 120 children with a previous diagnosis of ASD, only 9.8% received inclusive education. The median age at diagnosis was 3.83 years. We also found that 78.4% had no disability certificate and 77.5% had incomplete psychological evaluation. The median time since the last physical, occupational, and speech therapy sessions was 3 months, 8 months, and 3.5 months, respectively. Implications. These findings highlight the need to enhance early diagnosis, inclusive education, and evaluation and subsequent certification of disability, as well as to establish more timely interventions. Autism spectrum disorder (ASD) is characterized by developmental disorders, difficulties in social interaction and communication, and restrictive and repetitive patterns of behavior. Despite its high prevalence, few studies have been conducted in rehabilitation settings. This study aimed to describe the characteristics of children with ASD from the Pediatric Rehabilitation Service of the Rebagliati Hospital (SRP-HNERM). Cross-sectional descriptive study. We reviewed the medical records of children under 14 years of age previously diagnosed with ASD from the SRP-HNERM during 2022. A total of 120 children with ASD were evaluated. The median age was 5 years. Most received regular education, but it was inclusive only for 9.8%. The mean age at diagnosis was 3.83 years. We found that 78.4% had no disability certificate and 77.5% of the participants had incomplete psychological evaluation. The median time since the last physical, occupational and speech therapy sessions was 3, 8 and 3.5 months respectively. The mean age at diagnosis of ASD was older than three years, and more than 75% of the patients had neither a disability certificate nor a complete psychological evaluation. The median time since the last rehabilitation therapy sessions was three months or more. Our findings highlight the need to improve early diagnosis, inclusive education and evaluation and subsequent certification of disability, as well as to establish timely interventions.

Factors Influencing Recovery From Pediatric Stroke Based on Discussions From a UK-Based Online Stroke Community: Qualitative Thematic Study.

The incidence of stroke in children is low, and pediatric stroke rehabilitation services are less developed than adult ones. Survivors of pediatric stroke have a long poststroke life expectancy and therefore have the potential to experience impairments from their stroke for many years. However, there are relatively few studies characterizing these impairments and what factors facilitate or counteract recovery. This study aims to characterize the main barriers to and facilitators of recovery from pediatric stroke. A secondary aim was to explore whether these factors last into adulthood, whether they change, or if new factors impacting recovery emerge in adulthood. We performed a qualitative thematic analysis based on posts from a population of participants from a UK-based online stroke community, active between 2004 and 2011. The analysis focused on users who talked about their experiences with pediatric stroke, as identified by a previous study. The posts were read by 3 authors, and factors influencing recovery from pediatric stroke were mapped into 4 areas: medical, physical, emotional, and social. Factors influencing recovery were divided into short-term and long-term factors. There were 425 posts relating to 52 survivors of pediatric stroke. Some survivors of stroke posted for themselves, while others were talked about by a third party (mostly parents; 31/35, 89% mothers). In total, 79% (41/52) of survivors of stroke were aged ≤18 years and 21% (11/52) were aged >18 years at the time of posting. Medical factors included comorbidities as a barrier to recovery. Medical interventions, such as speech and language therapy and physiotherapy, were also deemed useful. Exercise, particularly swimming, was deemed a facilitator. Among physical factors, fatigue and chronic pain could persist decades after a stroke, with both reported as a barrier to feeling fully recovered. Tiredness could worsen existing stroke-related impairments. Other long-standing impairments were memory loss, confusion, and dizziness. Among emotional factors, fear and uncertainty were short-term barriers, while positivity was a major facilitator in both short- and long-term recovery. Anxiety, grief, and behavioral problems hindered recovery. The social barriers were loneliness, exclusion, and hidden disabilities not being acknowledged by third parties. A good support network and third-party support facilitated recovery. Educational services were important in reintegrating survivors into society. Participants reported that worrying about losing financial support, such as disability allowances, and difficulties in obtaining travel insurance and driving licenses impacted recovery. The lived experience of survivors of pediatric stroke includes long-term hidden disabilities and barriers to rehabilitation. These are present in different settings, such as health care, schools, workplaces, and driving centers. Greater awareness of these issues by relevant professional groups may help ameliorate them.

Understanding factors that influence goal setting in rehabilitation for paediatric acquired brain injury: a qualitative study using the Theoretical Domains Framework.

Background While goal setting with children and their families is considered best practice during rehabilitation following acquired brain injury, its successful implementation in an interdisciplinary team is not straightforward. This paper describes the application of a theoretical framework to understand factors influencing goal setting with children and their families in a large interdisciplinary rehabilitation team. Methods A semi-structured focus group was conducted with rehabilitation clinicians and those with lived experience of paediatric acquired brain injury (ABI). The 90-min focus group was audio-recorded and transcribed verbatim. Data were thematically coded and mapped against the Theoretical Domains Framework (TDF) to understand influencing factors, which were then linked to the Capability, Opportunity, Motivation - Behaviour (COM-B) model. Results A total of 11 participants (nine paediatric rehabilitation clinicians, one parent and one young person with lived experience of paediatric ABI) participated in the focus group. Factors influencing collaborative goal setting mapped to the COM-B and six domains of the TDF: Capabilities (Skills, Knowledge, Beliefs about capabilities, and Behavioural regulation), Opportunities (Environmental context and resources), and Motivation (Social/professional role and identity). Results suggest that a multifaceted intervention is needed to enhance rehabilitation clinicians' and families' skills and knowledge of goal setting, restructure the goal communication processes, and clarify the roles clinicians play in goal setting within the interdisciplinary team. Conclusion The use of the TDF and COM-B enabled a systematic approach to understanding the factors influencing goal setting for children with acquired brain injury in a large interdisciplinary rehabilitation team, and develop a targeted, multifaceted intervention for clinical use. These represent important considerations for the improvement of collaborative goal setting in paediatric rehabilitation services to ensure that best practice approaches to goal setting are implemented effectively in clinical practice.

Development and evaluation of the Family Needs Questionnaire for Pediatric Rehabilitation.

To develop the Family Needs Questionnaire-Pediatric Rehabilitation (FNQ-PR) version and evaluate the reliability and concurrent validity of this self-report measure for caregivers of children with disabilities who receive pediatric rehabilitation services. The 39-item FNQ-PR was developed through a modified Delphi Technique. For test-retest evaluation, parents completed the FNQ-PR twice through an online REDCap survey, 1-3 weeks apart. Concurrent validity data (parent-report Impact on Family Scale [IFS-15] and Measure of Processes of Care [MPOC-20]) were collected at baseline. Reliability analyses included ICCs (95%CI) and internal consistency evaluation. Twenty-five caregivers of children ages 2-18 years (mean age 12.2 years) with a disability completed the FNQ-PR at baseline, and 21 completed the retest. FNQ-PR total score demonstrated excellent test-retest reliability (ICC = 0.84); internal consistency was high. The FNQ-PR total score was strongly negatively associated with IFS-15 total score (r = -0.62) and showed fair to strong association with MPOC subscale scores (0.45 ≤ r ≤ 0.70). Participants did not identify issues with the online format or FNQ-PR item rating. The FNQ-PR demonstrated excellent overall reliability and strong evidence of validity. It fills a gap in clinical care of families of children with disabilities, providing a systematic way for families to identify the extent to which their needs are perceived to have been met. Clinicians can use this tool to target unmet needs that are most important to families. FNQ-PR use in future research will support exploration of the impact of specific child and family factors on family needs.

Developmental delay assessment in children < 5 years of age attended in the Pediatric Rehabilitation Service of a reference hospital in Peru.

Child development is a complex biological, psychological, and emotional process. Timely screening for developmental delay allows early interventions. Therefore, this study sought to assess the frequency and characteristics of developmental delay in children < 5 years of age who attended the Pediatric Rehabilitation Service of a referral hospital in Peru. We conducted a cross-sectional study. Information was collected from medical records of children < 5 years of age who attended between April and September 2022 at the Rebagliati Hospital's Pediatric Rehabilitation Service. The REBA-PED Child Developmental Assessment Profile was used for the developmental assessment, which allows to identify the degree of delay in each area (gross motor, fine motor, hearing and language, intelligence and learning, and personal-social) and the presence of warning signs. Of 226 children who attended the service, 49.1% were between 3 and 5 years old, 57.1% were female, only 3.1% were referred for suspected developmental delay, and none had had a previous developmental assessment. Among the children evaluated, 12.4% had a simple developmental delay, 19.5% had a significant developmental delay, and 53.5% had a global developmental delay. In addition, 70.8% presented a warning sign of developmental delay. Hearing and language (86.8%) and intelligence and learning (83.5%) areas had a higher frequency of significant developmental delay. We found a high frequency of developmental delay in the children assessed, predominantly in hearing and language. Although all the children were referred, none had had a previous developmental assessment.

Codesigning a social prescribing pathway to address the social determinant of health concerns of children with cerebral palsy and their families in Australia: a protocol for a mixed-methods formative research study

IntroductionSocial determinants of health (SDH) are contributors to health inequities experienced by some children with cerebral palsy and pose barriers to families engaging with complex and fragmented healthcare systems. There...

Advancing Pediatric Oncology Rehabilitation: Survey Findings of Health Professionals' Perceptions of Barriers to Care and a Framework for Action.

To explore pediatric oncology referral practices, gather healthcare providers' perspectives of barriers to access and provision of rehabilitation service across Canada, and inform a framework for action to optimize rehabilitation care and inform future research. A cross-sectional survey was conducted with Canadian healthcare professionals (HCPs) working in pediatric oncology. A total of 54 responses were received, and 34 corresponded to HCPs who refer children with cancer to rehabilitation services. Results suggest that approximately 25% of children are referred to rehabilitation services, primarily when the child presents with, or is at risk of, significant functional disability due to surgery. A primary barrier to service provision identified across HCPs included a lack of funding and resources. Medical professionals further identified a lack of specialized pediatric oncology rehabilitation services, whereas rehabilitation professionals identified the lack of pediatric oncology specific space and equipment. Identified themes from open-ended survey questions include the need for (1) dedicated funding and resources, (2) improved access, and (3) the need for specialized pediatric oncology rehabilitation services. Several barriers exist in the Canadian healthcare context that impact the delivery of rehabilitation services for children with cancer. We propose a framework for action to advance clinical care and guide future research.

Family-centred service in paediatric acquired brain injury rehabilitation: Bridging the gaps.

Children and adolescents who sustain an acquired brain injury (ABI) can experience acute and ongoing difficulties in a range of cognitive and functional domains, and their families often experience significant life changes and challenges. Family-centred service is therefore considered best practice in paediatric ABI rehabilitation. Despite widespread acceptance of family-centred service in this context, recent literature indicates that family needs are often unrecognised and unmet following paediatric ABI. Although family-centred service was introduced in the field of developmental disability over five decades ago, there remains a lack of clarity about how this approach is implemented in practice. Additionally, limited literature has discussed the implementation of family-centred service in paediatric ABI rehabilitation despite key differences between ABI and developmental disability, including nature and timing of onset, rehabilitation foci, and impacts on families. In this review, we aim to: (i) outline common sequelae of paediatric ABI with a focus on family outcomes; (ii) summarise paediatric rehabilitation and highlight opportunities for family support and involvement; (iii) discuss and synthesise literature across paediatric ABI rehabilitation and family-centred service to highlight gaps in knowledge and practice; and (v) identify clinical implications and future research directions. There is a clear need for greater clarity and consensus regarding the implementation of family-centred service in paediatric ABI rehabilitation. This review highlights the importance of providing professional development opportunities for clinicians to increase competency in practising in a family-centred manner, and opportunities to actively involve, empower and support families within rehabilitation. This review also emphasises the importance of services implementing relevant supports to address family needs where possible and developing clear referral pathways so that families can access further support elsewhere when needed.

Training Intervention and Program of Support for Fostering the Adoption of Family-Centered Telehealth in Pediatric Rehabilitation: Protocol for a Multimethod, Prospective, Hybrid Type 3 Implementation-Effectiveness Study.

Children with disability face long wait times for rehabilitation services. Before the COVID-19 pandemic, telehealth adoption was low across pediatric rehabilitation. Owing to the COVID-19 pandemic restrictions, pediatric therapists were asked to rapidly shift to telehealth, often with minimal training. To facilitate the behavior changes necessary for telehealth adoption, provision of appropriate evidence-based training and support is required. However, evidence to support the effective implementation of such training is lacking. The successful real-world implementation of a training intervention and program of support (TIPS) targeting pediatric therapists to enhance the adoption of family-centered telerehabilitation (FCT) requires the evaluation of both implementation and effectiveness. This study aimed to evaluate TIPS implementation in different pediatric rehabilitation settings and assess TIPS effectiveness, as it relates to therapists' adoption, service wait times, families' perception of service quality, and costs. This 4-year, pan-Canadian study involves managers, pediatric occupational therapists, physiotherapists, speech-language pathologists, and families from 20 sites in 8 provincial jurisdictions. It will use a multimethod, prospective, hybrid type 3 implementation-effectiveness design. An interrupted time series will assess TIPS implementation. TIPS will comprise a 1-month training intervention with self-paced learning modules and a webinar, followed by an 11-month support program, including monthly site meetings and access to a virtual community of practice. Longitudinal mixed modeling will be used to analyze indicators of therapists' adoption of and fidelity to FCT collected at 10 time points. To identify barriers and facilitators to adoption and fidelity, qualitative data will be collected during implementation and analyzed using a deductive-inductive thematic approach. To evaluate effectiveness, a quasi-experimental pretest-posttest design will use questionnaires to evaluate TIPS effectiveness at service, therapist, and family levels. Generalized linear mixed effects models will be used in data analysis. Manager, therapist, and family interviews will be conducted after implementation and analyzed using reflective thematic analysis. Finally, cost data will be gathered to calculate public system and societal costs. Ethics approval has been obtained from 2 jurisdictions (February 2022 and July 2022); approval is pending in the others. In total, 20 sites have been recruited, and data collection is anticipated to start in September 2022 and is projected to be completed by September 2024. Data analysis will occur concurrently with data collection, with results disseminated throughout the study period. This study will generate knowledge about the effectiveness of TIPS targeting pediatric therapists to enhance FCT adoption in pediatric rehabilitation settings, identify facilitators for and barriers to adoption, and document the impact of telehealth adoption on therapists, services, and families. The study knowledge gained will refine the training intervention, enhance intervention uptake, and support the integration of telehealth as a consistent pediatric rehabilitation service option for families of children with disabilities. ClinicalTrials.gov NCT05312827; https://clinicaltrials.gov/ct2/show/NCT05312827. PRR1-10.2196/40218.

A survey of inpatient pediatric rehabilitation practices across the United States1.

Objectives included identifying programs that provide pediatric inpatient rehabilitation services (IPRs) across the United States (US), describing differences in location, admission criteria, available resources, personnel and staffing, and populations served between pediatric rehabilitation programs with the overall goal to evaluate rehabilitation needs in geographical areas with limited access for targeted program development. Online survey emailed to pediatric physiatrists who worked or directed IPRs and completed between December 2018 to March 2019. Fifty respondents completed the survey of the seventy-one distributed. Fifty percent of pediatric inpatient rehabilitation services are within a free-standing pediatric hospital with an average of 14 beds. Twenty-eight programs provide acute services with almost half providing accredited specialized programming. All respondents reported that inpatient rehabilitation treatment teams included pediatric physiatry, nursing, social work, and core therapy disciplines. Although characteristics of pediatric inpatient rehabilitation services vary, similarities exist with respect to team composition, clinical coverage, admission or documentation criteria, and outcome measures. The geographic distribution of pediatric IPRs including available specialty programming reveals resource-limited areas. Results from this study emphasize how practice standards or fiscal limitations impact program structure, resources, and ultimately short- and long-term healthcare outcomes among the population of pediatric rehabilitation patients.

Pediatric rehabilitation services during COVID-19 pandemic in the United Arab Emirates

Introduction/Objective. COVID-19 pandemic has changed the rehabilitation practice across the globe. A sudden transition from in-person therapy at the center to remote therapy challenged the managers and multi-disciplinary team members providing pediatric rehabilitation. The main objective of this research was to assess the provision of services for children with disabilities during COVID-19 in the United Arab Emirates. Methods. Two surveys were developed by the research team, one for the managers and the others for multidisciplinary team members. Both surveys were validated through experts followed by a pilot study. The final versions of the survey were sent to all the pediatric rehabilitation centers within the United Arab Emirates in September 2020. A total of 44 managers and 434 multidisciplinary team members completed the survey. Results. The accessibility of the pediatric rehabilitation services was reported to be very high with 77%. Regarding the cost for running the services, almost half (46%) of managers reported them to be costlier than normal. Telerehabilitation was the most common approach utilized with synchronized live video calls (86%), YouTube video clips (88%), and created own videos (65%). Conclusion. Telerehabilitation appeared to be the most efficient model used for pediatric rehabilitation during the pandemic. The future investments for the continued use of telerehabilitation require planning, budgeting, investing, and creating supportive environments for parents, children, and multidisciplinary team members. There is a need for sharing platforms for educational and therapeutic resources created during the pandemic, with ongoing research on telerehabilitation.

A Systematic Review to Identify Screening Tools and Practices that Can Be Used by Children’s Rehabilitation Service Providers to Screen Parents’ Mental Health

ABSTRACT Background Parents of children with disabilities often report stress, depression, and anxiety. This review identified screening tools and practices that pediatric rehabilitation service providers can use to screen the mental health of parents of children with disabilities Methods An interdisciplinary team and patient partner completed the systematic review in which 16,015 articles were screened and 473 articles were included to i) identify mental health tools that were used with parents, ii) determine the clinical utility of frequently used tools, iii) examine the screening practices used in pediatric rehabilitation contexts Results 115 screening tools were used to screen parents’ mental health. The Parenting Stress Index was used most often. Seven studies reported screening in order to recommend further assessment or supports. Increased awareness, training, resources, and infrastructure are needed to support parents’ mental health Discussion Evidence is needed to guide mental health screening practices in pediatric rehabilitation and determine their effectiveness.

Parents' Perceptions of the Value of Children's Participation in Pediatric Rehabilitation Services: A Phenomenographic Study.

Ensuring that children have opportunities to be involved in decision-making regarding their own care is associated with quality improvement in pediatric rehabilitation. The aim of the study was to explore parents’ perceptions of the value of children’s participation in pediatric rehabilitation services. Semi-structured interviews were conducted with 17 parents of children with disabilities who visited pediatric rehabilitation services. A phenomenographic analysis method was used. Three categories developed from the analysis describing how participation generated value in terms of empowerment, self-awareness, and independence. The outcome space describes a hierarchical relationship between the categories and their influence on each other. Independence achieved through participation was a core aspect and is at the highest level in the hierarchy since it includes and depends on the outcomes from both empowerment and self-awareness. Parents’ perceptions of the value of children’s participation in pediatric rehabilitation services include the possibility for the child to use their entire capacity through values created in terms of empowerment, self-awareness, and independence, in order to live the best life possible. Children with disabilities are diverse as a group, and further research to identify barriers and facilitators of participation is needed to adjust interventions within pediatric rehabilitation services to ensure that children with disabilities can be increasingly empowered, self-aware, and independent.

Integrating lived experience into clinical practice: a case study of young peer providers in pediatric rehabilitation

Purpose Youth Facilitators (YFs) are peer service providers (SPs) with childhood-onset disabilities working in pediatric rehabilitation teams. This study explored the YF role focusing on what work YFs do, the perceived facilitators and challenges pertinent to the role integration process, and the evolution of the role over the study period. Methods A longitudinal, qualitative case study approach was used to gather data over a total period of 14 months through interviews, focus groups, workload logs, and observations. Data were analyzed using the method of thematic analysis. Results Two YFs, 23 SPs and two managers participated in the study. YFs’ work included independent consultation, resource provision, referral making, and program co-facilitation. Analysis produced two contrasting themes. When viewed as a representative of clients, YFs were considered bringing client perspectives to care, adding credibility to clinical services, and empowering clients and families through role modeling. However, when viewed as a professional SP, their expertise was questioned due to role unclarity, limited generalizability of lived experience, and organizational limitations. Conclusions Training tailored to local care contexts and organizational supports are needed to transform YFs’ experiential knowledge into experiential expertise. We propose strategies for optimal integration of peer providers into clinical care teams. Implications for rehabilitation As peer service providers with lived experience of disabilities, Youth Facilitators (YFs) have the potential to benefit pediatric rehabilitation services by facilitating empowerment in clients and families as they navigate through life transitions. The YF scope of practice and training should be adapted to fit with individual clinical teams and local care contexts to help YFs establish their experiential expertise in interdisciplinary teams. Establishing YF’s core competencies (e.g., advocacy, coaching, and boundary setting skills) can help transform their experiential knowledge into experiential expertise.

Patient Satisfaction Utilizing Telehealth for Pediatric Physical and Occupational Therapy During COVID-19

Research ObjectivesTo present the results from a patient satisfaction survey and compare patient satisfaction with in-person to telehealth delivery of pediatric physical and occupational therapy.DesignRetrospective cohort study.SettingOutpatient pediatric rehabilitation services from a specialized New York City hospital.ParticipantsAll pediatric patients, 1 month to 21 years old, receiving outpatient rehabilitation services from this hospital were sent a Q-Review survey to rate level of satisfaction with the care received. Pediatric patients, 1 month to 21 years old, who received outpatient physical and/or occupational therapy and completed the survey were included. 173 survey responses were included.InterventionsDuring COVID-19 pediatric rehabilitation rapidly shifted from in-person to telehealth sessions.Main Outcome MeasuresA retrospective review of survey data from April 2 to December 16, 2019 for 2 types of visits: in-person initial evaluation, in-person follow up and from April 2 to December 16, 2020 for 2 types of visits: telehealth initial evaluation, and telehealth follow up. Items were scored on a Likert scale 1-5. A score of 5 indicates "most satisfied" and 1 indicates "least satisfied." One exception was the net promoter score question, "How likely are you to refer this hospital to your friends and family?" was graded on a 10 point scale. Responders comments were collected and reviewed. Since this was a pediatric population, the parent often responded to the survey.ResultsA total sample of 173 survey responses for pediatric physical and occupational therapy were included. Survey collection was as follows: 46 in-person evaluation surveys, 17 telehealth evaluation surveys, 29 in-person follow up surveys, and 81 telehealth follow-up surveys. 139 surveys were for physical therapy and 34 for occupational therapy. Mean responses for in-person evaluations ranged from 4.3 - 4.8 and 4.6 - 5.0 for telehealth evaluations, indicating a trend in higher satisfaction levels with telehealth evaluations. For in-person follow ups, the mean responses ranged from 4.9 - 5.0 and 4.9 - 5.0 for telehealth follow ups showing comparable satisfaction levels.ConclusionsTelehealth can be effective to provide pediatric physical and occupational therapy while maintaining a high level of patient and parent satisfaction.Author(s) DisclosuresNone.

Exploring Barriers to Participation in Pediatric Rehabilitation: Voices of Children and Young People with Disabilities, Parents, and Professionals.

In order to develop suitable support for participation in pediatric rehabilitation, it is important to understand what barriers need to be bridged from the perspectives of both children and adults. The aim of this study was to explore barriers to participation in pediatric rehabilitation services, according to children and young people with disabilities, parents to children with disabilities, and professionals. Data was collected in individual interviews (n = 48) and focus groups (n = 8), which were analyzed with qualitative content analysis to extract barriers to participation. Identified barriers include three categories: (1) insufficient access (controlling adults, adult-centered healthcare); (2) insufficient trust (low level of trust in adults, low level of trust in children, low self-confidence in children); and (3) insufficient involvement (norms of non-participation, low level of commitment in children). The participant groups had divergent conceptions of where and how barriers originate, and for what situations child participation is appropriate. Adult-centered healthcare and parental presence were described as barriers by all participant groups. Understanding differences in the perceptions of barriers and their origins is crucial when striving to change norms of non-participation. The findings can inform the development of new support tools and participatory formats in pediatric rehabilitation.

Bridging Pediatric and Adult Rehabilitation Services for Young Adults With Childhood-Onset Disabilities: Evaluation of the LIFEspan Model of Transitional Care.

Background: LIFEspan (“Living Independently and Fully Engaged”) is a linked transition service model for youth and young adults with childhood-onset disabilities offered via an inter-agency partnership between two rehabilitation hospitals (one pediatric and one adult) in Toronto, Canada.Objective: The objective was to evaluate healthcare outcomes (continuity of care and healthcare utilization) for clients enrolled in LIFEspan.Methods: A prospective, longitudinal, observational mixed-method study design was used. The intervention group comprised youth with Acquired Brain Injury (ABI) and Cerebral Palsy (CP) enrolled in LIFEspan. A prospective comparison group comprised youth with Spina Bifida (SB) who received standard care. A retrospective comparison group comprised historical, disability-matched clients (with ABI and CP) discharged prior to model introduction. Medical charts were audited to determine continuity of care, i.e., whether study participants had at least one visit to an adult provider within 1 year post-discharge from the pediatric hospital. Secondary outcomes related to healthcare utilization were obtained from population-based, health service administrative datasets. Data were collected over a 3-year period: 2 years pre and 1 year post pediatric discharge. Rates were estimated per person-year. Fisher's Exact Test was used to examine differences between groups on the primary outcome, while repeated measures GEE Poisson regression was used to estimate rate ratios (post vs. pre) with 95% confidence intervals for the secondary outcomes.Results: Prospective enrolment comprised 30 ABI, 48 CP, and 21 SB participants. Retrospective enrolment comprised 15 ABI and 18 CP participants. LIFEspan participants demonstrated significantly greater continuity of care (45% had engagement with adult services in the year following discharge at 18 years), compared to the prospective SB group (14%). Healthcare utilization data were inconsistent with no significant changes in frequency of physician office visits, emergency department visits, or hospitalizations for clients enrolled in LIFEspan in the year following discharge, compared to the 2 years prior to discharge.Conclusion: Introduction of the LIFEspan model increased continuity of care, with successful transfer from pediatric to adult services for clients enrolled. Data on longer-term follow-up are recommended for greater understanding of the degree of adult engagement and influence of LIFEspan on healthcare utilization following transfer.

Professionals' motivation to support parental self-management regarding children with physical disability in Dutch rehabilitation services: 'Please mind your gap'.

BackgroundProfessionals in child healthcare increasingly endorse the support of self‐management in paediatric rehabilitation services for children with physical disability. Less understood though are their views regarding the role of the children's parents, as well as their own role in supporting parents. This study aimed to investigate the motivation of rehabilitation professionals to support self‐management of parents regarding their child with physical disability, professionals' beliefs about parental self‐management, and the perceptions underlying their motivation.MethodsA mixed‐methods strategy was followed using a survey among rehabilitation professionals (n = 175) and consecutive semi‐structured interviews (n = 16). Associations between autonomous (intrinsic) versus controlled (extrinsic) motivation and beliefs on parental self‐management were tested. For deeper understanding of their motivation, directed content analysis was used to address key themes in the qualitative data extracts.ResultsProfessionals reported autonomous motivation for parental self‐management support more often than controlled motivation (t[174] = 29.95, p < .001). Autonomous motivation was associated with the beliefs about the importance of parental self‐management (r = .29, p < .001). Approximately 90% of the professionals believed that parents should have an active role, though less than 10% considered it important that parents also are independent actors and initiative takers in the rehabilitation process. Interviews revealed that individual professionals struggled with striking a balance between keeping control and ‘giving away responsibility’ to parents. A ‘professional‐like’ attitude was expected of parents with ‘involvement’ and ‘commitment’ as essential preconditions. Furthermore, professionals expressed the need for additional coaching skills to support parental self‐management.ConclusionProfessionals were predominantly autonomously motivated to support self‐management of parents. However, the dilemmas in giving or taking responsibilities within the partnership with parents may limit their effectiveness in empowering parents. Reflection on the potential gaps between professionals' motivation, beliefs and actual behaviour might be crucial to support parental self‐management.

Telemedicine in the Coronavirus Disease 2019 Pandemic: A Pediatric Rehabilitation Perspective.

In the spring of 2020, coronavirus disease 2019 evolved into a worldwide pandemic, forcing traditional face-to-face healthcare to a standstill. Telemedicine was quickly adopted as a major tool for pediatric rehabilitation services. This article describes the national legislative response of the United States to the coronavirus disease 2019 pandemic and the opportunities and challenges of implementing telemedicine in pediatric rehabilitation outpatient settings, consultations, as well as physician and patient education. The feasibility of performing a remote pediatric musculoskeletal and neurological tele-evaluation is also discussed. Although challenges exist, telemedicine has demonstrated its potential and has proven to be a practical system. Future developments in technology and accessibility, in addition to support from government and third-party payers, have the potential to make telemedicine an effective and vital platform in a coordinated healthcare system.