Pediatric Rehabilitation Services Research Articles

Exploration of Parental and Therapists' Perceptions for the Family-centeredness of Pediatric Rehabilitation Services

Exploration of Parental and Therapists' Perceptions for the Family-centeredness of Pediatric Rehabilitation Services

Congenital Cytomegalovirus among Children with Cerebral Palsy

To determine the proportion of children with cerebral palsy (CP) and cytomegalovirus (CMV) DNA detected retrospectively in their newborn screening cards (NBSC), to compare the proportion of children with CMV DNA in their NBSC across spastic subtypes of CP, and to compare the sex and other characteristics of children with CP and CMV detected on their NSBC with those in whom CMV DNA was not detected. Retrospective observational study. Data were extracted from patient records on children with CP (birth years 1996-2014) from 2 Australian state CP registers and state-wide paediatric rehabilitation services with consent. NBSCs were retrospectively analyzed for CMV DNA by nested polymerase chain reaction (PCR) using primers against gB. Positive samples were validated using real time PCR for CMV UL83. Of 401 children recruited, 323 (80.5%) had an available NBSC. Of these, 31 (9.6%; 95% CI, 6.8-13.3) tested positive for CMV DNA by nested PCR for CMV gB, of whom 28 (8.7%; 95% CI, 6.1-12.2) also had CMV DNA detected by real-time PCR for CMV UL83. Detection of CMV DNA was significantly associated with epilepsy, but not with clinical or epidemiologic characteristics, including sex and pattern of spasticity. CMV viremia in the newborn period, indicating congenital CMV infection, is highly prevalent among children with CP. Further research is needed to investigate the mechanisms and contribution of congenital CMV to the causal pathways to CP.

Availability, spatial accessibility, utilisation and the role of telehealth for multi-disciplinary paediatric cerebral palsy services in Queensland

Aims The purpose of this study was to understand the methods of current delivery of health care services to cerebral palsy (CP) patients in Queensland, Australia. The study also examines the current use of telehealth by clinicians and their perceptions about telehealth use. Methods Patient records during July 2013–July 2014 were accessed from the Queensland Paediatric Rehabilitation Service (QPRS) to collect information relating to the service delivery for CP patients. Analysis was carried out to examine the patient locations and travel distances using ArcMap geoprocessing software. In addition, 13 face-to-face semi structured interviews were conducted with clinicians from the QPRS and the Cerebral Palsy Health Service (CPHS) to understand the perceptions of clinicians relating to the current level of health care delivery. We also examined the clinicians’ current use of telehealth and their opinions about this method. Results Records of 329 paediatric CP patients were accessed and reviewed. The majority of patients (96%, n = 307) who attended the clinics at the Royal Children's Hospital (RCH), Brisbane, were from remote, rural or regional areas of Queensland. Only 4% of patients (n = 13) were from major cities. During 12 months, patients had attended nine outreach programmes that were conducted by the QPRS and CPHS. The study found that non-local patients were required to travel an average distance of 836 km to access QPRS and CPHS services in Brisbane. The average distance for receiving a consultation at an outreach clinic was 173 km. Clinicians perceived that access to health care services to CP patients in Queensland is inadequate. Nearly all clinicians interviewed had some experience in using telehealth. They had high satisfaction levels with the method. Conclusions Traditional methods of delivering services to CP patients do not meet their needs. Clinicians have found telehealth is a feasible and satisfactory delivery method. However, the use of telehealth is still limited.

English

The paediatric rehabilitation service in Malaysia is shifting from the traditional child-focused approach to a family-centred approach. At present, there is a lack of an evaluation tool to assess to the quality of paediatric rehabilitation services, and whether the services are in line with the principles of the family-centred service. This study was undertaken to assess validity and reliability of the Malay version of the Measure of Processes of Care 20-item (MPOC-20) questionnaire in evaluating family-centered approach in children rehabilitation services in Kuala Lumpur. The original English version of the MPOC-20 was translated into Malay language, before it was administered to 102 parents of children receiving rehabilitation service at the Occupational Therapy Unit, UKM Medical Centre. The component structure of the MPOC-20 Malay version was examined using principal component analysis with Varimax rotation to explore the factor structures after translation. Cronbach’s alpha was calculated to determine the internal consistency reliability of the factors identified in the MPOC-20 Malay version. The resultant four-factor model explained 64 % of the variance in the Malay MPOC-20 responses. All four factors were similar to the five factors described in the original MPOC-20. All the 20 items were retained, with relocation of some items into a new factor. The Malay version of the MPOC-20 showed good internal consistency with Cronbach’s alpha values ranging from 0.75 to 0.90. This study demonstrates that the Malay version of the MPOC-20 is valid and reliable, and is suitable for evaluation of the quality of child rehabilitation services in the Malaysian context. DOI : http://dx.doi.org/10.17576/JSKM-2015-1302-07

1232 Charitable fundraising by parents can deliver significant service developments rapidly. Brainbow - a model for the rapid delivery of a novel paediatric neuro-oncology rehabilitation service

1232 Charitable fundraising by parents can deliver significant service developments rapidly. Brainbow - a model for the rapid delivery of a novel paediatric neuro-oncology rehabilitation service

The lived experience of parents enabling participation of their child with a physical disability at home, at school and in the community

Purpose: The aim of this study was to provide an in-depth exploration and understanding of parents’ thoughts, feelings and concerns they experience while reflecting on their actions, challenges and needs in enabling their child’s participation at home, at school and in the community. Method: A naturalistic inquiry with thirteen Dutch parents using interpretative phenomenological analysis. Results: Analysis revealed three super-ordinate themes: “Parents’ experiences and concerns about systems, laws and regulations”, “Parents’ experiences and thoughts about physical and/or social environment” and “Parents’ experiences and feelings of finding and/or enabling an activity”. Parents’ often expressed feelings of disappointment derived from being misunderstood, from dealing with the complexity of systems, from hindrance of participation of their children by the social and the physical environment, and from the lack of leisure activities for their child. It is primarily restrictions in the physical and social environments that urge them to take actions, to experience challenges and think of needs. Conclusions: In-depth exploration and understanding of parents’ articulated matters must be shared and taken seriously by policymakers and service providers. Parents’ knowledge and experiences should be of major relevance to improve paediatric rehabilitation and other services for children with a physical disability.Implications for RehabilitationTo achieve tailored pediatric rehabilitation, involvement and needs of parents in enhancing their child’s participation ought to be acknowledged.Active use of parents’ experiences and knowledge regarding the participation of their child on different levels of decision making may improve daily services in pediatric rehabilitation.Aiming for optimal participation of a child with a physical disability at home, at school and in the community, the focus of pediatric rehabilitation needs to shift towards enabling, social and physical, environments.

The Measure of Processes of Care 20-Item (MPOC-20): Validity and Reliability of the Malay Version

The paediatric rehabilitation service in Malaysia is shifting from the traditional child-focused approach to a family-centred approach. At present, there is a lack of an evaluation tool to assess to the quality of paediatric rehabilitation services, and whether the services are in line with the principles of the family-centred service. This study was undertaken to assess validity and reliability of the Malay version of the Measure of Processes of Care 20-item (MPOC-20) questionnaire in evaluating family-centered approach in children rehabilitation services in Kuala Lumpur. The original English version of the MPOC-20 was translated into Malay language, before it was administered to 102 parents of children receiving rehabilitation service at the Occupational Therapy Unit, UKM Medical Centre. The component structure of the MPOC-20 Malay version was examined using principal component analysis with Varimax rotation to explore the factor structures after translation. Cronbach’s alpha was calculated to determine the internal consistency reliability of the factors identified in the MPOC-20 Malay version. The resultant four-factor model explained 64 % of the variance in the Malay MPOC-20 responses. All four factors were similar to the five factors described in the original MPOC-20. All the 20 items were retained, with relocation of some items into a new factor. The Malay version of the MPOC-20 showed good internal consistency with Cronbach’s alpha values ranging from 0.75 to 0.90. This study demonstrates that the Malay version of the MPOC-20 is valid and reliable, and is suitable for evaluation of the quality of child rehabilitation services in the Malaysian context. DOI : http://dx.doi.org/10.17576/JSKM-2015-1302-07

Developing authentic clinical simulations for effective listening and communication in pediatric rehabilitation service delivery

Purpose: To describe the creation and validation of six simulations concerned with effective listening and interpersonal communication in pediatric rehabilitation. Methods and findings: The simulations involved clinicians from various disciplines, were based on clinical scenarios related to client issues, and reflected core aspects of listening/communication. Each simulation had a key learning objective, thus focusing clinicians on specific listening skills. The article outlines the process used to turn written scenarios into digital video simulations, including steps taken to establish content validity and authenticity, and to establish a series of videos based on the complexity of their learning objectives, given contextual factors and associated macrocognitive processes that influence the ability to listen. A complexity rating scale was developed and used to establish a gradient of easy/simple, intermediate, and hard/complex simulations. Conclusions: The development process exemplifies an evidence-based, integrated knowledge translation approach to the teaching and learning of listening and communication skills.

The roles of effective communication and client engagement in delivering culturally sensitive care to immigrant parents of children with disabilities

Purpose: Delivering pediatric rehabilitation services to immigrant parents of children with disabilities requires the practice of culturally sensitive care. Few studies have examined the specific nature of culturally sensitive care in pediatric rehabilitation, especially the notions of effective communication and client engagement. Method: Interviews were held with 42 therapists (10 social workers, 16 occupational therapists and 16 speech language pathologists) from two locations in Canada (Toronto and Quebec City). Data were analyzed using an inductive content analysis approach. Results: Study themes included the importance and nature of effective communication and client engagement in service delivery involving immigrant parents. Participants discussed using four main types of strategies to engage immigrant parents, including understanding the family situation, building a collaborative relationship, tailoring practice to the client’s situation and ensuring parents’ understanding of therapy procedures. Conclusions: The findings illuminate the importance of effective, two-way communication in providing the mutual understanding needed by therapists to engage parents in the intervention process. The findings also richly describe the engagement strategies used by therapists. Clinical implications include recommendations for strategies for therapists to employ to engage this group of parents. Furthermore, the findings are applicable to service provision in general, as engaging families in a collaborative relationship through attention to their specific situation is a general principle of good quality, family-centered care.Implications for RehabilitationEffective communication permeates the delivery of culturally sensitive care and provides mutual understanding, which is fundamental to client engagement.The findings illuminate the nature of “partnership” by indicating the role of collaborative therapist strategies in facilitating engagement.Four main strategies facilitate effective communication and client engagement, including understanding the family situation, building a collaborative relationship, tailoring practice to the client’s situation and ensuring parents’ understanding of therapy procedures.Engaging families in a collaborative relationship through attention to their specific situation is a general principle of good quality, family-centered care.

The LIFEspan model of transitional rehabilitative care for youth with disabilities: healthcare professionals' perspectives on service delivery.

LIFEspan is a service delivery model of continuous coordinated care developed and implemented by a cross-organization partnership between a pediatric and an adult rehabilitation hospital. Previous work explored enablers and barriers to establishing the partnership service. This paper examines healthcare professionals' (HCPs') experiences of 'real world' service delivery aimed at supporting transitional rehabilitative care for youth with disabilities. This qualitative study - part of an ongoing mixed method longitudinal study - elicited HCPs' perspectives on their experiences of LIFEspan service delivery through in-depth interviews. Data were categorized into themes of service delivery activities, then interpreted from the lens of a service integration/coordination framework. Five main service delivery themes were identified: 1) addressing youth's transition readiness and capacities; 2) shifting responsibility for healthcare management from parents to youth; 3) determining services based on organizational resources; 4) linking between pediatric and adult rehabilitation services; and, 5) linking with multi-sector services. LIFEspan contributed to service delivery activities that coordinated care for youth and families and integrated inter-hospital services. However, gaps in service integration with primary care, education, social, and community services limited coordinated care to the rehabilitation sector. Recommendations are made to enhance service delivery using a systems/sector-based approach.

A path model for evaluating dosing parameters for children with cerebral palsy.

Dosing of pediatric rehabilitation services for children with cerebral palsy (CP) has been identified as a national priority. Establishing dosing parameters for pediatric physical therapy interventions is critical for informing clinical decision making, health policy, and guidelines for reimbursement. The purpose of this perspective article is to describe a path model for evaluating dosing parameters of interventions for children with CP. The model is intended for dose-related and effectiveness studies of pediatric physical therapy interventions. The premise of the model is: Intervention type (focus on body structures, activity, or the environment) acts on a child first through the family, then through the dose (frequency, intensity, time), to yield structural and behavioral changes. As a result, these changes are linked to improvements in functional independence. Community factors affect dose as well as functional independence (performance and capacity), influencing the relationships between type of intervention and intervention responses. The constructs of family characteristics; child characteristics (eg, age, level of severity, comorbidities, readiness to change, preferences); plastic changes in bone, muscle, and brain; motor skill acquisition; and community access warrant consideration from researchers who are designing intervention studies. Multiple knowledge gaps are identified, and a framework is provided for conceptualizing dosing parameters for children with CP.

Barriers and facilitators to health and social service access and utilization for immigrant parents raising a child with a physical disability

Purpose – The purpose of this paper is to examine the barriers and facilitators to health and social service access and utilization for immigrant parents raising a child with a physical disability, in order to understand their specific needs and experiences of care. Design/methodology/approach – The research involves qualitative interviews with five immigrant parents of four children with a physical disability in two cities in Ontario, Canada. Findings – The findings indicate that divergent perceptions of health care and disability, language, knowledge of service systems, and finances may create obstacles to family-centered and culturally sensitive care. Formal supports, including a third person to navigate the system and services provided in families’ homes, are facilitators that enhance the service care experiences of parents. Practical implications – Service providers need to accommodate and work with immigrant parents who have a child with a disability to overcome the barriers to their care. To enhance service experiences formal support and home services should be provided when possible. Originality/value – There is little research on immigrant families’ experiences with pediatric rehabilitation services and this study contributes to this area. This paper shows that immigrant families of children with disabilities have barriers to service access, utilization, and service care experiences that are similar to those of non-immigrant families. There are few studies on facilitators to service access and utilization and positive experiences; therefore, this study makes a contribution to this area.

Do external stimuli impact the gait of children with idiopathic toe walking? A study protocol for a within-subject randomised control trial

IntroductionFrequently, toe walking gait is the result of disease processes, trauma or neurogenic influences. Idiopathic toe walking (ITW) is, by definition, the diagnosis of a toe walking gait adopted in...

Development, Implementation, and Evaluation of the Apollo Model of Pediatric Rehabilitation Service Delivery

ABSTRACTThis article presents the experience of a rehabilitation program that undertook the challenge to reorganize its services to address accessibility issues and improve service quality. The context in which the reorganization process occurred, along with the relevant literature justifying the need for a new service delivery model, and an historical perspective on the planning; implementation; and evaluation phases of the process are described. In the planning phase, the constitution of the working committee, the data collected, and the information found in the literature are presented. Apollo, the new service delivery model, is then described along with each of its components (e.g., community, group, and individual interventions). Actions and lessons learnt during the implementation of each component are presented. We hope by sharing our experiences that we can help others make informed decisions about service reorganization to improve the quality of services provided to children with disabilities, their families, and their communities.

Did waiting times really decrease following a service reorganization? Results from a retrospective study in a pediatric rehabilitation program in Québec

Purpose: To examine changes in waiting times and types of services received before, during and after a pediatric rehabilitation service reorganization including new admission procedures; To compare waiting time data available in the program’s administrative database and children’s medical files. Method: Waiting time was defined as the time elapsed between referral and accessing a service provided by any clinician in the program (program waiting time) or by any clinician within a discipline (discipline-specific waiting time). Services were categorized as individual, group treatment, or other. ANOVAs and χ2 tests were used to examine changes in waiting times and type of services, respectively. Paired T-tests compared the program waiting times from the two databases. Results: Data were collected on 188 children (mean age: 4 years and 1 month). The program and occupational therapy waiting times were shorter following the service reorganization. For two disciplines, the proportion of children receiving individual treatment diminished over time, while group and other types of interventions increased. Program waiting times calculated using the two data sources did not differ significantly but differences in the available data highlighted administrative issues. Conclusions: Service reorganization can decrease waiting times and change the type of services offered over time.Implications for RehabilitationService reorganization can improve accessibility by reducing the first waiting times.More researches are needed to understand the impact of the changes in the type of services provided on service accessibility and service quality.Service accessibility should be monitored using accurate data extending beyond those routinely collected.

The Thickness of the Sternocleidomastoid Muscle as a Prognostic Factor for Congenital Muscular Torticollis

ObjectiveTo examine whether the thickness of the sternocleidomastoid muscle (SCM) could be used as a prognostic factor for congenital muscular torticollis (CMT).MethodThis was a retrospective study conducted in a pediatric rehabilitation service at a tertiary medical center. Fifty-two children who met the following inclusion criteria were included: 1) children who were 3 month-old or younger, 2) children diagnosed with CMT, 3) passive rotation of the face toward the shoulder of the tilted side ≤60°, 4) children who had been managed according to the clinical pathway for CMT, 5) children who had been followed up for 6 months or more after the end of treatment. The duration and total number of stretching exercise sessions were reviewed with reference to the thickness of the SCM.ResultsAmong the 52 children with CMT, 46 children were successfully managed with only stretching exercise of the SCM for 1-6 weeks (group 1: 88.5%) and 6 children were managed with botulinum toxin A injection, surgical release or both in addition to stretching exercise (group 2: 11.5%). The difference in the SCM thickness between the affected and normal sides was significantly greater in group 2 than that in group 1 (p=0.026). A strong correlation was found between the total duration of stretching exercise and the difference in the SCM thickness in group 1 (Pearson' γ=0.429; p=0.003).ConclusionChildren with a thicker SCM seem to require a longer duration of stretching exercise and other therapeutic interventions in addition to stretching exercise for CMT. Therefore, the thickness of the SCM may be one prognostic factor for CMT treatment.

Developmentally Supportive Care in the Neonatal Intensive Care Unit: An Occupational Therapist’s Role

The role of a pediatric occupational therapist (OT) in the NICU is to provide comprehensive services, including evaluation, treatment, education, decision making, family support, and discharge planning. It may also include early intervention services or outpatient pediatric rehabilitation services. This article will address the need for developmentally supportive care in the NICU, and specifically addresses the role of an OT in this setting. It will explain how crucial collaboration between team members can be in providing quality, comprehensive care for these neonates. In addition, it will address the important role of the parent in this setting for developmentally supportive care while in the NICU and follow-up intervention upon discharge.

Parent and service providers' perceptions regarding the delivery of family-centred paediatric rehabilitation services in a children's hospital

Family-centred service (FCS) provision has long since been acknowledged as the 'best-practice' model within paediatric rehabilitation with numerous reported benefits for both the child and their family. Although family-centred care continues to be investigated worldwide using the Measure of Processes of Care (MPOC) survey, to date only two published studies have been conducted within an Australian context, neither of which were within a hospital setting. As a large number of Australian children attend hospital clinics to receive rehabilitation services, research that investigates FCS within this type of environment is required. This study investigated parent and service providers' perceptions of FCS provision within a large Australian metropolitan children's teaching hospital using the MPOC survey. A total of 100 parents/caregivers (34% response rate) whose child had accessed hospital paediatric rehabilitation services over a 12-month period completed the MPOC-20 survey. Thirty-two completed MPOC-SP surveys (80% response rate) were received from the hospital's rehabilitation service providers. Qualitative data were sourced from service providers on their understanding of the term FCS. Parents' perceptions of FCS provision were generally positive, rating Respectful and Supportive Care the highest and Providing General Information the lowest. No significant differences were identified in relation to location of residence, type of disability or number of disabilities per child. Service providers also rated Providing General Information the lowest and felt Treating People Respectfully was strength in the provision of services. Extended responses from service providers indicated that although they possessed a sound understanding of the meaning of FCS, delivering flexible and accessible services and fostering effective communication among all partners were not widely expressed themes. These results show consistent strengths and weaknesses in FCS provision to children with disabilities and their families and the need to further address the demand for adequate provision of general information.

Reorganizing pediatric rehabilitation services to improve accessibility: do we sacrifice quality?

BackgroundThe impact of a pediatric rehabilitation service delivery reorganization to improve access to services on parents' and service providers' perception of service quality was evaluated. Child-, family-, service- and service provider-related characteristics possibly associated with these perceptions were explored.MethodsPerceptions were measured using the Measure of Processes of Care tools and open ended questions before (2007), during (2008) and following (2009) service reorganization. Child and family characteristics, services received and service provider data were documented. Mean MPOC scores were compared over time (ANOVAs and Generalized Estimating Equations) and t-tests, correlations and ANOVAs determined whether the characteristics influenced scores.ResultsFamilies' (n = 222) and service providers' (n = 129) perceptions of quality were high in 2007 (3.67 to 6.31/7) and remained high over the next 2 years (p ≥ 0.16). Two MPOC domain scores (Respectful care and Providing general information) were consistently scored the highest (mean ≥ 5.66/7) and the lowest (mean ≤ 4.75/7), respectively. Families with more education and those with children 12-21 years old tended to attribute lower MPOC scores. Participants were generally satisfied with the new service model and recommendations included improving information exchange.ConclusionsResults suggest that it is possible to reorganize pediatric rehabilitation services while maintaining quality.

La prise en charge du bavage chez l’enfant en situation de handicap : recommandations de la commission « Pratiques professionnelles » du Réseau régional de rééducation et réadaptation pédiatrique en Rhône-Alpes (R4P)

Excessive drooling is commonly reported by disabled people and their family. There is no predominant standard care procedure available in the literature, and there is no proof of the efficiency of any particular therapy due to the lack of substantiated studies in this area. Réseau régional de rééducation et de réadaptation pédiatrique en Rhône-Alpes ([R4P], founded in 2007) is a regional network of paediatric rehabilitation services with professionals from the Rhône-Alpes region (France) interested in the care and management of disabled children. Within this network, the “Professional practices” commission organised meetings of professionals involved in drooling issues in order to create regional recommendations for the care of drooling in children with disabilities. From an exhaustive literature review and opinions from experts from different specialities (physicians, surgeons, speech therapists, nurses), we have worked in five main directions: assessment, guidance and rehabilitative care, drug treatments, injections of botulinium toxin and surgical treatment of drooling. A recommendation text emerged after several meetings. A simplified format intended for all professionals involved is available from the website www.r4p.fr. This sheet can be easily used in daily practice. More detailed information and working papers are also available from the website.