Children's Rehabilitation Hospital Research Articles

Long‐term implications of a multidisciplinary tube‐weaning program: Parental perspectives

AbstractObjectivesChildren who are unable to eat and drink orally require temporary or permanent enteral nutritional support via tube feeding. The objective was to describe a weaning program held at a children's rehabilitation hospital and to review the long‐term outcomes of the transition from tube nutrition to oral feeding.MethodsThe parents of 82 children who took part in the ALYN intervention program from 2011 to 2022 were requested to participate in a telephone survey to learn about their child's status related to eating, education, social wellbeing, and overall health. They also provided feedback concerning their experience with the tube‐weaning program and their current reliance on support for eating‐related issues.ResultsThe parents of 35 (39%) children responded. Their mean ± SD age at the time of treatment were 2.1 ± 1.76, and the mean ± SD age at the time of the survey 8.85 ± 3.96 years. Their mean current zBMI is −0.7. Overall, parents were very satisfied with the child's eating (4.7 out of 5) ± 0.7, and few reported that the child's eating affected the family mealtime routine (2.1 out of 5) ± 1.3. The children's age at weaning was significantly correlated with parental reports of concern with the child's current eating ability, with younger ages at weaning associated with lower parental concern.ConclusionsThe data demonstrated that despite the complexity of the participants, most children succeed in achieving long‐term independent eating, good nutritional status, and social participation around mealtimes.

Move&Connect: A feasibility study of a group-based active rehabilitation intervention for youth with persistent post-concussion symptoms

<h3>Research Objectives</h3> To examine the feasibility of Move&Connect, a novel active rehabilitation (AR) group-based intervention, for youth with persistent post-concussion symptoms (PPCS). <h3>Design</h3> Qualitative descriptive study. <h3>Setting</h3> A children's rehabilitation hospital in Toronto, Ontario, Canada. <h3>Participants</h3> There is a total of ten participants: five females aged 12-17 years with PPCS ranging from 4-12 months post injury, and their parents of five mothers. The selection procedure is purposive sampling from the hospital's brain injury clinic. <h3>Interventions</h3> Move&Connect is an interdisciplinary group-based intervention that integrates AR and education to address PPCS in youth. It includes individualized low-intensity exercises and teaching of concussion self-management skills. The six-week intervention consists of weekly one hour sessions, and is co-facilitated by an occupational therapist and a physical therapist. <h3>Main Outcome Measures</h3> Semi-structured interviews with youth and parent participants. <h3>Results</h3> Based on content analysis of interview data, a visual representation was developed to capture youth experiences with the intervention. The visual illustrates three overarching categories: (a) Therapeutic engagement, (b) Youth feelings, and (c) Program outcomes. Youth participants reported engaging in meaningful intervention activities, bonding with peers over shared experiences, and learning relevant skillset. Additionally, youth noted feeling confident, motivated, and increased participation in activities of daily living. Parent participants also appreciated the intervention unique features, and emphasized the importance of their children connecting to peers with similar experiences. <h3>Conclusions</h3> Move&Connect merges the benefits of social support, physical activity, and concussion education to help youth with PPCS return to daily activities. Results suggest that the intervention is feasible and meaningful to youth with PPCS. A large-scale pilot study is required to examine the effectiveness of Move&Connect. Study findings will guide future AR and group interventions on concussion care. <h3>Author(s) Disclosures</h3> There are no conflicts or disclosures to be declared by the authors.

Understanding the Characteristics of High-Cost Healthcare Users in a Persistent Concussion Clinic for Youth

<h3>Research Objectives</h3> To investigate the predictors of those with high healthcare costs in a Pediatric Persistent Concussion Clinic. <h3>Design</h3> Cohort study. <h3>Setting</h3> A specialty outpatient clinic in a children's rehabilitation hospital in Toronto, Canada. These services included occupational therapy, physical therapy, social work, and/or neuropsychology. <h3>Participants</h3> A referred sample of 461 youth that had been experiencing post-concussion symptoms for at least 4 weeks. Youth were between 3 to 18 years. 47.4% were male and 53.6% were female. <h3>Interventions</h3> Not applicable. <h3>Main Outcome Measures</h3> Total direct healthcare costs from the Persistent Concussion Clinic. Clients whose total direct healthcare costs were above the 80th percentile ($1655.48) were classified as high-cost users. <h3>Results</h3> Four logistic regressions were conducted and compared to each other using likelihood ratio tests. Each model contained variables from the previous model along with an additional group of variables. Variable selection was determined based on previous conceptual frameworks for predicting high-cost users of healthcare systems. Model 1: Demographic Characteristics (age, sex). Model 2: Medical History (psychiatric history, number of previous concussions, history of therapy). Model 3: Symptom Severity (number of symptoms, symptom duration). Model 4: Service Utilization (number of services used, being prescribed new medication). Model 4 revealed clinically significant effect sizes (i.e., OR > 2). Being prescribed new medication, b = 1.13, p < .001, OR = 3.096 (95% CI: 1.634, 6.027) and the number of services utilized, b = 1.55, p < .001, OR = 4.731 (95% CI: 3.368, 7.011) were found to be significant predictors. A likelihood ratio test shows that this model performs significantly better than the logistic regression without service utilization variables, χ2(2) = 154.2, p < .001. <h3>Conclusions</h3> Service utilization is a significant predictor of high-cost users. Future research should incorporate this information into a prediction algorithm, whereby early service utilization patterns may inform us as to who will have higher healthcare costs. <h3>Author(s) Disclosures</h3> The authors have no conflicts of interest to declare.

Corrigendum.

Gottlieb, L. N. & Gottlieb, B. (2017). Strengths-Based Nursing: A Process for Implementing a Philosophy Into Practice. Journal of Family Nursing, 23, 319-340. Doi: 10.1177/1074840717717731 The authors have identified changes to certain sentences, which they believe are important for their article. These edits are outlined below. Page 328, 8th line from bottom Incorrect sentence: To illustrate, a point-of-care nurse, Jenette Schoon, who works in a long-term children's rehabilitation hospital had been unhappy with the way family discharge planning meetings has been conducted. Correct sentence: To illustrate, a point-of-care nurse, Jenette Schoon, who works in a long-term children's rehabilitation hospital wanted to improve how family team goal planning meetings were conducted. Page 330, 12th line from bottom Incorrect sentence: We chose Hospital for Sick Kids (HSK), a quaternary care hospital, and Holland Bloorview Children's Rehabilitation Hospital (HB), Toronto, Canada, because they were early adopters of SBN and their institutional values aligned with SBN. Correct sentence: SickKids, a quaternary care hospital, and Holland Bloorview Kid's Rehabilitation Hospital (HB), Toronto, Canada, because they were early adopters of SBN and their institutional values aligned with SBN. Page 330, 4th line from bottom Incorrect sentence: In addition, a survey of clinical leaders from HSK and HB was undertaken to assess their learning needs and interest in understanding SBN, as well as the management/leadership concepts and skills that could be offered in a formal SBN management and leadership training program. Correct sentence: In addition, a survey of clinical leaders from SickKids and HB was undertaken to assess their learning needs and interest in understanding SBN, as well as the management/leadership concepts and skills that could be offered in a formal SBN management and leadership training program. Page 334, 15th line from bottom Incorrect sentence: For example, at HB Nursing Department adopted SBN as their nursing philosophy. Correct sentence: For example, at HB Nursing Profession adopted SBN as their nursing philosophy. Page 334, 12th line from bottom Incorrect sentence: Dr. Marilyn Ballantyne, HB's Chief Nursing Executive/Clinical Investigator finds that Strengths-Based Care can help her nursing department achieve the hospital's vision Correct sentence: HB's Chief Nursing Executive/Clinician Investigator finds that Strengths-Based Care can help her achieve the hospital vision.

Connecting Families to Their Health Record and Care Team: The Use, Utility, and Impact of a Client/Family Health Portal at a Children's Rehabilitation Hospital.

BackgroundHealth care portals have the potential to provide consumers with timely, transparent access to health care information and engage them in the care process.ObjectiveThe objective was to examine the use, utility, and impact on engagement in care and caregiver-provider communication of a client/family portal providing access to electronic health records (EHRs) and secure, 2-way e-messaging with care providers.MethodsWe conducted a prospective, mixed-methods study involving collection of caregivers’ portal usage information over a 14-month period (from portal introduction in January 2015 to the end of the study period in March 2016), a Web-based survey for caregivers administered after a minimum of 2 months’ exposure to the portal and repeated 2 months later, and focus groups or individual interviews held with caregivers and service providers at the same points in time. The survey assessed caregivers’ perceptions of the utility of and satisfaction with the EHR and e-messaging, and the portal’s impact on client engagement and perceptions of caregiver-provider communication. A total of 18 caregivers (parents) completed surveys and 6 also took part in focus groups or interviews. In addition, 5 service providers from different disciplines took part in focus groups or interviews.ResultsAlthough usage patterns varied, the typical pattern was a steady level of use (2.5 times a month over an average of 9 months), which is higher than typically reported use. The portal pages most frequently accessed were the home page, health record main page, appointment main page, and reports main page. The Web-based survey captured caregivers’ perceptions of usefulness of and satisfaction with the EHR and portal messaging, as well as the portal’s impact on their engagement in care and perceptions of caregiver-provider communication. The surveys indicated a moderate degree of utility of and satisfaction with the portal features, and a low but emerging impact on engagement in care and caregiver-provider communication (survey scales measuring these outcomes displayed excellent internal consistency, with Cronbach alpha ranging from .89 to .95). Qualitative themes from focus groups and interviews supported and extended the survey findings. Caregivers and service providers saw appreciable information benefits and provided recommendations to increase portal use and utility. Caregivers focused on the scope of organizational adoption of the portal system and indicated their hopes for the future of the portal, whereas service providers were concerned about how to best manage their investment of time and effort in preparing client-friendly reports and messaging clients via the portal.ConclusionsOverall, the findings show the promise of the portal and the need for ongoing evaluation to show the portal’s ultimate potential in enhancing engagement in care and communication with care providers.

Development and feasibility of an evidence-informed self-management education program in pediatric concussion rehabilitation.

BackgroundConcussion is a considerable public health problem in youth. However, identifying, understanding and implementing best evidence informed recovery guidelines may be challenging for families given the vast amount of information available in the public domains (e.g. Internet). The objective of this study was to develop, implement and evaluate the feasibility of an evidence-informed self-management education program for concussion recovery in youth.MethodsSynthesis of best evidence, principles of knowledge translation and exchange, and expert opinion were integrated within a self-management program framework to develop a comprehensive curriculum. The program was implemented and evaluated in a children’s rehabilitation hospital within a universal health care system. A retrospective secondary analysis of anonymous data from a program evaluation survey was used to evaluate program feasibility, to identify features of importance to program participants and to assess changes in participants’ knowledge.ResultsThe program, “Concussion & You” includes a comprehensive, evidence informed, population specific curriculum that teaches participants practical strategies for management of return to school and play, sleep, nutrition, relaxation and energy conservation. A ‘wheel of health’ is used to facilitate participants’ self-management action plan. Results from eighty-seven participant surveys indicate that the program is feasible and participant knowledge increased in all areas of the program with the highest changes reported in knowledge about sleep hygiene, rest and energy conservation.ConclusionFindings indicate that “Concussion & You” is a feasible program that is acceptable to youth and their families, and fills a health system service gap.Electronic supplementary materialThe online version of this article (doi:10.1186/s12913-016-1664-3) contains supplementary material, which is available to authorized users.

How do children with disabilities view ‘healthy living’? A descriptive pilot study

BackgroundChildhood obesity is one of the greatest health problems of the 21st Century. Compared with their non-disabled peers, children with disabilities have been shown to be at higher risk of obesity and associated secondary conditions which can hinder independence and community participation. Health promotion initiatives for children are rarely tailored to those with disabilities, and children may have different perceptions of health and well-being than those without disabilities. These need to be understood for future health promotion programs to be effective. MethodsThis pilot study explored how children with disabilities perceive health and well-being and involved four discussion groups with children who were currently inpatients at a children's rehabilitation hospital. Descriptive thematic analysis was used. ResultsFourteen children (eight girls, six boys; aged 8-13 years) with a range of congenital and acquired conditions participated in one of four discussion groups. There was an awareness of “healthy living” behaviors, nutrition and exercise examples being most commonly cited, although participants particularly discussed “unhealthy” food preferences. Physical capabilities, both before their hospital stay and their expectations for future activities, were also prominent. ConclusionAlthough children in this study had some basic understanding of healthy nutrition, it was not easily translated to their own food choices. Children may need assistance to engage in rewarding physical activities within the constraints of their disability.

Sexuality in Relation to Independence in Daily Functions Among Young People with Spina Bifida Living in Israel

To describe the basic knowledge of body anatomy and functioning, and the sexual knowledge of young adults with spina bifida (SB) and to investigate the associations between independence in daily functions and communication skills on the one hand and sexual knowledge and activity on the other among young people with SB. Twenty-five patients with SB over the age of 16 years, who are under follow-up at the Alyn Children's Rehabilitation Hospital in Jerusalem, Israel, were enrolled in the study. Each patient was interviewed individually using the Sexual Knowledge Interview Schedule and the Functional Independence Measure. There were 17 females and eight males aged 16-35 years, eight of the 25 with a lesion level of L2 and above. At the time of the interview three of the participants had a partner (12%) and seven (28%) indicated that they had had intimate sexual relationships. One subject answered correctly on all questions related to body anatomy, and seven answered correctly on all questions related to body part functions. Positive and significant associations were noted between motor abilities, sphincter management and sexual knowledge (r(p) 0.44-0.65). Knowledge of anatomy and function associated positively with sexual knowledge and experience (r(p) 0.48-0.59). Young adults with SB who live in Israel exhibit a relatively low level of sexual experience. Since knowledge is associated with sexuality, it would be reasonable therefore to provide a structured educational program for this group of young adults, targeted to their unique disability. The rehabilitation nurse is in an optimal position to provide such education given her specialized training in sphincter management and her ongoing holistic view of these young patients.

Integrated Complex Care Model: Lessons Learned from Inter-organizational Partnership

Providing integrated care for children with medical complexity in Canada is challenging as these children are, by definition, in need of coordinated care from disparate providers, organizations and funders across the continuum in order to optimize health outcomes. We describe the development of an inter-organizational team constructed as a unique tripartite partnership of an acute care hospital, a children's rehabilitation hospital and a home/community health organization focused on children who frequently use services across these three organizations. Model building and operationalization within the Canadian healthcare system is emphasized. Key challenges identified to date include communication and policy barriers as well as optimizing interactions with families; critical enablers have been alignment with policy trends in healthcare and inter-organizational commitment to integrate at the point of care. Considerations for policy developments supporting full integration across service sectors are raised. Early indicators of success include the enrolment of 34 clients and patients and the securing of funds to evaluate and expand the model to serve more children.

Using a Trigger Tool to Assess Adverse Drug Events in a Children's Rehabilitation Hospital

Some of the most common actions after an adverse drug event (ADE) have been carefully listed, studied, and described as "triggers." Trigger-based tools for finding and evaluating ADEs have been validated in varied patient populations. A recent article described the frequency and severity of ADEs in hospitalized children in tertiary care children's hospitals. Our objective was to discover whether children in a pediatric rehabilitation setting are at higher risk for ADEs because of polypharmacy, or at a lower risk because of relative overall clinical stability. A pediatric inpatient trigger tool was used in 3 groups of children hospitalized in a pediatric rehabilitation setting. ADE frequencies and patient characteristics were compared with values from a multicenter study using the same tools in pediatric tertiary care hospitals. Changes in ADE frequency over time were assessed (2005, n=20; 2006, n=20; 2008, n=19). No serious ADEs were newly discovered using the trigger tool. Nearly all of the ADEs (16 of 17) discovered by the trigger tool had not been voluntarily reported to the hospital's event reporting program. ADE frequencies expressed per patient were higher than those seen in tertiary care children's hospitals. Longer lengths of stay resulted in lower ADE frequencies when expressed per day. ADE frequency increased in the institution over time, reflecting increases in the acuity and complexity of patients cared for at this facility. Many ADEs affected bowel frequency. Systematic chart review using a trigger tool discovered ADEs that had not been voluntarily reported or evaluated. ADEs in pediatric rehabilitation patients occurred less often than those in tertiary pediatric care when expressed as rates per day, but were more frequent when expressed per patient or per medication. Types and severity of ADEs in pediatric rehabilitation can guide monitoring and attention to specific areas of care.

Determining the effects of therapeutic clowning on nurses in a children's rehabilitation hospital

Objective: This pilot study aimed to determine the effects of therapeutic clowns for hospitalized children on their nurses. Methods: Semi-structured interviews with 13 nurses explored perceptions of the clowns. Measures of physiological arousal, emotion and anxiety were also obtained from nine of these 13 nurses under two conditions – the presence or absence of therapeutic clowns on the unit. Results: Physiologically, the automatic nervous system signals of eight of the nine nurses exhibited consistent changes in patterns of responding when the clowns were present. Emotionally, nurses' reports of negative mood states were also reduced; no changes in anxiety were found. Qualitative data corroborated these findings and suggest that although therapeutic clowns expressly work with children, they also have a relational impact. Conclusions: Clowning seems to improve communication, role negotiation and the meaning of the unit as a social and physical place. A recommendation for mixed method research designs is offered to determine varied effects of arts-based interventions on stakeholders within healthcare settings.

Characteristics of lateral electrical surface stimulation (LESS) and its effect on the degree of spinal deformity in idiopathic scoliosis

Characteristics of lateral electrical surface stimulation (LESS) and its effect on the degree of spinal deformity in idiopathic scoliosis Clinical studies were carried out in the period of 2003-2006 at the Provincial Children's Rehabilitation Hospital in Ameryka near Olsztyn (Poland). The study involved a group of children and youth exhibiting spinal deformity progression in idiopathic scoliosis (IS) of more than 5° per year according to the Cobb scale. Four hundred and fifty patients between 4 and 15 years of age were divided into three groups (n = 150). Group I and group II received 2-hour and 9-hour lateral electrical surface stimulation (LESS), respectively, whereas group III (control) was treated only with corrective exercises for 30 minutes twice a day. LESS was performed with the use of a battery-operated SCOL-2 stimulator manufactured by Elmech, Warsaw, Poland. The effectiveness of this method was confirmed in the treatment of spinal IS in children and youth, especially when the initial spinal deformity did not exceed 20° according to the Cobb scale. A short-duration electrostimulation (2 hours daily) was found to produce results similar to those obtained after overnight (9 h) electrostimulation. Moreover, the analysis of the Harrington prognostic index F confirms the positive effect of LESS in both groups of patients (2 h and 9 h of LESS).

Clinical Usefulness of Culturing H. Pylori from Gastric Juice in Patients with Severe Neurological Impairment

ABSTRACTObjectives:To clarify the diagnostic usefulness of culturing Helicobacter pylori from gastric juice for the diagnosis of H. pylori infection in patients with neurologic impairment.Methods:Seventy‐five patients (44 males, 31 females) with severe neurologic impairment admitted to Tokyo Children's Rehabilitation Hospital were included in this study. Samples of gastric juice obtained from these patients were put into Helicoporter™, a transport medium for H. pylori. Samples were then centrifuged and sediment was inoculated onto a culture medium. Polymerase chain reaction assays were performed on 41 gastric juice samples for comparison with results of culture. Tests for occult blood in gastric juice and serum anti‐H. pylori immunoglobulin G were tested for all patients.Results:H. pylori was isolated from 33 of 75 gastric juice samples by culture (positive rate, 44%). There was agreement between results of culture and polymerase chain reaction assays in 38 samples (93%). Twenty‐two samples were positive and 16 were negative by both methods. In H. pylori immunoglobulin G‐positive patients, occult blood was more frequently found in the culture‐positive group (92%) than in the culture‐negative group (59%) (P &lt;0.025). The rate of detection of occult blood in immunoglobulin G‐negative patients was similar in the culture‐positive group (44%) and culture‐negative group (50%).Conclusions:The combination of a culture method using gastric juice and a serum H. pylori immunoglobulin G assay was not invasive and clinically useful for evaluating H. pylori infections among handicapped patients.

Early transfer to a rehabilitation hospital for infants with chronic bronchopulmonary dysplasia.

Shortly after being weaned off the respirator, 43 infants with severe chronic bronchopulmonary dysplasia (BPD) were transferred from an intensive-care nursery at a teaching hospital to an affiliated children's rehabilitation hospital in a program that included special staff instruction. Morbidity, measured by rate of transfer back to the acute-care hospital, was lower than in a comparison group of 15 infants treated for severe BPD during the previous two years. Average length of stay was significantly shortened and an average of $60,000 per patient was saved. Using a rehabilitation hospital as a step-down unit shifts the emphasis from acute needs to chronic and developmental needs and from intensive monitoring and nursing care to care given at home by parents with nursing assistance.

Effect of Residential Care for Asthmatic Children on School Attendance

Children with chronic asthma who fail outpatient management may benefit from a long-term hospitalization at a residential treatment center. Criteria for determining effectiveness of residential care include comparison of prehospitalization and posthospitalization emergency room visits, acute care admissions, and school attendance. Comparison of the school records can be an indirect indicator of the impact that residential care has on a child's health status. This study examines the attendance from the school year before and that after admission at Children's Rehabilitation Hospital (CRH). Those children who completed the asthma program had an overall increase in attendance of 17.7%. Those who left prematurely had no change in attendance. These results suggest that successful completion of the CRH asthma program can positively modify the impact of chronic asthma on school attendance.