Cara Palusak, Libby Dart, Angela Ciccia, Drew Nagele, Jennifer P Lundine
Purpose: This study aimed to identify unique challenges created by COVID-19 school closures for students with traumatic brain injury (TBI) and their families with relation to special education accommodations, therapy services, social support systems, and mental health complications.
Methods: Forty-one caregivers and students participated in semi-structured, virtual interviews. Families had students in kindergarten through 12th grade who experienced a TBI prior to spring 2020 and were receiving support services at schools in Pennsylvania (US). Researchers used reflexive thematic analysis to identify themes across interviews.
Results: Central themes encompassing the student- and caregiver-reported challenges and advantages of COVID-19 school closures were changes in [1] education delivery, special education services, and accommodations for children with TBI, and [2] social relationships for students with TBI and their caregivers.
Conclusion: COVID-19 and the transition to remote learning significantly impacted special education services and education received by students with TBI. Families in this study discussed both perceived obstacles to and advantages of remote learning in this population. As remote and asynchronous learning are now commonly integrated into the curriculum, research should clarify the facilitators and barriers for successful service provision for students with TBI.
{"title":"Caregiver and student perspectives on school services for students with traumatic brain injury during the COVID-19 pandemic.","authors":"Cara Palusak, Libby Dart, Angela Ciccia, Drew Nagele, Jennifer P Lundine","doi":"10.3233/PRM-230021","DOIUrl":"https://doi.org/10.3233/PRM-230021","url":null,"abstract":"<p><strong>Purpose: </strong>This study aimed to identify unique challenges created by COVID-19 school closures for students with traumatic brain injury (TBI) and their families with relation to special education accommodations, therapy services, social support systems, and mental health complications.</p><p><strong>Methods: </strong>Forty-one caregivers and students participated in semi-structured, virtual interviews. Families had students in kindergarten through 12th grade who experienced a TBI prior to spring 2020 and were receiving support services at schools in Pennsylvania (US). Researchers used reflexive thematic analysis to identify themes across interviews.</p><p><strong>Results: </strong>Central themes encompassing the student- and caregiver-reported challenges and advantages of COVID-19 school closures were changes in [1] education delivery, special education services, and accommodations for children with TBI, and [2] social relationships for students with TBI and their caregivers.</p><p><strong>Conclusion: </strong>COVID-19 and the transition to remote learning significantly impacted special education services and education received by students with TBI. Families in this study discussed both perceived obstacles to and advantages of remote learning in this population. As remote and asynchronous learning are now commonly integrated into the curriculum, research should clarify the facilitators and barriers for successful service provision for students with TBI.</p>","PeriodicalId":16692,"journal":{"name":"Journal of pediatric rehabilitation medicine","volume":null,"pages":null},"PeriodicalIF":0.8,"publicationDate":"2024-08-30","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142108498","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Appetite for Risk is an autobiographical memoir of the author's life experiences. He vividly explains near-death experiences while maintaining humor, regaling about his escapades. It is thought-provoking to consider if human risky behavior is genetically predetermined.
{"title":"Review of Appetite for Risk-What it is, Who has it and How I survived, by Robert R. Abbott.","authors":"Rajashree Srinivasan","doi":"10.3233/PRM-240045","DOIUrl":"https://doi.org/10.3233/PRM-240045","url":null,"abstract":"<p><p>Appetite for Risk is an autobiographical memoir of the author's life experiences. He vividly explains near-death experiences while maintaining humor, regaling about his escapades. It is thought-provoking to consider if human risky behavior is genetically predetermined.</p>","PeriodicalId":16692,"journal":{"name":"Journal of pediatric rehabilitation medicine","volume":null,"pages":null},"PeriodicalIF":0.8,"publicationDate":"2024-08-29","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142108499","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Talia Collier, Jonathan Castillo, Lisa Thornton, Santiago Vallasciani, Heidi Castillo
Purpose: This paper describes the development and characteristics of a multi-disciplinary spina bifida clinic in Qatar considering the recently revised and globally available Guidelines for the Care of People with Spina Bifida (GCPSB).
Methods: A retrospective chart review was performed on individuals in Sidra's multidisciplinary spina bifida clinic database from January 2019 to June 2020. Their electronic health records were reviewed for demographics, as well as neurosurgical, urologic, rehabilitation, and orthopedic interventions.
Results: There were 127 patients in the database; 117 met inclusion criteria for diagnoses of myelomeningocele, meningocele, sacral agenesis/caudal regression, and/or spinal lipoma. Generally, Qatar is following GCPSB recommendations for multidisciplinary care. Consanguineous relationships, difficulties with access to urological and rehabilitation supplies and equipment, school access, and variable timing of neurosurgical closure were areas that demonstrated differences from GCPSB recommendations due to barriers in implementation.
Conclusion: The GCPSB recommendations are applicable in an international setting such as Qatar. Despite a few barriers in implementing some of the recommendations, this new multi-disciplinary spina bifida clinic demonstrates alignment with many of the GCPSB guidelines.
{"title":"Analysis of a newly developed multidisciplinary program in the Middle East informed by the recently revised spina bifida guidelines.","authors":"Talia Collier, Jonathan Castillo, Lisa Thornton, Santiago Vallasciani, Heidi Castillo","doi":"10.3233/PRM-230034","DOIUrl":"https://doi.org/10.3233/PRM-230034","url":null,"abstract":"<p><strong>Purpose: </strong>This paper describes the development and characteristics of a multi-disciplinary spina bifida clinic in Qatar considering the recently revised and globally available Guidelines for the Care of People with Spina Bifida (GCPSB).</p><p><strong>Methods: </strong>A retrospective chart review was performed on individuals in Sidra's multidisciplinary spina bifida clinic database from January 2019 to June 2020. Their electronic health records were reviewed for demographics, as well as neurosurgical, urologic, rehabilitation, and orthopedic interventions.</p><p><strong>Results: </strong>There were 127 patients in the database; 117 met inclusion criteria for diagnoses of myelomeningocele, meningocele, sacral agenesis/caudal regression, and/or spinal lipoma. Generally, Qatar is following GCPSB recommendations for multidisciplinary care. Consanguineous relationships, difficulties with access to urological and rehabilitation supplies and equipment, school access, and variable timing of neurosurgical closure were areas that demonstrated differences from GCPSB recommendations due to barriers in implementation.</p><p><strong>Conclusion: </strong>The GCPSB recommendations are applicable in an international setting such as Qatar. Despite a few barriers in implementing some of the recommendations, this new multi-disciplinary spina bifida clinic demonstrates alignment with many of the GCPSB guidelines.</p>","PeriodicalId":16692,"journal":{"name":"Journal of pediatric rehabilitation medicine","volume":null,"pages":null},"PeriodicalIF":0.8,"publicationDate":"2024-08-23","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142108497","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Christopher D King, Vanessa A Olbrecht, Susan L Crowley, Kimberly L Klages, Emily T Deet, Nicole D Samuel, Kelsey Smith, Sara E Williams, Kendra J Homan
Virtual reality (VR) is an innovative technology with the potential to enhance treatment for children with chronic pain and functional symptoms. Currently, little is known about patients' experiences of VR in the setting of intensive interdisciplinary pain treatment (IIPT). This study aimed to better understand how patients engage with and benefit from VR. This case report focuses on a 12-year-old female with amplified musculoskeletal pain syndrome and comorbid functional neurological disorder receiving treatment in inpatient IIPT. VR was incorporated into physical/occupational and recreational therapy sessions. A semi-structured interview was completed one-month post-discharge. Qualitative analysis revealed three major themes: Process of Change (VR was unique/immersive, reduced pain focus, challenged skepticism, and changed pain perception), Efficacy (VR increased movement, supported transitioning from a wheelchair to walking independently, and increased confidence, excitement, and surprise), and Engagement (VR aided in acknowledging progress, increased camaraderie, was fun, and challenged patient to extend treatment goals made in VR to real life). Therapist observations of the benefits and barriers to using VR in treatment are described. Overall, this report indicates that VR may be a helpful tool to use with existing IIPT interventions to enhance patient engagement in treatment and improve functionaloutcomes.
{"title":"\"Virtual reality fixed me\": A case report of the use of virtual reality during intensive interdisciplinary pain treatment.","authors":"Christopher D King, Vanessa A Olbrecht, Susan L Crowley, Kimberly L Klages, Emily T Deet, Nicole D Samuel, Kelsey Smith, Sara E Williams, Kendra J Homan","doi":"10.3233/PRM-230059","DOIUrl":"https://doi.org/10.3233/PRM-230059","url":null,"abstract":"<p><p>Virtual reality (VR) is an innovative technology with the potential to enhance treatment for children with chronic pain and functional symptoms. Currently, little is known about patients' experiences of VR in the setting of intensive interdisciplinary pain treatment (IIPT). This study aimed to better understand how patients engage with and benefit from VR. This case report focuses on a 12-year-old female with amplified musculoskeletal pain syndrome and comorbid functional neurological disorder receiving treatment in inpatient IIPT. VR was incorporated into physical/occupational and recreational therapy sessions. A semi-structured interview was completed one-month post-discharge. Qualitative analysis revealed three major themes: Process of Change (VR was unique/immersive, reduced pain focus, challenged skepticism, and changed pain perception), Efficacy (VR increased movement, supported transitioning from a wheelchair to walking independently, and increased confidence, excitement, and surprise), and Engagement (VR aided in acknowledging progress, increased camaraderie, was fun, and challenged patient to extend treatment goals made in VR to real life). Therapist observations of the benefits and barriers to using VR in treatment are described. Overall, this report indicates that VR may be a helpful tool to use with existing IIPT interventions to enhance patient engagement in treatment and improve functionaloutcomes.</p>","PeriodicalId":16692,"journal":{"name":"Journal of pediatric rehabilitation medicine","volume":null,"pages":null},"PeriodicalIF":0.8,"publicationDate":"2024-08-16","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"141992355","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Hussein Ziab, Soha Saleh, Saeed Talebian, Golamreza Olyaei, Rami Mazbouh, Ahmad Rifai Sarraj, Mohamad Reza Hadian
Purpose: The purpose of this study was to compare the clinical efficacy of a virtual reality rehabilitation-based training (VRT) with balance-specific training (BST) and conventional training (CT) on the balance and gross motor functions (GMF) of children with cerebral palsy (CwCP).
Methods: This study was a double blinded, randomized controlled trial. Participants were recruited from different CP rehabilitation centers and clinics and were then randomly allocated using the block randomization method into three groups: (1) group 1 (VRT using a set of Xbox 360 games that triggered balance), (2) group 2 (BST applying a protocol of 13 exercises to enhance balance in different conditions), and (3) control group 3 (CT using traditional physiotherapy techniques). All groups received 18 sessions over six weeks, three sessions per week, each lasting 60 minutes. Participants were assessed at three timepoints (baseline, post-treatment, and follow-up) using the Pediatric Balance Scale (PBS), the Gross Motor Function Measure (GMFM D & E), the Five Times Sit-To-Stand Test, and upper and lower segments' center of mass (COM) displacement (UCOM and LCOM).
Results: A total of 46 CwCP participated in this study. The repeated measures ANOVA revealed a statistically significant difference between groups in the dependent variables, except for the GMFM (D & E) and the PBS (p < 0.05 and partial η2 = 0.473). The post-hoc test showed a statistically significant difference in favor of the VRT group compared to other groups in terms of right UCOM (p < 0.05) with a large effect size of the time*group interaction (partial η2 = 0.87). Moreover, there was a statistically significant effect of time (i.e., baseline to post-treatment and baseline to follow-up) with F (18, 23) = 59.954, p < 0.05, Wilks' lambda = 0.021, partial η2 = 0.979.
Conclusion: The findings revealed that VRT was not superior to BST in the rehabilitation of balance and GMF in CwCP aged four to 12 years. However, when compared to CT, better results were reported. Furthermore, it appears that customized programs lead to greater improvements in balance than commercial programs. Future studies are needed to assess the physiological effects of the three types of rehabilitation interventions using more advanced measurement tools, such as functional magnetic resonance imaging, following VRT protocols.
{"title":"Effectiveness of virtual reality training compared to balance-specific training and conventional training on balance and gross motor functions of children with cerebral palsy: A double blinded randomized controlled trial.","authors":"Hussein Ziab, Soha Saleh, Saeed Talebian, Golamreza Olyaei, Rami Mazbouh, Ahmad Rifai Sarraj, Mohamad Reza Hadian","doi":"10.3233/PRM-220120","DOIUrl":"https://doi.org/10.3233/PRM-220120","url":null,"abstract":"<p><strong>Purpose: </strong>The purpose of this study was to compare the clinical efficacy of a virtual reality rehabilitation-based training (VRT) with balance-specific training (BST) and conventional training (CT) on the balance and gross motor functions (GMF) of children with cerebral palsy (CwCP).</p><p><strong>Methods: </strong>This study was a double blinded, randomized controlled trial. Participants were recruited from different CP rehabilitation centers and clinics and were then randomly allocated using the block randomization method into three groups: (1) group 1 (VRT using a set of Xbox 360 games that triggered balance), (2) group 2 (BST applying a protocol of 13 exercises to enhance balance in different conditions), and (3) control group 3 (CT using traditional physiotherapy techniques). All groups received 18 sessions over six weeks, three sessions per week, each lasting 60 minutes. Participants were assessed at three timepoints (baseline, post-treatment, and follow-up) using the Pediatric Balance Scale (PBS), the Gross Motor Function Measure (GMFM D & E), the Five Times Sit-To-Stand Test, and upper and lower segments' center of mass (COM) displacement (UCOM and LCOM).</p><p><strong>Results: </strong>A total of 46 CwCP participated in this study. The repeated measures ANOVA revealed a statistically significant difference between groups in the dependent variables, except for the GMFM (D & E) and the PBS (p < 0.05 and partial η2 = 0.473). The post-hoc test showed a statistically significant difference in favor of the VRT group compared to other groups in terms of right UCOM (p < 0.05) with a large effect size of the time*group interaction (partial η2 = 0.87). Moreover, there was a statistically significant effect of time (i.e., baseline to post-treatment and baseline to follow-up) with F (18, 23) = 59.954, p < 0.05, Wilks' lambda = 0.021, partial η2 = 0.979.</p><p><strong>Conclusion: </strong>The findings revealed that VRT was not superior to BST in the rehabilitation of balance and GMF in CwCP aged four to 12 years. However, when compared to CT, better results were reported. Furthermore, it appears that customized programs lead to greater improvements in balance than commercial programs. Future studies are needed to assess the physiological effects of the three types of rehabilitation interventions using more advanced measurement tools, such as functional magnetic resonance imaging, following VRT protocols.</p>","PeriodicalId":16692,"journal":{"name":"Journal of pediatric rehabilitation medicine","volume":null,"pages":null},"PeriodicalIF":0.8,"publicationDate":"2024-08-16","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"141992307","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Marloes L J Lagarde, Karen van Hulst, Corrie E Erasmus, Lenie van den Engel-Hoek, Alexander C H Geurts, Nens van Alfen
Purpose: Quantitative muscle ultrasound (QMUS) is potentially valuable as a diagnostic tool in central neurological disorders, as it provides information about changes in muscle architecture. This study aimed to investigate whether ultrasound images of the submental and masticatory muscles in children with spastic cerebral palsy (CP) differ from those obtained in a reference group, and whether observed ultrasound abnormalities differ between subgroups of children with different Eating and Drinking Ability Classification System (EDACS) levels to support its construct validity.
Methods: A prospective cohort study was conducted in 25 children with spastic CP aged 3-18 years. QMUS of selected muscles was performed. Muscle thickness and echogenicity in the CP group were compared to previously collected reference values, and between different EDACS levels within the CP group.
Results: Median echogenicity of all muscles was significantly higher in children with CP than in healthy controls. The temporalis muscle was significantly thinner in the CP group. There were no differences in muscle thickness or echogenicity between EDACS levels.
Conclusion: QMUS is able to detect abnormal architecture of submental and masticatory muscles in children with spastic CP, but the interpretation of abnormalities in relation to the severity of mastication and swallowing problems needs further investigation.
{"title":"Quantitative ultrasound of submental and masticatory muscles in children with cerebral palsy.","authors":"Marloes L J Lagarde, Karen van Hulst, Corrie E Erasmus, Lenie van den Engel-Hoek, Alexander C H Geurts, Nens van Alfen","doi":"10.3233/PRM-230029","DOIUrl":"https://doi.org/10.3233/PRM-230029","url":null,"abstract":"<p><strong>Purpose: </strong>Quantitative muscle ultrasound (QMUS) is potentially valuable as a diagnostic tool in central neurological disorders, as it provides information about changes in muscle architecture. This study aimed to investigate whether ultrasound images of the submental and masticatory muscles in children with spastic cerebral palsy (CP) differ from those obtained in a reference group, and whether observed ultrasound abnormalities differ between subgroups of children with different Eating and Drinking Ability Classification System (EDACS) levels to support its construct validity.</p><p><strong>Methods: </strong>A prospective cohort study was conducted in 25 children with spastic CP aged 3-18 years. QMUS of selected muscles was performed. Muscle thickness and echogenicity in the CP group were compared to previously collected reference values, and between different EDACS levels within the CP group.</p><p><strong>Results: </strong>Median echogenicity of all muscles was significantly higher in children with CP than in healthy controls. The temporalis muscle was significantly thinner in the CP group. There were no differences in muscle thickness or echogenicity between EDACS levels.</p><p><strong>Conclusion: </strong>QMUS is able to detect abnormal architecture of submental and masticatory muscles in children with spastic CP, but the interpretation of abnormalities in relation to the severity of mastication and swallowing problems needs further investigation.</p>","PeriodicalId":16692,"journal":{"name":"Journal of pediatric rehabilitation medicine","volume":null,"pages":null},"PeriodicalIF":0.8,"publicationDate":"2024-07-02","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"141600258","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Donatella Saviola, Katia de Gaetano, Stefania Bruni, Margherita Chiari, Chiara Moschini, Erica Battagliola, Daniela Colla, Matteo Cantoni, Antonio De Tanti
Purpose: A case report of a six-year and five-month-old female admitted with typical symptoms of Rubinstein-Taybi syndrome is presented. Clinical and rehabilitation settings where she acquired her reading, writing, and communication skills are described.
Methods: Because of her cognitive disabilities, a multidisciplinary and long-term intervention (2014-2020) was necessary. Treatment included orthoptic, psychomotor, logopedic, occupational, and neuropsychological care. Her family and school were involved.
Results: Increased attention led to decreased dysfunctional behaviors. Test results are still below average, but there has been significant improvement. Better communication skills resulted from increased phonetic range, improved articulation, lexical-semantic structure, comprehension, and production of sentences. Digital technologies played a significant role in enhancing her communication skills, not just in social interactions but also in school activities. The patient is oriented in time and space with the help of agendas and calendars. She can express her needs and compose concise narratives. As a result of acquiring functional skills, she is better equipped to handle real-life situations, which has led to increased social and family activities.
Conclusion: This case report highlights the importance of personalized rehabilitation programs. Obtaining an early genetic diagnosis is crucial for timely tailored rehabilitation, and any delays in this process can hinder progress.
{"title":"The functional secondary effect after an integrated rehabilitative intervention to learn reading and writing in a girl with Rubinstein-Taybi syndrome.","authors":"Donatella Saviola, Katia de Gaetano, Stefania Bruni, Margherita Chiari, Chiara Moschini, Erica Battagliola, Daniela Colla, Matteo Cantoni, Antonio De Tanti","doi":"10.3233/PRM-230051","DOIUrl":"https://doi.org/10.3233/PRM-230051","url":null,"abstract":"<p><strong>Purpose: </strong>A case report of a six-year and five-month-old female admitted with typical symptoms of Rubinstein-Taybi syndrome is presented. Clinical and rehabilitation settings where she acquired her reading, writing, and communication skills are described.</p><p><strong>Methods: </strong>Because of her cognitive disabilities, a multidisciplinary and long-term intervention (2014-2020) was necessary. Treatment included orthoptic, psychomotor, logopedic, occupational, and neuropsychological care. Her family and school were involved.</p><p><strong>Results: </strong>Increased attention led to decreased dysfunctional behaviors. Test results are still below average, but there has been significant improvement. Better communication skills resulted from increased phonetic range, improved articulation, lexical-semantic structure, comprehension, and production of sentences. Digital technologies played a significant role in enhancing her communication skills, not just in social interactions but also in school activities. The patient is oriented in time and space with the help of agendas and calendars. She can express her needs and compose concise narratives. As a result of acquiring functional skills, she is better equipped to handle real-life situations, which has led to increased social and family activities.</p><p><strong>Conclusion: </strong>This case report highlights the importance of personalized rehabilitation programs. Obtaining an early genetic diagnosis is crucial for timely tailored rehabilitation, and any delays in this process can hinder progress.</p>","PeriodicalId":16692,"journal":{"name":"Journal of pediatric rehabilitation medicine","volume":null,"pages":null},"PeriodicalIF":0.8,"publicationDate":"2024-06-20","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"141437024","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Tyler Estes, Aaron Gaul, Allison Thornton, Laura Hobart-Porter
Case description: A five-year-old male with spastic quadriplegia cerebral palsy and an expressive communication disorder presented because the family desired liberalization of diet. The diet consisted of pureed solids and no liquids due to deficits identified on bedside swallow evaluation; further dysphagia assessment had not been obtained due to significant procedural anxiety. Comprehensive approaches were taken involving premedication with buspirone, desensitization, distraction, and positive reinforcement. The fluoroscopic swallow study was successfully completed, and the patient's diet was upgraded to include moderately thickened liquids.
Discussion: Procedural anxiety management in special populations is not well-researched. The lack of definitive recommendations regarding these issues increases the difficulty of managing these patients. This case highlights one successful approach to addressing individual needs using widely-available pharmacologic and environmental techniques. Additionally, this case reinforces the need to identify underlying causes for procedural anxiety and involve an interdisciplinary team.
Conclusions: Attempts should be made to identify factors driving procedural anxiety. After discussing with the patient and family, relevant information should be relayed to staff with an open-ended invitation to propose ideas. While not all hospitals have equivalent resources, concerns related to unfamiliarity, underlying anxiety, and locus of control can be addressed with limited resource utilization, as demonstrated in this case.
{"title":"Approach to obtaining a swallow study in a five-year-old with a disability and significant procedural anxiety: A case report.","authors":"Tyler Estes, Aaron Gaul, Allison Thornton, Laura Hobart-Porter","doi":"10.3233/PRM-230063","DOIUrl":"https://doi.org/10.3233/PRM-230063","url":null,"abstract":"<p><strong>Case description: </strong>A five-year-old male with spastic quadriplegia cerebral palsy and an expressive communication disorder presented because the family desired liberalization of diet. The diet consisted of pureed solids and no liquids due to deficits identified on bedside swallow evaluation; further dysphagia assessment had not been obtained due to significant procedural anxiety. Comprehensive approaches were taken involving premedication with buspirone, desensitization, distraction, and positive reinforcement. The fluoroscopic swallow study was successfully completed, and the patient's diet was upgraded to include moderately thickened liquids.</p><p><strong>Discussion: </strong>Procedural anxiety management in special populations is not well-researched. The lack of definitive recommendations regarding these issues increases the difficulty of managing these patients. This case highlights one successful approach to addressing individual needs using widely-available pharmacologic and environmental techniques. Additionally, this case reinforces the need to identify underlying causes for procedural anxiety and involve an interdisciplinary team.</p><p><strong>Conclusions: </strong>Attempts should be made to identify factors driving procedural anxiety. After discussing with the patient and family, relevant information should be relayed to staff with an open-ended invitation to propose ideas. While not all hospitals have equivalent resources, concerns related to unfamiliarity, underlying anxiety, and locus of control can be addressed with limited resource utilization, as demonstrated in this case.</p>","PeriodicalId":16692,"journal":{"name":"Journal of pediatric rehabilitation medicine","volume":null,"pages":null},"PeriodicalIF":1.9,"publicationDate":"2024-05-24","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"141093095","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
J. O’Brien, Helene M Dumas, M. L. Hughes, Brittany Ryan, V. Kharasch
PURPOSE This study aimed to describe daytime and nighttime use and outcome of non-invasive respiratory intervention (NIRI) for infants born prematurely and for children with medical complexity (CMC) during a post-acute care hospital (PACH) admission. METHODS Thirty-eight initial PACH admissions (October 2018 through September 2020) for premature infants (< 1 year; n = 19) and CMC (> 1 year; n = 19) requiring NIRI during the day and/or at night were retrospectively examined. Measures included: 1) daytime and nighttime NIRI use by type (supplemental oxygen therapy via low-flow nasal cannula or positive airway pressure [PAP] via high-flow nasal cannula, continuous positive airway pressure, or biphasic positive airway pressure at admission and discharge) and 2) daytime and nighttime NIRI outcome reduction, increase, or no change from admission to discharge. RESULTS For the total sample (n = 38), daytime vs nighttime NIRI use was significantly different (p < 0.001). At both admission and discharge, supplemental oxygen was the most common NIRI during the day, while PAP was most common at night. From admission to discharge, seven (18%) infants and children had a positive change (reduced NIRI) during the day, while nine (24%) had a positive change at night. At discharge, 11/38 (29%) infants and children required no daytime NIRI, while 4/38 (11%) required no day or night NIRI. CONCLUSION NIRI use differs between day and night at PACH admission and discharge for CMC. Reductions in NIRI were achieved during the day and at night from PACH admission to discharge for both infants born prematurely and for children with varied congenital, neurological, or cardiac diagnoses.
{"title":"Post-acute day and night non-invasive respiratory intervention use and outcome: A brief report.","authors":"J. O’Brien, Helene M Dumas, M. L. Hughes, Brittany Ryan, V. Kharasch","doi":"10.3233/PRM-220094","DOIUrl":"https://doi.org/10.3233/PRM-220094","url":null,"abstract":"PURPOSE\u0000This study aimed to describe daytime and nighttime use and outcome of non-invasive respiratory intervention (NIRI) for infants born prematurely and for children with medical complexity (CMC) during a post-acute care hospital (PACH) admission.\u0000\u0000\u0000METHODS\u0000Thirty-eight initial PACH admissions (October 2018 through September 2020) for premature infants (< 1 year; n = 19) and CMC (> 1 year; n = 19) requiring NIRI during the day and/or at night were retrospectively examined. Measures included: 1) daytime and nighttime NIRI use by type (supplemental oxygen therapy via low-flow nasal cannula or positive airway pressure [PAP] via high-flow nasal cannula, continuous positive airway pressure, or biphasic positive airway pressure at admission and discharge) and 2) daytime and nighttime NIRI outcome reduction, increase, or no change from admission to discharge.\u0000\u0000\u0000RESULTS\u0000For the total sample (n = 38), daytime vs nighttime NIRI use was significantly different (p < 0.001). At both admission and discharge, supplemental oxygen was the most common NIRI during the day, while PAP was most common at night. From admission to discharge, seven (18%) infants and children had a positive change (reduced NIRI) during the day, while nine (24%) had a positive change at night. At discharge, 11/38 (29%) infants and children required no daytime NIRI, while 4/38 (11%) required no day or night NIRI.\u0000\u0000\u0000CONCLUSION\u0000NIRI use differs between day and night at PACH admission and discharge for CMC. Reductions in NIRI were achieved during the day and at night from PACH admission to discharge for both infants born prematurely and for children with varied congenital, neurological, or cardiac diagnoses.","PeriodicalId":16692,"journal":{"name":"Journal of pediatric rehabilitation medicine","volume":null,"pages":null},"PeriodicalIF":1.9,"publicationDate":"2024-04-02","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"140754200","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Asmaa A El Sehmawy, Shaimaa Younes Abd Elaziz, Asmaa Abdelghany Elsheikh, Fatma A Elsawy, Amal Abd Elsalam Amin, Ahmed Mostafa Omran, Amal Younan Abd El Malek
Purpose: The current study aimed to determine the prevalence of specific psychiatric disorders, identify predictors associated with these disorders, and assess the quality of life (QoL) among children with congenital heart disease.
Methods: This comparative cross-sectional study was conducted in the National Heart Institute outpatient clinics. It included 204 children with structural congenital heart defects (CHD). In addition to assessing QoL with the Pediatric Quality of Life Inventory scale, the Mini-International Neuropsychiatric Interview for Children and Adolescents was utilized to identify psychiatric disorders in the children studied.
Results: Children with CHD were at increased risk for mood and anxiety disorders. They were also more susceptible to obsessive-compulsive disorder than the comprative healthy group. In children with CHD, the cyanotic group demonstrated a greater decrease in QoL than the acyanotic group.
Conclusion: Children with CHD have an increased risk of psychiatric disorders and a lower overall QoL score.
目的:本研究旨在确定先天性心脏病患儿中特定精神障碍的患病率,识别与这些障碍相关的预测因素,并评估其生活质量(QoL):这项横断面比较研究在国家心脏研究所门诊部进行。方法:这项横断面比较研究是在国家心脏研究所门诊进行的,包括204名患有结构性先天性心脏缺陷(CHD)的儿童。除了使用儿科生活质量量表评估儿童的生活质量外,还使用了儿童和青少年迷你国际神经精神访谈来确定研究儿童的精神疾病:结果:患有先天性心脏病的儿童患情绪和焦虑症的风险增加。结果发现:患有先天性心脏病的儿童罹患情绪和焦虑症的风险更高,他们也比正常健康儿童更容易患强迫症。在患有先天性心脏病的儿童中,发绀组的 QoL 下降幅度大于无绀组:结论:患有先天性心脏病的儿童患精神疾病的风险更高,总体 QoL 分数更低。
{"title":"Assessment of mental health and quality of life among children with congenital heart disease.","authors":"Asmaa A El Sehmawy, Shaimaa Younes Abd Elaziz, Asmaa Abdelghany Elsheikh, Fatma A Elsawy, Amal Abd Elsalam Amin, Ahmed Mostafa Omran, Amal Younan Abd El Malek","doi":"10.3233/PRM-220109","DOIUrl":"https://doi.org/10.3233/PRM-220109","url":null,"abstract":"<p><strong>Purpose: </strong>The current study aimed to determine the prevalence of specific psychiatric disorders, identify predictors associated with these disorders, and assess the quality of life (QoL) among children with congenital heart disease.</p><p><strong>Methods: </strong>This comparative cross-sectional study was conducted in the National Heart Institute outpatient clinics. It included 204 children with structural congenital heart defects (CHD). In addition to assessing QoL with the Pediatric Quality of Life Inventory scale, the Mini-International Neuropsychiatric Interview for Children and Adolescents was utilized to identify psychiatric disorders in the children studied.</p><p><strong>Results: </strong>Children with CHD were at increased risk for mood and anxiety disorders. They were also more susceptible to obsessive-compulsive disorder than the comprative healthy group. In children with CHD, the cyanotic group demonstrated a greater decrease in QoL than the acyanotic group.</p><p><strong>Conclusion: </strong>Children with CHD have an increased risk of psychiatric disorders and a lower overall QoL score.</p>","PeriodicalId":16692,"journal":{"name":"Journal of pediatric rehabilitation medicine","volume":null,"pages":null},"PeriodicalIF":1.9,"publicationDate":"2024-03-29","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"140326716","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}