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":" ","pages":""},"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}
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":" ","pages":""},"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}
Elizaveta Bourchtein, Alix McLaughlin, Kimberly Walainis, Amanda Hughes, Eric L Scott, Emily Foxen-Craft
Purpose: The purpose of the present study was to evaluate changes in performance-based physical functioning and investigate psychological predictors of physical functioning over time in pediatric patients with chronic pain who completed an interdisciplinary rehabilitation intensive outpatient program (IOP).
Methods: Participants (N = 55; mean age = 14.92 years; 12.7% male, 87.3% female; 83.6% White, 5.6% African-American/Black; 9.1% Latinx) completed baseline measures assessing pain intensity and modifiable psychological factors (i.e., pain catastrophizing, kinesiophobia, anxiety and depressive symptoms). Participants were administered performance-based assessments of physical functioning (i.e., physical endurance, high-level motor abilities) before and after IOP completion.
Results: Pain intensity was not significantly associated with physical functioning at either timepoint. There was significant improvement on measures of physical functioning after completion of the IOP when controlling for the effects of sex, race, and ethnicity. Depressive symptoms were associated with baseline physical endurance, β = - .28, p = .047, while pain catastrophizing was associated with baseline gross motor abilities, β = - .28, p = .032.
Conclusion: Participation in an IOP led to significant improvement in physical endurance and high-level motor ability. Depressive symptoms and pain catastrophizing were associated with physical functioning at baseline but not post-program completion. Integration of pain psychology and physical therapy in an IOP can help address the interrelated psychological and physical factors impacting physical functioning to improve outcomes for children with chronic pain.
{"title":"Psychological predictors of performance-based physical functioning among pediatric pain program participants.","authors":"Elizaveta Bourchtein, Alix McLaughlin, Kimberly Walainis, Amanda Hughes, Eric L Scott, Emily Foxen-Craft","doi":"10.3233/PRM-220132","DOIUrl":"https://doi.org/10.3233/PRM-220132","url":null,"abstract":"<p><strong>Purpose: </strong>The purpose of the present study was to evaluate changes in performance-based physical functioning and investigate psychological predictors of physical functioning over time in pediatric patients with chronic pain who completed an interdisciplinary rehabilitation intensive outpatient program (IOP).</p><p><strong>Methods: </strong>Participants (N = 55; mean age = 14.92 years; 12.7% male, 87.3% female; 83.6% White, 5.6% African-American/Black; 9.1% Latinx) completed baseline measures assessing pain intensity and modifiable psychological factors (i.e., pain catastrophizing, kinesiophobia, anxiety and depressive symptoms). Participants were administered performance-based assessments of physical functioning (i.e., physical endurance, high-level motor abilities) before and after IOP completion.</p><p><strong>Results: </strong>Pain intensity was not significantly associated with physical functioning at either timepoint. There was significant improvement on measures of physical functioning after completion of the IOP when controlling for the effects of sex, race, and ethnicity. Depressive symptoms were associated with baseline physical endurance, β = - .28, p = .047, while pain catastrophizing was associated with baseline gross motor abilities, β = - .28, p = .032.</p><p><strong>Conclusion: </strong>Participation in an IOP led to significant improvement in physical endurance and high-level motor ability. Depressive symptoms and pain catastrophizing were associated with physical functioning at baseline but not post-program completion. Integration of pain psychology and physical therapy in an IOP can help address the interrelated psychological and physical factors impacting physical functioning to improve outcomes for children with chronic pain.</p>","PeriodicalId":16692,"journal":{"name":"Journal of pediatric rehabilitation medicine","volume":" ","pages":""},"PeriodicalIF":1.9,"publicationDate":"2024-02-27","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"140012778","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}
Purpose: The use of intrathecal medications for the management of spasticity and various pain syndromes in the adult population has been previously reported. However, no evidence-based guidelines currently exist in the pediatric population. This case series presents patients (n = 8) with pediatric-onset disability who underwent placement of intrathecal baclofen pumps initially for management of severe spasticity. Despite titration of dose and use of oral analgesia, their uncontrolled pain persisted. Each patient was transitioned to a combination of baclofen and analgesic intrathecal therapy. The outcome in pain improvement and quality of life, as reported by patients and/or caregivers, were retrospectively reviewed.
Methods: Retrospective review of the background and decision-making process regarding transition to combination intrathecal therapy identified patient selection characteristics. Each patient and/or their caregivers completed a survey regarding improvements in pain, spasticity, function, and quality of life following initiation of combination intrathecal medications.
Results: Survey results revealed improvements in functional and pain assessments after initiation of combination baclofen and analgesic intrathecal medication. Patients and caregivers reported decreases in pain and oral spasticity medications.
Conclusion: Use of pumps with antispasmodic and analgesic medication for combination intrathecal medication delivery should be considered in the management of patients with childhood-onset disabilities who have both severe spasticity and pain.
{"title":"Utilizing combination intrathecal baclofen and analgesic medication to manage spasticity and pain in patients with pediatric-onset disability: Case series.","authors":"Denesh Ratnasingam, Tess Woehrlen, Samantha Koerber, Emma Drenth, Neena Marupudi, Melisa Concepcion, Erika Erlandson","doi":"10.3233/PRM-220100","DOIUrl":"10.3233/PRM-220100","url":null,"abstract":"<p><strong>Purpose: </strong>The use of intrathecal medications for the management of spasticity and various pain syndromes in the adult population has been previously reported. However, no evidence-based guidelines currently exist in the pediatric population. This case series presents patients (n = 8) with pediatric-onset disability who underwent placement of intrathecal baclofen pumps initially for management of severe spasticity. Despite titration of dose and use of oral analgesia, their uncontrolled pain persisted. Each patient was transitioned to a combination of baclofen and analgesic intrathecal therapy. The outcome in pain improvement and quality of life, as reported by patients and/or caregivers, were retrospectively reviewed.</p><p><strong>Methods: </strong>Retrospective review of the background and decision-making process regarding transition to combination intrathecal therapy identified patient selection characteristics. Each patient and/or their caregivers completed a survey regarding improvements in pain, spasticity, function, and quality of life following initiation of combination intrathecal medications.</p><p><strong>Results: </strong>Survey results revealed improvements in functional and pain assessments after initiation of combination baclofen and analgesic intrathecal medication. Patients and caregivers reported decreases in pain and oral spasticity medications.</p><p><strong>Conclusion: </strong>Use of pumps with antispasmodic and analgesic medication for combination intrathecal medication delivery should be considered in the management of patients with childhood-onset disabilities who have both severe spasticity and pain.</p>","PeriodicalId":16692,"journal":{"name":"Journal of pediatric rehabilitation medicine","volume":"17 1","pages":"57-66"},"PeriodicalIF":1.9,"publicationDate":"2024-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10977390/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"140326722","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Paolo Meriggi, Martina Mandalà, Mattia Randazzo, Elena Brazzoli, Anna Castagna, Valentina Di Giusto, Anna Cavallini, Alberto Marzegan, Tiziana Lencioni, Ivana Olivieri
Purpose: Unilateral cerebral palsy (UCP) represents about 30-40% of overall cerebral palsy diagnoses. Upper limb impairment has a significant negative impact on activities of daily living (ADL), and recent studies have shown that the use of virtual reality (VR) can increase motivation and promote an improvement in ADL. This preliminary study was aimed at exploring the acceptability and usability of a VR rehabilitation treatment, using the VITAMIN Platform, for children with UCP. A secondary goal of the study was to compare the results of usual standardized clinical scales and questionnaires with kinematic results as well as with the quantitative measures acquired by the VITAMIN platform in each exercise of the rehabilitation sessions.
Methods: Six children with UCP (aged 7-15) were recruited for a preliminary investigation in using a non-immersive VR system. The treatment was composed of 10 weekly sessions of 45 minutes. Each child played five types of exergames, using the impaired upper limb to hit virtual objects projected on a wide screen. Standardized clinical scales, kinematic analysis, and questionnaires were used to extensively assess upper limb function before and at the end of treatment. Five typically-developing children provided a reference for the instrumented kinematic assessment.
Results: At the end of the treatment, Melbourne Assessment 2 (MA2) scores increased for all the participants (mean increase in range of movement (ROM) + 19.1%, accuracy + 4.6%, dexterity + 13.1%, fluency + 10.3%). Shoulder flexion-extension ROM also improved (mean increase + 10.5°), and according to the kinematic analysis, shoulder movements became more similar to reference profiles. These results were confirmed by a general improvement in performing ADL, assessed by the ABILHAND-Kids questionnaire. Finally, a general agreement among the different measures and indexes emerged from the acquired data.
Conclusion: The results show that VR treatment with the VITAMIN platform could be engaging and functional for rehabilitation of children with UCP. The good agreement among the qualitative and quantitative measures and indexes confirms the potential of such novel treatment. However, due to the limited sample size and small number of sessions, further and larger investigations are required to evaluate the effectiveness and to generalize the results.
{"title":"Non-immersive virtual reality based treatment for children with unilateral cerebral palsy: Preliminary results.","authors":"Paolo Meriggi, Martina Mandalà, Mattia Randazzo, Elena Brazzoli, Anna Castagna, Valentina Di Giusto, Anna Cavallini, Alberto Marzegan, Tiziana Lencioni, Ivana Olivieri","doi":"10.3233/PRM-230028","DOIUrl":"10.3233/PRM-230028","url":null,"abstract":"<p><strong>Purpose: </strong>Unilateral cerebral palsy (UCP) represents about 30-40% of overall cerebral palsy diagnoses. Upper limb impairment has a significant negative impact on activities of daily living (ADL), and recent studies have shown that the use of virtual reality (VR) can increase motivation and promote an improvement in ADL. This preliminary study was aimed at exploring the acceptability and usability of a VR rehabilitation treatment, using the VITAMIN Platform, for children with UCP. A secondary goal of the study was to compare the results of usual standardized clinical scales and questionnaires with kinematic results as well as with the quantitative measures acquired by the VITAMIN platform in each exercise of the rehabilitation sessions.</p><p><strong>Methods: </strong>Six children with UCP (aged 7-15) were recruited for a preliminary investigation in using a non-immersive VR system. The treatment was composed of 10 weekly sessions of 45 minutes. Each child played five types of exergames, using the impaired upper limb to hit virtual objects projected on a wide screen. Standardized clinical scales, kinematic analysis, and questionnaires were used to extensively assess upper limb function before and at the end of treatment. Five typically-developing children provided a reference for the instrumented kinematic assessment.</p><p><strong>Results: </strong>At the end of the treatment, Melbourne Assessment 2 (MA2) scores increased for all the participants (mean increase in range of movement (ROM) + 19.1%, accuracy + 4.6%, dexterity + 13.1%, fluency + 10.3%). Shoulder flexion-extension ROM also improved (mean increase + 10.5°), and according to the kinematic analysis, shoulder movements became more similar to reference profiles. These results were confirmed by a general improvement in performing ADL, assessed by the ABILHAND-Kids questionnaire. Finally, a general agreement among the different measures and indexes emerged from the acquired data.</p><p><strong>Conclusion: </strong>The results show that VR treatment with the VITAMIN platform could be engaging and functional for rehabilitation of children with UCP. The good agreement among the qualitative and quantitative measures and indexes confirms the potential of such novel treatment. However, due to the limited sample size and small number of sessions, further and larger investigations are required to evaluate the effectiveness and to generalize the results.</p>","PeriodicalId":16692,"journal":{"name":"Journal of pediatric rehabilitation medicine","volume":" ","pages":"107-123"},"PeriodicalIF":1.9,"publicationDate":"2024-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10977369/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"140136886","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Purpose: This study examined the effects of a dynamic neoprene orthosis on kinematic variables of gait in children with spastic bilateral cerebral palsy (CP).
Methods: Five children (whose median age was 9.6 years and who ranged in age from six to 12) with spastic bilateral CP and flexed knee at levels I-III of the Gross Motor Function Classification System were examined using kinematic gait analysis in three different conditions: 1) with dynamic neoprene orthosis; 2) without dynamic neoprene orthosis (immediate effect); and 3) without orthosis after six weeks of intervention.
Results: The comparison between condition one (with dynamic neoprene orthosis) and condition two (without dynamic neoprene orthosis) demonstrated the existence of improvements in minimum hip and knee flexion variables. Moreover, the results indicated that the improvements remained constant in several key gait variables after six weeks.
Conclusion: The results varied from subject to subject, and there were signs of improvement in some of the subjects. Therefore, it was not possible to draw conclusions at a group level. Nonetheless, a number of individuals may benefit from this type of orthosis.
{"title":"A case series on the effect of dynamic neoprene orthosis on lower limb kinematic variables in children with cerebral palsy.","authors":"Sedigheh Sadat Mirbagheri, Mahmood Bahramizadeh, Gholamreza Aminian, Hamid Dalvand, Farzam Farahmand, Mohsen Vahedi","doi":"10.3233/PRM-200806","DOIUrl":"10.3233/PRM-200806","url":null,"abstract":"<p><strong>Purpose: </strong>This study examined the effects of a dynamic neoprene orthosis on kinematic variables of gait in children with spastic bilateral cerebral palsy (CP).</p><p><strong>Methods: </strong>Five children (whose median age was 9.6 years and who ranged in age from six to 12) with spastic bilateral CP and flexed knee at levels I-III of the Gross Motor Function Classification System were examined using kinematic gait analysis in three different conditions: 1) with dynamic neoprene orthosis; 2) without dynamic neoprene orthosis (immediate effect); and 3) without orthosis after six weeks of intervention.</p><p><strong>Results: </strong>The comparison between condition one (with dynamic neoprene orthosis) and condition two (without dynamic neoprene orthosis) demonstrated the existence of improvements in minimum hip and knee flexion variables. Moreover, the results indicated that the improvements remained constant in several key gait variables after six weeks.</p><p><strong>Conclusion: </strong>The results varied from subject to subject, and there were signs of improvement in some of the subjects. Therefore, it was not possible to draw conclusions at a group level. Nonetheless, a number of individuals may benefit from this type of orthosis.</p>","PeriodicalId":16692,"journal":{"name":"Journal of pediatric rehabilitation medicine","volume":" ","pages":"131-138"},"PeriodicalIF":1.9,"publicationDate":"2024-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10977358/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"10200312","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Mark Katsma, Haiqing Liu, Xiaoyu Pan, Kyle J Ryan, David P Roye, Henry G Chambers
{"title":"Management and treatment of musculoskeletal problems in adults with cerebral palsy: Experience gained from two lifespan clinics.","authors":"Mark Katsma, Haiqing Liu, Xiaoyu Pan, Kyle J Ryan, David P Roye, Henry G Chambers","doi":"10.3233/PRM-240018","DOIUrl":"10.3233/PRM-240018","url":null,"abstract":"","PeriodicalId":16692,"journal":{"name":"Journal of pediatric rehabilitation medicine","volume":"17 1","pages":"19-33"},"PeriodicalIF":1.9,"publicationDate":"2024-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10977450/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"140326719","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
{"title":"Making medical missions your mission.","authors":"Virginia Simson Nelson","doi":"10.3233/PRM-249003","DOIUrl":"10.3233/PRM-249003","url":null,"abstract":"","PeriodicalId":16692,"journal":{"name":"Journal of pediatric rehabilitation medicine","volume":" ","pages":"145-146"},"PeriodicalIF":0.8,"publicationDate":"2024-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11307023/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"141437023","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Purpose: In accordance with South Africa's restrictions to mitigate the spread of COVID-19, some speech-language pathologists (SLPs) attempted to engage in novice teletherapy regimes to ensure continuity of care for children with cerebral palsy (CP). This study aimed to explore the experiences of caregivers of children with CP implementing SLP teletherapy during COVID-19 in South Africa. The goal was to shed light on how these families can be better supported and how teletherapy practices can be adjusted for this population.
Methods: This study employed a qualitative phenomenological research design using in-person and virtual semi-structured interviews with 18 purposively sampled participants with children with CP who received speech and language teletherapy during COVID-19. The data was evaluated using an inductive thematic analysis approach whereby themes elicited from the caregivers' narratives were analyzed.
Results: Interviews (n = 18) unveiled the significant understanding caregivers gained by becoming integral and active stakeholders in the provision of teletherapy. Caregivers were able to meaningfully communicate and bond with their children with CP. However, caregivers also assumed the burden that teletherapy placed on them, as they had to renegotiate their role during the pandemic in order to provide routine teletherapy.
Conclusion: Findings indicated the need for person-centered SLP teletherapy interventions that utilize contextually and culturally responsive techniques and resources.
{"title":"\"Tremendous burdens often unveil enormous gifts\": The experiences of South African caregivers implementing speech and language teletherapy for children with cerebral palsy during COVID-19.","authors":"Gabriela Evangelou, Skye Nandi Adams","doi":"10.3233/PRM-220118","DOIUrl":"10.3233/PRM-220118","url":null,"abstract":"<p><strong>Purpose: </strong>In accordance with South Africa's restrictions to mitigate the spread of COVID-19, some speech-language pathologists (SLPs) attempted to engage in novice teletherapy regimes to ensure continuity of care for children with cerebral palsy (CP). This study aimed to explore the experiences of caregivers of children with CP implementing SLP teletherapy during COVID-19 in South Africa. The goal was to shed light on how these families can be better supported and how teletherapy practices can be adjusted for this population.</p><p><strong>Methods: </strong>This study employed a qualitative phenomenological research design using in-person and virtual semi-structured interviews with 18 purposively sampled participants with children with CP who received speech and language teletherapy during COVID-19. The data was evaluated using an inductive thematic analysis approach whereby themes elicited from the caregivers' narratives were analyzed.</p><p><strong>Results: </strong>Interviews (n = 18) unveiled the significant understanding caregivers gained by becoming integral and active stakeholders in the provision of teletherapy. Caregivers were able to meaningfully communicate and bond with their children with CP. However, caregivers also assumed the burden that teletherapy placed on them, as they had to renegotiate their role during the pandemic in order to provide routine teletherapy.</p><p><strong>Conclusion: </strong>Findings indicated the need for person-centered SLP teletherapy interventions that utilize contextually and culturally responsive techniques and resources.</p>","PeriodicalId":16692,"journal":{"name":"Journal of pediatric rehabilitation medicine","volume":" ","pages":"85-96"},"PeriodicalIF":1.9,"publicationDate":"2024-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10977356/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"139513089","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}