Journal of pediatric rehabilitation medicine最新文献

{"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":0.8,"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}

{"title":"Erratum to: 2023 updates to the spina bifida transition to adult care guidelines.","authors":"","doi":"10.3233/PRM-249001","DOIUrl":"10.3233/PRM-249001","url":null,"abstract":"","PeriodicalId":16692,"journal":{"name":"Journal of pediatric rehabilitation medicine","volume":"17 1","pages":"143"},"PeriodicalIF":1.9,"publicationDate":"2024-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11002717/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"140326717","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":"Clinical feeding assessment: An effective screening test to predict aspiration in children in low resource settings.","authors":"Vijeyta Dahiya, Naina Picardo, Ramanadham Thejesh, Mary John, Ajoy Mathew Varghese","doi":"10.3233/PRM-220052","DOIUrl":"10.3233/PRM-220052","url":null,"abstract":"<p><strong>Objective: </strong>Diagnosis and management of swallowing problems in children is crucial for improvement of their health status and quality of life. This study aimed to determine the accuracy of clinical feeding assessment (CFA) as a screening test to detect aspiration in children using fibreoptic endoscopic evaluation of swallowing (FEES) as the gold standard.</p><p><strong>Methods: </strong>A prospective study of 80 children aged below 16 years who were referred to a paediatric otolaryngology clinic for swallowing complaints was completed from 2019 to 2020. Swallowing was assessed by both CFA and FEES. Presence of any one of the following symptoms was considered positive for aspiration in CFA: cough, wet vocal quality, and respiratory distress. Aspiration on FEES was measured using the Penetration Aspiration Scale. The clinical predictors of aspiration were analysed.</p><p><strong>Results: </strong>The majority of the children (78.8%) had an associated neurological condition, with cerebral palsy being the most common. CFA had a sensitivity ranging from 80% to 100% and a specificity ranging from 68% to 79% for predicting true aspiration for different food consistencies. The significant risk factors predicting aspiration (p value <0.05) were history of prior intubation (p = 0.009), history of nasal regurgitation (p = 0.002) and spasticity on examination (p = 0.043).</p><p><strong>Conclusion: </strong>This study showed that CFA can be used as a screening test in evaluation of paediatric dysphagia. In those with negative CFA, the chances of aspiration are less while those with positive CFA need further evaluation. In addition, the availability and cost-effectiveness of the test make it a good tool for screening aspiration in low-resource settings.</p>","PeriodicalId":16692,"journal":{"name":"Journal of pediatric rehabilitation medicine","volume":" ","pages":"211-219"},"PeriodicalIF":0.8,"publicationDate":"2024-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11307002/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"41115608","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":"Medical delivery without representation?: Examining disability representation within the healthcare community.","authors":"Justin Ramsey, Christopher Raffi Najarian","doi":"10.3233/PRM-240013","DOIUrl":"10.3233/PRM-240013","url":null,"abstract":"<p><p>Individuals with disabilities comprise approximately 13% of the overall population. This editorial explores recent events that may involve ableism. The recent COVID pandemic created a rapid need and pressure to develop ventilator allotment policies. Many concluded several state policies were discriminatory in nature toward persons with disabilities (PWD). Lack of disability representation in medical fields may contribute to such discrimination within state and hospital medical policies. The underrepresented numbers of PWD in medical fields are explored. We conclude that improved education for all medical providers is needed. Possible strategies for improving healthcare representation and delivery within the United States are discussed.</p>","PeriodicalId":16692,"journal":{"name":"Journal of pediatric rehabilitation medicine","volume":" ","pages":"3-7"},"PeriodicalIF":0.8,"publicationDate":"2024-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10977394/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"140189850","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":"Outcomes following intensive day rehabilitation for young people in Western Australia.","authors":"Irwin Gill, Sue-Anne Davidson, Paul G Stevenson, Rae Robinson, Dayna Pool, Jane Valentine","doi":"10.3233/PRM-220102","DOIUrl":"10.3233/PRM-220102","url":null,"abstract":"<p><strong>Objective: </strong>Intensive rehabilitation aims to improve and maintain functioning in young people who experience disability due to illness or injury. Day rehabilitation may have advantages for families and healthcare systems over inpatient models of rehabilitation.</p><p><strong>Methods: </strong>This study evaluated the goals and outcomes of a cohort of young people in Western Australia who attended a specialist intensive day rehabilitation programme (\"iRehab\") at Perth Children's Hospital. Analysis of the iRehab service database was performed. Rehabilitation goals and outcomes were recorded as per the Canadian Occupational Performance Measure (COPM), Children's Functional Independence Measure (WeeFIM), and Goal Attainment Scale (GAS).</p><p><strong>Results: </strong>There were 586 iRehab admissions between August 11, 2011, and December 31, 2018. Admissions were divided by diagnosis: Cerebral Palsy (228, 38.5%), Acquired Brain Injury (125, 21.3%), Spinal Cord Disorders (91, 15.5%), and Other (141, 24.2%). Mean COPM Performance increased by 2.78 points from admission to discharge (95% CI 2.58 to 2.98, p < 0.001). Mean COPM Satisfaction was 3.29 points higher at discharge than admission (95% CI 3.07 to 3.51, p < 0.001). Mean total WeeFIM score improved by 6.51 points between admission and discharge (95% CI 5.56 to 7.45, p < 0.001), and by 3.33 additional points by six months post discharge (95% CI 2.14 to 4.53, p < 0.001). Mean GAS T-scores increased by 27.85 (95% CI 26.73 to 28.97, p < 0.001) from admission to discharge, and by 29.64 (95% CI 28.26 to 31.02, p < 0.001) from admission to six months post discharge, representing improvement consistent with team expectations.</p><p><strong>Conclusion: </strong>This study describes a model by which intensive rehabilitation can be delivered in a day rehabilitation setting. A diverse population of young people who experienced disability achieved significant improvements in occupational performance, independence, and goal attainment after accessing intensive day rehabilitation. Improvements were measured in all diagnostic subgroups and were maintained six months after discharge.</p>","PeriodicalId":16692,"journal":{"name":"Journal of pediatric rehabilitation medicine","volume":" ","pages":"167-178"},"PeriodicalIF":0.8,"publicationDate":"2024-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11307091/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"138805302","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":"Qualitative feedback from caregivers in a multidisciplinary pediatric neuromuscular clinic.","authors":"Skylar M Hess, Dorothy Adu-Amankwah, Cordelia R Elaiho, Liam R Butler, Sheena C Ranade, Brijen J Shah, Kristin Shadman, Robert Fields, Elaine P Lin","doi":"10.3233/PRM-230011","DOIUrl":"10.3233/PRM-230011","url":null,"abstract":"<p><strong>Objective: </strong>This study explored family satisfaction and perceived quality of care in a pediatric neuromuscular care clinic to assess the value of the multidisciplinary clinic (MDC) model in delivering coordinated care to children with neuromuscular disorders, such as cerebral palsy.</p><p><strong>Methods: </strong>Caregivers of 22 patients were administered a qualitative survey assessing their perceptions of clinic efficiency, care coordination, and communication. Surveys were audio-recorded and transcribed. Thematic analysis was completed using both deductive and inductive methods.</p><p><strong>Results: </strong>All caregivers reported that providers adequately communicated next steps in the patient's care, and most reported high confidence in caring for the patient as a result of the clinic. Four major themes were identified from thematic analysis: Care Delivery, Communication, Care Quality, and Family-Centeredness. Caregivers emphasized that the MDC model promoted access to care, enhanced efficiency, promoted provider teamwork, and encouraged shared care planning. Caregivers also valued a physical environment that was suitable for patients with complex needs.</p><p><strong>Conclusion: </strong>This study demonstrated that caregivers believed the MDC model was both efficient and convenient for pediatric patients with neuromuscular disorders. This model has the potential to streamline medical care and can be applied more broadly to improve care coordination for children with medical complexity.</p>","PeriodicalId":16692,"journal":{"name":"Journal of pediatric rehabilitation medicine","volume":" ","pages":"237-246"},"PeriodicalIF":0.8,"publicationDate":"2024-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11306999/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"140012779","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":"Factors influencing caregiver buy-in to early intervention physical therapy.","authors":"Andrea Fergus, Carlee Wyker, Nicole Heyl, Tayler Lewis, Katherine Hartsook","doi":"10.3233/PRM-230025","DOIUrl":"10.3233/PRM-230025","url":null,"abstract":"<p><strong>Objective: </strong>The family-centered care framework of Early Intervention (EI) has shifted the focus toward caregiver engagement, but the underlying processes that build this are unknown. The aims of this study were 1) to describe the process of caregiver engagement in therapy and (2) to identify factors perceived to influence caregiver buy-in, confidence, and engagement in EI.</p><p><strong>Methods: </strong>This preliminary descriptive study utilized quantitative questionnaires and qualitative semi-structured interviews of EI participants (23 caregivers and four physical therapists). Interviews were transcribed and theme coded until saturation was achieved and a concept map was developed.</p><p><strong>Results: </strong>All caregivers believed that their children benefited from EI, that they were empowered and confident in caring for their children, and their quality of life improved based on the quantitative data. The qualitative data revealed that building a rapport and therapeutic relationship is the foundation to developing buy-in. Reciprocal communication is critical to the relationship and the buy-in. Caregiver knowledge and awareness of progress foster caregiver buy-in and confidence once the relationship is established.</p><p><strong>Conclusion: </strong>Improved understanding of the factors influencing the development of buy-in will provide a framework for the clinician to enhance caregiver buy-in. Enhanced buy-in may promote parental engagement and improved outcomes for the child and family.</p>","PeriodicalId":16692,"journal":{"name":"Journal of pediatric rehabilitation medicine","volume":" ","pages":"221-235"},"PeriodicalIF":0.8,"publicationDate":"2024-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11307095/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"139513090","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":"JPRM vol. 17 issue 1 Opening Editorial.","authors":"Heakyung Kim, Christopher Raffi Najarian, Justin W Ramsey, Sruthi Pandipati Thomas","doi":"10.3233/PRM-249002","DOIUrl":"10.3233/PRM-249002","url":null,"abstract":"","PeriodicalId":16692,"journal":{"name":"Journal of pediatric rehabilitation medicine","volume":"17 1","pages":"1"},"PeriodicalIF":1.9,"publicationDate":"2024-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10977388/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"140326718","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":"Treatment of oromandibular dystonia with botulinum toxin A improves apnea in a teenager with quadriplegic cerebral palsy: A case report.","authors":"Jeremy Roberts, Amy Tenaglia, Elisabeth Bellissimo, Heakyung Kim","doi":"10.3233/PRM-220105","DOIUrl":"10.3233/PRM-220105","url":null,"abstract":"<p><p>This report describes a 15-year-old female with known spastic and dystonic quadriplegic cerebral palsy (CP), Gross Motor Function Classification System IV, and obstructive sleep apnea (OSA). She experienced decreased apneic episodes after receiving onabotulinumtoxin A (BoNT-A) injections for the treatment of oromandibular dystonia (OMD). After her OSA diagnosis, she initially received injections to the bilateral masseter and temporalis muscles with no effect on the frequency of nightly apneic episodes. Subsequently, the bilateral lateral pterygoid muscles were added and she was later noted to have fewer apneic episodes overnight. This case report describes the use of BoNT-A in the muscles of mastication for management of OMD and the ensuing improvement in OSA in a teenager with CP.</p>","PeriodicalId":16692,"journal":{"name":"Journal of pediatric rehabilitation medicine","volume":" ","pages":"125-129"},"PeriodicalIF":0.8,"publicationDate":"2024-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10977355/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"9900564","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":"Exploring the sexual experiences and challenges of individuals with cerebral palsy.","authors":"Amber Newell, Neal Liang, Jan Moskowitz, Nancy Lee, Xiaoyu Norman Pan, Heakyung Kim","doi":"10.3233/PRM-240006","DOIUrl":"10.3233/PRM-240006","url":null,"abstract":"<p><strong>Purpose: </strong>Cerebral palsy (CP) is a prevalent motor disorder affecting children, with evolving demographics indicating an increasing survival into adulthood. This shift necessitates a broader perspective on CP care, particularly in addressing the often overlooked aspect of sexuality. The purpose of this study was to investigate experiences of, challenges with, and related factors of sexuality and intimacy that people with CP are facing.</p><p><strong>Methods: </strong>This was a descriptive and cross-sectional single institution survey among individuals with CP, ages 18 to 65, who had the ability to independently complete an online survey.</p><p><strong>Results: </strong>A total of 40 respondents participated in the survey (Gross Motor Function Classification System [GMFCS] level I/II, 32.5%; III, 35%; IV, 32.5%). Of those, 45% were partnered, 60% had past sexual experience, 47.5% were currently sexually active at the time of submitting the survey, 80% had masturbation experience, and 45.8% believed it had positive effect on their self-esteem. Only 10% received sex education tailored for people with disability, whereas school (72.5%) and internet (35%) were the most common sources of sex education. Muscle spasms, positioning difficulty, and pain/discomfort were the most common physical challenges experienced during intimate activity amongst all function stratifications. Stratification analysis showed that, compared to higher functioning respondents, a smaller proportion of lower functioning respondents were partnered (GMFCS IV, 23.1%; quadriplegic, 31.6%), had past or current sexual experience (GMFCS IV, 44.4%, 36.4%; quadriplegic, 42.1%, 26.3%, respectively), and had masturbation experience (GMFCS IV, 61.5%); Also, they had worse Quality of Life Scale scores on average (GMFCS IV, 88.4; quadriplegic, 88.3) and a higher rate of reported positive effects of sexual experiences on self-esteem than negative (GMFCS IV, 38.5%; quadriplegic, 35%).</p>","PeriodicalId":16692,"journal":{"name":"Journal of pediatric rehabilitation medicine","volume":" ","pages":"35-45"},"PeriodicalIF":0.8,"publicationDate":"2024-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10977348/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"140189849","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}