Journal of pediatric rehabilitation medicine最新文献

{"title":"Using technology to enhance prevention of pressure injuries in the spina bifida population.","authors":"Holly Kirkland-Kyhn, Tuba Sengul, Dilek Yilmaz Akyaz","doi":"10.1177/18758894251316073","DOIUrl":"10.1177/18758894251316073","url":null,"abstract":"<p><p>Patients with spina bifida (SB) are highly susceptible to pressure injuries (PIs) due to limited mobility and sensory deficits, and they may occur during multiple surgical procedures. The article highlights that PIs, which significantly increase hospital costs and extend patient stays, can be prevented mainly through evidence-based interventions. One of the critical technologies used at this stage is pressure mapping to monitor and optimize pressure distribution on surfaces, whether lying or seated, particularly during prolonged medical procedures. Additionally, the article emphasizes the importance of educating families and caregivers about early signs of PIs, photography, using electronic health records for tracking, and effective home care strategies to prevent these injuries post-discharge. Future research should investigate how to enhance prevention methods in hospital settings, especially for patients undergoing surgeries or other lengthy procedures. Overall, the article underscores the critical role of early identification of risk, intervention, and technological support in reducing the incidence and impact of PIs in patients with SB.</p>","PeriodicalId":16692,"journal":{"name":"Journal of pediatric rehabilitation medicine","volume":" ","pages":"57-60"},"PeriodicalIF":0.8,"publicationDate":"2025-02-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143433354","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}

{"title":"The process of adaptation: Parents' journey navigating their child's chronic health condition diagnosis.","authors":"Amy L Thompson, Sarah L Smith","doi":"10.1177/18758894241292147","DOIUrl":"10.1177/18758894241292147","url":null,"abstract":"<p><p>PurposeThis study aimed to examine parents' perceptions and experiences navigating their child's chronic health condition diagnosis.MethodsResearchers used a qualitative research design, applying a phenomenological approach to interview 15 parents of children with a chronic health condition. Researchers analyzed verbatim transcripts to develop themes and report strategies that might inform care of the child and parents.ResultsParents described a fluid experience navigating their child's diagnosis that involved five interwoven elements: grief, anxiety, unknowing, responsibility, and positivity. Mediating processes of time and experience supported adaptation toward positivity. Experiences appeared to transcend child-specific diagnoses suggesting a common process of parent adaptation to a child's diagnosis.ConclusionFindings elucidate parents' lived experiences surrounding their child's diagnosis of a chronic health condition. Parents are inextricable from their child's care; thus, findings may garner knowledge supporting providers to employ strategies that support favorable outcomes for both children and parents.</p>","PeriodicalId":16692,"journal":{"name":"Journal of pediatric rehabilitation medicine","volume":"18 1","pages":"78-86"},"PeriodicalIF":0.8,"publicationDate":"2025-02-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143735864","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}

{"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":"10.3233/PRM-230063","url":null,"abstract":"<p><p>CASE DESCRIPTIONA 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.DISCUSSIONProcedural 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.CONCLUSIONSAttempts 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":"23-25"},"PeriodicalIF":0.8,"publicationDate":"2025-02-01","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}

{"title":"Pediatric physical therapy during a pandemic: Assessing perceptions of providing services through telehealth.","authors":"Katelyn McNamara, Deborah E Thorpe","doi":"10.1177/18758894251315639","DOIUrl":"10.1177/18758894251315639","url":null,"abstract":"<p><p>PurposeThis study aimed to identify the perceptions of pediatric physical therapists, identifying barriers and facilitators to providing telehealth services during the COVID-19 pandemic.MethodsUsing a mixed methods design, an online, national survey gathered demographics and participants' perceptions.ResultsA total of 165 pediatric physical therapists participated in the study. Sixty-four percent of respondents rated their pre-pandemic perception of telehealth services as \"somewhat\" to \"very\" negative. After utilizing telehealth, 66% of therapists reported perceptions of telehealth as \"somewhat\" or \"very\" positive. Barriers were 1) poor patient and parent participation and 2) technology issues. Facilitators were 1) hands-on involvement, 2) ability to share information, and 3) ability to use items in the home. Predominate themes to open-ended responses further elucidated pre- and post-pandemic telehealth perceptions.ConclusionAfter implementing telehealth services during COVID- 19, most therapists indicated their perceptions of telehealth were somewhat or very positive.</p>","PeriodicalId":16692,"journal":{"name":"Journal of pediatric rehabilitation medicine","volume":"18 1","pages":"87-93"},"PeriodicalIF":0.8,"publicationDate":"2025-02-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143735749","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}

{"title":"Development and content validation of a survey assessing domains of sexual and reproductive health in adults with spina bifida.","authors":"Betsy Hopson, Ching Man Carmen Tong, Courtney Streur, Brandon G Rocque, Jeffrey Blount, Nataliya Ivankova, Donald H Lein","doi":"10.1177/18758894241304357","DOIUrl":"10.1177/18758894241304357","url":null,"abstract":"<p><p>PurposeIndividuals with spina bifida (SB) often face substantial gaps in sexual and reproductive health (SRH) knowledge leading to low use of contraception, poor utilization of preventative sexual health care, unintended pregnancies, missed opportunities to pursue their SRH goals, and increased risk of abuse and coercion. Validated questionnaires are needed to reliably test and track the SRH and self-efficacy of adults with SB. This study aimed to develop a survey with content validity to assess five SRH domains in adults with SB.MethodsAn initial survey was informed by a targeted literature review as well as stakeholder and expert opinions. Social cognitive theory's self-efficacy concept, known for its predictive power in behavior change among those with physical disabilities, guided its development. The survey items were iteratively reviewed online by national sexual health experts using a modified Delphi method, assessing item clarity, relevance, and comprehensiveness. Then, cognitive interviews of the refined instrument were conducted with five adults with SB to analyze acceptance and understanding.ResultsOf the 26 potential panel members invited to participate, 22 (85%) responded and agreed to participate. There were seven urologists (two adult, five pediatric), six developmental pediatricians, six registered nurses from SB clinics, two physiatrists, and one medicine-pediatrics trained internist. Consensus was achieved after three rounds for 100 survey items. Following each round, items were refined through researcher consensus until the content validity index was met (agreement = 0.8-1.0) for each question, ensuring all domains were adequately represented. These domains included sexual knowledge/education, sexual practice, sexual safety/risk profile, history of abuse, and perceived self-efficacy.ConclusionContent validity, clarity, and functionality of a novel survey that probes five domains of SRH in adults with SB was established. The survey can be utilized in both research and clinical settings to assess baseline SRH knowledge, identify risky behaviors, and screen for sexual abuse.</p>","PeriodicalId":16692,"journal":{"name":"Journal of pediatric rehabilitation medicine","volume":"17 4","pages":"389-396"},"PeriodicalIF":0.8,"publicationDate":"2024-12-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143649447","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}

{"title":"Glass half full: Non-invasive bladder biosensors for urinary volume monitoring in the neurogenic pediatric population.","authors":"Serena Ly, Eric A Kurzrock","doi":"10.1177/18758894241304358","DOIUrl":"10.1177/18758894241304358","url":null,"abstract":"<p><p>PurposeThe goal was to elucidate and present the current landscape of bladder biosensor technology for urinary volume monitoring in the management of neurogenic bladder. The need for such technology in managing neurogenic bladder in the pediatric population is discussed, as well as the challenges researchers currently face in advancing individual technologies.MethodsA literature review including 43 articles discussing bladder biosensor and related technology for continuous urinary volume monitoring was conducted. Articles ranged from original research studies to systematic reviews.ResultsVarious continuous bladder urine volume monitoring devices have been proposed and evaluated. These devices utilize principles of ultrasound, electrical impedance tomography, near infrared spectroscopy, pressure biosensor implantation, microwave radar, and frequency modulated continuous wave radar. While several studies have shown promise in correlating device measurements to bladder urinary volume changes, ultimately researchers have not been able to surmount the challenges of optimizing configuration of device components and the impacts of dynamic position, posture, body habitus, bladder location, and urine biochemical properties that demonstrate high interpersonal variability.ConclusionThe need for developing bladder biosensor technology to provide continuous urine volume monitoring in patients with neurogenic bladder remains great. Transitioning from a time-based clean intermittent catheterization approach to a volume-based approach would possibly improve neurogenic bladder patients' quality of life. While technologies face limitations that have stalled translation to clinical practice, there is potential to build upon past work to address current challenges and meet this ever-pressing need.</p>","PeriodicalId":16692,"journal":{"name":"Journal of pediatric rehabilitation medicine","volume":"17 4","pages":"420-425"},"PeriodicalIF":0.8,"publicationDate":"2024-12-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143649448","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}

{"title":"Thanks to our reviewers and corresponding editors!","authors":"","doi":"10.1177/18758894241309420","DOIUrl":"https://doi.org/10.1177/18758894241309420","url":null,"abstract":"","PeriodicalId":16692,"journal":{"name":"Journal of pediatric rehabilitation medicine","volume":"17 4","pages":"432-433"},"PeriodicalIF":0.8,"publicationDate":"2024-12-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143649452","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}

{"title":"Paying to pee: A national survey of urinary catheter users' costs and coverage.","authors":"Maryellen S Kelly, Hannah Damico, Dawne Widener-Burrows, Judy Thibadeau, Kimberly A Beer, Alexandra Bennewith, Jane M Wierbicky, Sara Struwe","doi":"10.1177/18758894241299901","DOIUrl":"10.1177/18758894241299901","url":null,"abstract":"<p><p>PurposeThis study aimed to survey individuals who regularly use urinary catheters to understand health insurance coverage and out-of-pocket costs they experience to advocate for health-policy change.MethodsSurvey content was generated by non-profit organizations and programmed into Qualtrics. It was distributed in Spanish and English via email and social media accounts. The survey was open from 1/19/21-2/15/21 and only included individuals who either used catheters themselves or were the care partner of an individual who used catheters. For non-normally distributed data, log-transformed confidence intervals were used to achieve approximately normal distributions; data was then transformed to be analyzed using an approximate 95% confidence interval (CI), and a Mann-Whitney U test was completed to test the equality of medians between groups. Associations between catheter types and out-of-pocket costs were performed using the Kruskal-Wallace non-parametric test.ResultsOne thousand two hundred and forty seven individuals responded. An equal percentage (43%) of catheter users were covered by public/government or private insurance plans only; 14% had both. Among those with public/government insurance, 8% reported their insurance did not cover any catheter costs versus 17% of those with private insurance. The median yearly out-of-pocket costs for privately insured respondents who paid anything was $1200 compared to $540 for those with public/government insurance.ConclusionOut-of-pocket expenses for catheters vary. Those with public/government insurance pay less out-of-pocket.</p>","PeriodicalId":16692,"journal":{"name":"Journal of pediatric rehabilitation medicine","volume":"17 4","pages":"397-402"},"PeriodicalIF":0.8,"publicationDate":"2024-12-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143649450","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}

{"title":"Advances in spina bifida care: The global journey toward dignity, inclusion, and innovation.","authors":"Jonathan Castillo, Judy K Thibadeau, Tim Brei, Heidi Castillo","doi":"10.1177/18758894241309209","DOIUrl":"10.1177/18758894241309209","url":null,"abstract":"<p><p>For nearly a decade, the special issue for spina bifida (SB) in the Journal of Pediatric Rehabilitation Medicine (JPRM) has become an epicenter for qualitative, state of the art, and innovative SB research. It has been noted that the concept of \"blue marble health,\" a policy framework to illustrate trends in the geographic distribution of neglected diseases affecting at-risk populations, may also have a place in illustrating the SB care paradigm in high-income countries such as those in North America and Europe. Concurrently, JPRM has dawned to provide insight into SB care worldwide, both in the Global North as in the Global South. Also in recent years, the <i>Guidelines for the Care of People with Spina Bifida</i>, a product of the Spina Bifida Association (SBA) Collaborative Care Network cooperative agreement with the National Center on Birth Defects and Developmental Disabilities in the Centers for Disease Control and Prevention, have mapped the advance. The SBA continues to catalyze open and in-person dialogue among clinicians and investigators. The 2025 Spina Bifida Clinical Care Meeting, hosted by Shriners Children's Northern California, included the involvement of adult members of the SB community, parents, clinicians, and researchers. Subsequently, this special issue includes state of the art articles initially presented at this conference. Now it is up to all of us to uphold the standard as we embark onto equitable and sustainable development of opportunities for those affected by SB across our diverse and global community.</p>","PeriodicalId":16692,"journal":{"name":"Journal of pediatric rehabilitation medicine","volume":"17 4","pages":"387-388"},"PeriodicalIF":0.8,"publicationDate":"2024-12-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143649413","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}

{"title":"Award Announcements.","authors":"Elaine L Pico","doi":"10.1177/18758894241309211","DOIUrl":"https://doi.org/10.1177/18758894241309211","url":null,"abstract":"","PeriodicalId":16692,"journal":{"name":"Journal of pediatric rehabilitation medicine","volume":"17 4","pages":"431"},"PeriodicalIF":0.8,"publicationDate":"2024-12-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143649416","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}