Journal of Pediatric Rehabilitation Medicine - Volume 13, issue 3
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The Journal of Pediatric Rehabilitation Medicine (JPRM): An Interdisciplinary Approach is designed to parallel the multidisciplinary teams caring for children, adolescents and adults with childhood-onset physical disabilities and complex care needs worldwide. Published quarterly, topics include, and are not limited to, cerebral palsy, traumatic brain injury, spinal cord injury, spina bifida, limb deficiency, muscular dystrophy, stroke, cancer, developmental delays, and rare disorders. Furthermore, the journal welcomes papers dedicated to pediatric rehabilitation from a global health perspective.
The aim of JPRM is to engage a diverse group of international experts with the goal of providing readers with comprehensive information regarding children and adolescents requiring rehabilitation. JPRM brings together specialists from medicine, nursing, psychology, social work, nutrition, child life, family centered care, and occupational, physical, and speech therapy. For manuscript submissions, authorship involving at least two different specialties is encouraged, although not required, to facilitate a transdisciplinary and collaborative approach. Manuscripts are blinded and peer reviewed including biostatistical analysis. Authors are invited to submit original research, systematic and scoping reviews, guidelines, protocols, care pathways, case reports, book reviews, commentaries, editorials, and dates for future conferences.
Abstract: Telemedicine has emerged as a vital tool for continuing to provide therapy to children with disabilities throughout the course of the COVID-19 pandemic. While video visits have certain advantages, such as the ability to see the children in their home, they also have potential drawbacks, as some exam maneuvers and objective measurement tools cannot be performed virtually. The increased utilization of telemedicine also raises questions about access to care. Video visits can remove the transportation and time barriers that some families face. However, they raise new barriers, such as a requirement for home internet access and insurance coverage, that may…negatively impact access to care for certain patients. Moving forward, a combination of clinic and video visits in pediatric rehabilitation may be the best way to harness the advantages of both modalities while minimizing their disadvantages. Our article discusses issues relating to rehabilitation therapy delivered via virtual visits, but further study is needed to examine whether video visits achieve similar outcomes to clinic visits.
Keywords: Teletherapy, video visits, disabilities, pediatrics, access to care, pandemic, COVID-19
Abstract: The novel coronavirus, the cause of COVID-19, has sent shockwaves throughout the world, shuttered many businesses essentially overnight, and has left billions living worldwide in quarantine. Not surprisingly, the health care industry has been significantly affected by the COVID-19 pandemic. This article focuses on how COVID-19 has influenced the Office for Civil Rights’ (OCR’s) enforcement of the Health Insurance Portability and Accountability Act of 1996 (HIPAA) Privacy and Security Rules as they relate to telehealth remote communications, and opines about whether the COVID-19-related changes to HIPAA Privacy Rule and Security Rule enforcement might last beyond the current crisis.
Keywords: COVID-19, safety protocols, construction, industry
Abstract: The COVID-19 era exposes what was already a crisis in the medical profession: structural racism, ageism, sexism, classism, and ableism resulting in healthcare disparities for Persons with Disabilities (PWD). Early research highlights these disparities, but we do not yet know the full impact of this pandemic on PWD. Over the last 20 years, many medical schools have attempted to develop disability competency trainings, but discrimination and inequities remain, resulting in a pervasive distrust of medicine by the disability community at large. In this commentary, we suggest that disability competency is insufficient because the healthcare disparities experienced by PWD are not…simply a matter of individual biases, but structural and systemic factors requiring a culture shift in the healthcare professions. Recognizing that disability is a form of diversity that is experienced alongside other systemic disadvantages like social class, race, age, sex, gender identity, and geographic location, we explore the transformative potential of disability conscious medical education, training, and practice that draws on insights from intersectional disability justice activism. Disability conscious medicine is a novel approach, which improves upon competency programs by utilizing disability studies and the principles of disability justice to guide us in the critique of norms, traditions, and institutions to more fully promote the respect, beneficence, and justice that patients deserve.
Keywords: Disability, disability justice, medical training, diversity, COVID-19
Abstract: COVID-19, the respiratory and frequently systemic disease caused by the novel SARS-COV-2 virus, was first recognized in December 2019 and quickly spread to become a pandemic and world-wide public health emergency over the subsequent 3–4 months. While COVID-19 has a very low morbidity rate across approximately 80% of the population, it has a high morbidity and mortality rate in the remaining 20% of the population. 1 These numbers have put a significant strain on medical systems around the world. Patients with neuromuscular diseases such as those with Duchenne muscular dystrophy (DMD) and spinal muscular atrophy (SMA), tend…to be more medically fragile and have higher health care needs than the general population. Respiratory insufficiency, cardiac disease, obesity, and immunocompromised status due to chronic steroid treatments in certain patient populations with neuromuscular conditions are specific risk factors for severe COVID-19 disease. In general, the pediatric population has shown to be less severely impacted with lower infection rates and lower morbidity and mortality rates than the adult population, however, as expected, children with underlying medical conditions are at higher risk of morbidity from COVID-19 than their peers. 2 Many patients with neuromuscular disease also rely heavily on caregiver support through their lifetime and thus maintaining the health of their primary caregivers is also a significant consideration in the health and well-being of the patients. This paper will address routine and emergency medical care, rehabilitation services, and other considerations for the pediatric patient with a neuromuscular condition during the COVID-19 pandemic.
Keywords: Duchenne muscular dystrophy and COVID-19, SARS-CoV-2 and muscular dystrophy, rehabilitation and COVID-19, spinal muscular atrophy and COVID-19, telehealth and muscular dystrophy, teletherapy
Abstract: Children with disabilities are disproportionately impacted by COVID-19 and the containment response. Their caregivers must now adapt to increased stressors such as lack of access to needed therapies, medical supplies, and nursing care. Prior to COVID-19 these families were already marginalized, and this has only worsened during the pandemic. As a vulnerable population, children with disabilities have not been the focus of much discussion during the pandemic, likely because the disease disproportionately impacts older individuals. Nonetheless, children with disabilities should be a focus of evaluation and intervention to mitigate the negative consequences of COVID-19 and the resulting containment strategies. Their…needs should be included in future crisis planning, as well. In order to raise awareness of pediatric rehabilitation professionals, health care administrators, policy makers, and advocates, this manuscript provides a discussion of the following topics: the immediate and ongoing impacts on children with disabilities and their families, the ethical concerns and implications of triage protocols for scarce resources that consider disability in their scoring systems, and optimizing medical care and educational needs in the time of COVID.
Keywords: Children with disabilities, COVID-19, health care inequities, Individualized Education Program, discrimination
Abstract: Over 80% of the children in the world have had their education impacted by COVID-19. For children with disabilities who receive special education services, access to in-person education and other resources at school is particularly important. The American Academy of Pediatrics advocates for students to attend school in person, without specifics for how children with disabilities can safely return to school. To appropriately plan and accommodate children with disabilities we must prioritize safety, allow for adherence to the Individuals with Disabilities Education Act, and preserve essential school staff. The less cumbersome default of confining students with disabilities to home is…not acceptable. We provide an outline describing why Individual Education Plans and 504 plans are important, how they are related to the COVID-19 pandemic, and recommendations for measures to help with safe return to school for children with disabilities.
Keywords: Disability pediatric rehabilitation, children, school, education, COVID-19, health equity
Abstract: More than six months after the Shelter-in-Place executive order in the San Francisco Bay Area, this paper analyzes how an essential public works construction project put a COVID-19 safety protocol in place. It describes a four-step protocol, details challenges and successes of implementation, and provides insight for construction as well as other industries, including healthcare.
Keywords: COVID-19, safety protocols, construction, industry