Component Of Care For Children Research Articles

Establishment of Twinning Partnership to Improve Pediatric Radiotherapy Outcomes Globally.

Pediatric radiotherapy is a necessary and challenging component of oncologic care for children in low- and middle-income countries (LMICs). Collaboration between institutions in LMICs and high-income countries (HICs) has been shown to be effective in improving oncologic treatment outcomes; however, literature regarding pediatric radiotherapy twinning partnerships is limited. Emory University has a long-standing twinning collaboration with Tikur Anbessa Specialized Hospital (TASH) for certain medical specialties. After securing institutional funding, a faculty member and a resident from the Emory University Department of Radiation Oncology set out to establish a twinning program with TASH for pediatric radiotherapy. Emory and TASH faculty and residents established initial communications virtually via email and video correspondence. TASH residents and faculty completed surveys regarding pediatric radiotherapy institutional and educational needs to outline goals of collaboration. Five lectures and case-based practicums were identified focused on Wilms tumor, medulloblastoma, rhabdomyosarcoma, Hodgkin lymphoma, and palliative radiotherapy. The Emory team then conducted a visit to TASH during which lectures and practicums were delivered. The Emory team directly observed and guided simulation and treatment planning procedures. TASH residents practiced decision making, simulation, contouring, and field placement for Wilms tumor cases on the basis of didactics and feedback provided by the Emory team. Additionally, a needs assessment regarding pediatric oncologic resources was completed. Clinical care pathways and standard operating procedures were drafted by collaborators. Virtual peer-review sessions were established to continue collaborations abroad and plan for next in-person visit. Collaborative efforts by global experts have helped to establish and improve treatment protocols for childhood cancer. The presented twinning experience may serve as a model for other LMIC and HIC centers for establishing similar partnerships.

Nutrition management of pediatric patients undergoing hematopoietic stem cell transplantation: Guidelines, gaps, and research.

Medical nutrition therapy (MNT) is a key component of supportive care for children undergoing hematopoietic stem cell transplantation. During the transplant process, several complications and side effects may be encountered that require alteration of the nutrition support, interventions, and monitoring provided. The focus of this review is to discuss current guidelines and research for the provision of MNT to these patients, along with recommendations on how to bridge the gap in MNT knowledge.

Oral and dental considerations in pediatric cancers.

Oral health care is an integral component of interprofessional collaborative care for children and adolescents diagnosed with cancer. The current review highlights the phases of cancer therapy when dental interventions and palliative care are necessary for children diagnosed with cancer. Contemporary research and review articles pertinent to the oral and dental complications during pediatric cancer therapy and late effects in pediatric cancer survivors were identified by PubMed/MEDLINE search. Best practice guidelines set forth by specialty organizations were also included. The literature search was limited to articles published in the English language. Baseline oral and dental health assessment should occur before initiation of cancer therapy to prevent debilitating complications during the immunosuppressed phase. Counseling on preventive oral health practices is imperative during cancer treatment. Ideally, all dental treatment should be completed before initiation of immunosuppressive therapy. Palliative care and treatment for mucositis, opportunistic oral infections, pain, and other oral complications associated with cancer therapy should be provided as necessary. Survivors of childhood cancers present with unique craniofacial and dental anomalies, dependent on the type of cancer treatment and age at the time of treatment. Pediatric dentists and pediatric oncology teams work collaboratively to screen for and treat dental and oral diseases. As the survival rates of childhood cancers improve, it is essentialfor the dental profession to provide the individualized care necessary for this vulnerable population. The oral health profession also reinforces health practices congruent with cancer prevention and cancer screening.

Advanced care planning 5years on: An observational study of multi-centred service development for children with life-limiting conditions.

The purpose of this study was to compare how planning has developed over the 5years across a range of children's health care services in a single U.K. city. Advanced planning for end of life care (EOLC) is an essential component of care for children with life-limiting and life-threatening (LLLT) conditions. We report the findings of a follow-up study (R2) completed 5years after the initial review (R1). Documented advanced care planning (ACP) was measured against published children's palliative care standards. We used a manual retrospective review of health care records, using focused data collection. Inclusion criteria were children who died before the age of 18years, as a consequence of an LLLT condition, over an 18-month period and had lived locally to a regional children's hospital. The first review (R1) included 48 patients with 114 health care records: median age at death 0years (range 0 to 18years). The follow-up review (R2) included 47 patients, with 80 health care records: median age at death 2years (range 0 to 17years). The proportion of records containing evidence of a prognostic discussion had risen from 73% (R1) to 91% (R2), p<0.005. The proportion of health care records with ACP was consistent between R1 and R2 (75% and 72%, respectively). An ACP tool was found to be in regular use in R2 compared with no examples in R1. The acute hospital trust plans were more detailed in R2 than R1. The proportion of cases where preferred location of death matched actual location was stable, around half. EOLC conversations increased over the 5years studied. In the acute hospital trust, there is evidence of a better quality ACP although quantity is stable: enabled by the implementation of an ACP tool and education programme. Challenges remain in engaging children and young people in advanced planning.

Development and Implementation of a Pediatric Palliative Care Program in a Developing Country

Palliative care is recognized as an important component of care for children with cancer and other life-limiting conditions. In resource limited settings, palliative care is a key component of care for children with cancer and other life-limiting conditions. Globally, 98% of children who need palliative care live in low- or middle-income countries, where there are very few palliative care services available. There is limited evidence describing the practical considerations for the development and implementation of sustainable and cost-effective palliative care services in developing countries. Our aim is to describe the key considerations and initiatives that were successful in planning and implementing a hospital-based pediatric palliative care service specifically designed for a resource-limited setting. Bangabandu Sheikh Mujib Medical University (BSMMU) is a tertiary referral hospital in Bangladesh. Local palliative care services are very limited and focused on adult patients. In partnership with World Child Cancer, a project establishing a pediatric palliative care service was developed for children with cancer at BSMMU. We describe four key elements which were crucial for the success of this program: (1) raising awareness and sensitizing hospital administrators and clinical staff about pediatric palliative care; (2) providing education and training on pediatric palliative care for clinical staff; (3) forming a pediatric palliative care team; and (4) collecting data to characterize the need for pediatric palliative care. This model of a hospital-based pediatric palliative care service can be replicated in other resource-limited settings and can be expanded to include children with other life-limiting conditions. The development of pilot programs can generate interest among local physicians to become trained in pediatric palliative care and can be used to advocate for the palliative care needs of children.

Confidence amongst Multidisciplinary Professionals in Managing Paediatric Rheumatic Disease in Australia.

Objective Interprofessional collaboration is a crucial component of care for children with rheumatic disease. Interprofessional care, when delivered appropriately, prevents disability and improves long-term prognosis in this vulnerable group. Methods The aim of this survey was to explore allied health professionals' and nurses' confidence in treating paediatric rheumatology patients. Results Overall, 117 participants were recruited, 77.9% of participants reported being “not confident at all,” “not confident,” or “neutral” in treating children with rheumatic diseases (RD) despite 65.1% of participants reporting having treated >1 paediatric rheumatology case in the past month. Furthermore, 67.2% of participants felt their undergraduate education in paediatric rheumatology was inadequate. “Journals” or “texts books” were used by 49.3% of participants as their primary source of continuing professional development (CPD) and 39.3% of participants indicated that they did not undertake any CPD related to paediatric rheumatology. Small group and online education were perceived to be potentially of “great benefit” for CPD. Conclusion This paper highlights allied health professionals' and nurses' perceived inadequacy of their undergraduate education in paediatric RD and their low confidence in recognising and treating RD. Undergraduate and postgraduate education opportunities focusing on interprofessional collaboration should be developed to address this workforce deficiency.

U.S. Preventive Services Task Force Approach to Child Cognitive and Behavioral Health.

An important component of routine preventive care for children is the monitoring of growth and development. Although cognitive, affective, and behavioral health problems are commonly encountered in pediatric primary care, there is debate around issues related to early detection of significant problems of this type, including the accuracy of screening and the benefits and harms of early diagnosis and treatment. The U.S. Preventive Services Task Force makes recommendations regarding clinical preventive services for primary care clinicians based on the best available scientific evidence. The Task Force has found important gaps related to the validity of commonly used screening tools and significant gaps related to the evidence regarding early treatment. This review describes the meaning of the grades used by the Task Force, how these grades are determined, and the grades assigned to childhood cognitive, affective, and behavioral health recommendations. The review summarizes common themes in the evidence gaps and the future research necessary to advance the field and improve child health outcomes.

Early Integration of Palliative Care for Children with High‐Risk Cancer and Their Families

Despite increasing data to support pediatric palliative care (PPC) as an integral component of high-quality care for children with life-threatening conditions and their families, timely integration of PPC is offered inconsistently to children with high-risk cancer. In this review, we summarize the growing body of literature in support of early integration of PPC for children with high-risk cancer and their families, advocating that PPC principles and resources are imperative to holistic cancer-directed care and rooted in evidence-based medicine. Finally, we offer possible strategies for optimizing integration of PPC into holistic cancer care for children and families.

Utility of whole-exome sequencing for those near the end of the diagnostic odyssey: time to address gaps in care.

An accurate diagnosis is an integral component of patient care for children with rare genetic disease. Recent advances in sequencing, in particular whole‐exome sequencing (WES), are identifying the genetic basis of disease for 25–40% of patients. The diagnostic rate is probably influenced by when in the diagnostic process WES is used. The Finding Of Rare Disease GEnes (FORGE) Canada project was a nation‐wide effort to identify mutations for childhood‐onset disorders using WES. Most children enrolled in the FORGE project were toward the end of the diagnostic odyssey. The two primary outcomes of FORGE were novel gene discovery and the identification of mutations in genes known to cause disease. In the latter instance, WES identified mutations in known disease genes for 105 of 362 families studied (29%), thereby informing the impact of WES in the setting of the diagnostic odyssey. Our analysis of this dataset showed that these known disease genes were not identified prior to WES enrollment for two key reasons: genetic heterogeneity associated with a clinical diagnosis and atypical presentation of known, clinically recognized diseases. What is becoming increasingly clear is that WES will be paradigm altering for patients and families with rare genetic diseases.

The pediatric surgeon and palliative care

Palliative care is now a core component of pediatric care for children and families who are confronting serious illness with a low likelihood of survival. Pediatric surgeons, in partnership with pediatric palliative care teams, can play a pivotal role in assuring that these patients receive the highest possible quality of care. This article outlines a variety of definitions and conceptual frameworks, describes decision-making strategies and communication techniques, addresses issues of interdisciplinary collaboration and personal self-awareness, and illustrates these points through a series of case vignettes, all of which can help the pediatric surgeon perform the core tasks of pediatric palliative care.

Can Journaling Provide Support for NICU Families?

Column Editor: Linda FranckFamily‐Centered Care provides a forum for sharing information about basic components of caring for children and families, including respect, information sharing, collaboration, family‐to‐family support, and confidence building.

Cross-age peer mentoring approach to impact the health outcomes of children and families

Family-Centered Care provides a forum for sharing information about basic components of caring for children and families, including respect, information sharing, collaboration, family-to-family support, and confidence building.

Promoting the Health of Frontier Caregiving Grandparents: A Demonstration Project Evaluation

Column Editor: Bonnie Gance-Cleveland Family-Centered Care provides a forum for sharing information about basic components of caring for children and families, including respect, information sharing, collaboration, family-to-family support, and confidence building.

Inspiratory muscle training in a child with nemaline myopathy and organ transplantation

To report the use of inspiratory muscle strength training to treat repeated ventilatory insufficiency in a child with nemaline myopathy who underwent cardiac and renal transplantation. Case report. Pediatric intensive care unit of a tertiary care university teaching hospital. A 16-yr-old female with nemaline myopathy affecting cardiorespiratory function, recent organ transplantation, and delayed postoperative ventilatory recovery. Inspiratory muscle strength training was provided 5 days weekly for 2 wks, accompanied by progressive weaning from noninvasive ventilation. Maximal inspiratory pressure increased from -36.7 cm H2O to -77.8 cm H2O, accompanied by improved inspiratory flow, volume, pressure activation and power. During the training period, the patient was weaned from continuous noninvasive ventilatory assist to her preoperative level of ventilatory function. Inspiratory muscle training may be a beneficial component of care for children with nemaline myopathy who experience acute ventilatory insufficiency.

Behavioral sleep disturbances in children clinically referred for evaluation of obstructive sleep apnea

Objective/Background Obstructive sleep apnea (OSA) and behavioral sleep disturbances (BSD) are known to have a negative health impact on children. OSA and BSD may coexist; however, such comorbidity is not fully appreciated in clinical settings. Methods Patients referred for OSA evaluation completed polysomnography and the Children’s Sleep Habits Questionnaire. Prevalence estimates for clinically significant BSD were computed and comorbidity of BSD and OSA was examined. Chart reviews were completed to determine if BSD were addressed in the medical treatment plan. Results Over one-half of the sample had a clinically significant BSD. Patients with comorbid OSA and BSD represented 39.46% of the sample. In 36–54% of the patients with a clinically significant BSD, no plan to treat the BSD was documented in the patient’s medical record. Conclusions Children referred for evaluation of OSA have a high likelihood of experiencing clinically significant BSD irrespective of OSA diagnosis. Sleep medicine clinicians should be careful not to overlook the potential impact of BSD even after a child has been formally diagnosed with OSA. Physician knowledge of empirically supported behavioral sleep treatments or access to behavioral sleep medicine services is an essential component of comprehensive care for children clinically referred for OSA evaluation.

Engaging Families to Prevent Substance Use Among Latino Youth

Angela Chia-Chen Chen, Bonnie Gance-Cleveland, Albert Kopak, Steven Haas, and Mary Gillmore Column Editor: Bonnie Gance-Cleveland Family-Centered Care provides a forum for sharing information about basic components of caring for children and families, including respect, information sharing, collaboration, family-to-family support, and confidence building.

Parental Presence During Pediatric Resuscitation: The Use of Simulation Training for Cardiac Intensive Care Nurses

Sherry Pye, Janie Kane, and Amber Jones Column Editor: Bonnie Gance-Cleveland Family-Centered Care provides a forum for sharing information about basic components of caring for children and families, including respect, information sharing, collaboration, family-to-family support, and confidence building.

Keeping an Eye on Patient Safety Using Human Factors Engineering (HFE): A Family Affair for the Hospitalized Child

Barbara L. Wilson Column Editor: Bonnie Gance-Cleveland Family-Centered Care provides a forum for sharing information about basic components of caring for children and families, including respect, information sharing, collaboration, family-to-family support, and confidence building.

Helping Families Find the Best Evidence: CAM Therapies for Autism Spectrum Disorders and Asperger's Disorder

Family-Centered Care provides a forum for sharing information about basic components of caring for children and families, including respect, information sharing, collaboration, family-to-family support, and confidence building.

Uninsured children: A state-by-state analysis

This article provides a state-by-state analysis of the uninsured component of health care for children. The topical area is significant because one usually does not expect that some—or any—children do not have health insurance coverage. The major findings were that the state rates of noncoverage of children depended on race/ethnicity and region when other variables were controlled. The findings raise the following fundamental questions: Can we consider health care to be at the same level of collective responsibility as education? Can we afford not to do so? Is there an expanded role for Medicaid?