The Role of Online Social Support in Supporting and Educating Parents of Young Children With Special Health Care Needs in the United States: A Scoping Review

Background: When parents of young children with special health care needs (CSHCN) receive their child’s diagnosis, they encounter information they may not understand, emotions they may not know how to cope with, and questions about their child’s immediate and long-term future that frequently lack answers. The challenge of health care providers is how to prepare parents for caring for their CSHCN, for coping with any resulting challenges, and for accessing the systems and services that can assist them. Objective: The purpose of this work was to review evidence of the information and support needs of parents of young CSHCN and to determine whether online social support can serve as an avenue for learning and empowerment for these parents. Methods: A scoping review identified the challenges, coping mechanisms, and support needs among parents of CSHCN, and the reach and effectiveness of digital technologies with these families and health care providers. We also conducted interviews with professionals serving parents of CSHCN. Results: The literature review and interviews suggested that parents best learn the information they need, and cope with the emotional challenges of raising a CSHCN, with support from other parents of CSHCN, and that young parents in recent years have most often been finding this parent-to-parent support through digital media, particularly social media, consistent with the theory of online social support. Evidence also shows that social media, particularly Facebook, is used by nearly all women aged 18-29 years across racial and socioeconomic lines in the United States. Conclusions: Parents of young CSHCN experience significant stress but gain understanding, receive support, and develop the ability to care for and be advocates for their child through parent-to-parent emotional and informational social support. Online social support is most effective with young adults of childbearing age, with social media and apps being the most useful within the theoretical framework of social support. This opens new opportunities to effectively educate and support parents of young CSHCN. Providers seeking to inform, educate, and support families of CSHCN should develop strategies to help parents find and use social support through digital resources to facilitate their emotional adjustment and practical abilities to care for and access services for their child. [J Med Internet Res 2016;18(12):e333

Rigorous and consistent evaluation of diagnostic tests in children: another unmet need

It is time for the pediatric community, along with the FDA and the device industry, to renew efforts to better provide appropriately evaluated devices and diagnostic tests for children. This will require seriously considering incentives and/or funding for pediatric trials, improving insurance coverage to reimburse for device use, and creative approaches to the evaluation process in children. In the meantime, the FDA should work to better communicate the device and diagnostic test regulatory process to the public and physicians, and make clear to pediatricians to what extent specific diagnostic tests and devices have and have not been evaluated in children.This work was supported in part by the Indiana Clinical and Translational Sciences Institute funded, and in part by Award Number UL1TR002529 from the National Institutes of Health, National Center for Advancing Translational Sciences, and Clinical and Translational Sciences Award

Hydrogeology and Geochemistry of Glacial Deposits in Northeastern Kansas

Twelve counties (Atchison, Brown, Doniphan, Douglas, Jackson, Jefferson, Johnson, Leavenworth, Nemaha, Shawnee, Wabaunsee, and Wyandotte) in northeastern Kansas were glaciated during the Pleistocene Epoch. The glacial deposits consist of till, fluvial, loess, and lacustrine deposits locally totalling thicknesses of 400 ft (120 m). A major buried valley 3 mi (5 km) wide, 400 ft (120 m) deep, and 75 mi (120 km) long trends eastward across southern Nemaha, northern Jackson, and central Atchison counties. Several smaller tributary valleys can be identified in Atchison, Nemaha, Brown, Jackson, and Jefferson counties. Other buried valleys generally trend southward to the Kansas River valley or northward into Nebraska and Missouri. The glacial deposits filling the buried valleys locally are clayey. However, most valleys contain at least some water-bearing sand and gravel. Wells drilled into the best water-bearing sand and gravel deposits may yield as much as 900 gallons per minute (gpm; 0.06 m3/sm3/s), but less than 500 gpm (0.03 m3/s) is more common. The alluvial deposits of the Kansas and Missouri river valleys are the major sources of ground water in northeastern Kansas. Wells in these aquifers may have yields of 5,000 gpm (0.3 m3/s), but yields are more commonly less than 3,000 gpm (0.2 m3/s). We analyzed data from 80 pump tests using computer programs to find the best fit for transmissivity (1) and storage (S) values on glacial, alluvial, and bedrock aquifers. Transmissivities in the Missouri River valley alluvium ranged from 200,000 gallons per day per foot (gpd/ft) to 600,000 gpd/ft (2,000-7,000 m2/d), and storage values were between 0.001 and 0.0004. Tests in the Kansas River valley alluvium indicated transmissivities in the range 50,000-600,000 gpd/ft (600-7,000 m2/d) and storage values of 0.03. In the main buried valley across northeastern Kansas, the glacial deposits had T and S values of 2,500-25,600 gpd/ft (31.0-318 m2/d) and 0.00002-0.002, respectively. In the smaller buried valleys the glacial deposits had T values ranging from 1,500 gpd/ft to 100,000 gpd/ft (19-1,200 m2/d). Because of increasing population size in northeastern Kansas, appropriations of water for public and industrial water supplies have been increasing. Most of the pumpage comes from wells in the Kansas and Missouri river valleys. However, in 1981 the Division of Water Resources reported allocations of 1,466 acre-ft of water from wells tapping glacial aquifers associated with the main buried channel across Nemaha, Jackson, and Atchison counties and an additional 837 acre-ft from tributaries associated with the main buried channel. Nemaha County has the largest appropriation of water from the glacial aquifer (1,549 acre-ft/yr in 1983), and Wyandotte County has the largest appropriation of water from the alluvial aquifers (54,250 acre-ft/yr in 1983). Shawnee County has the largest number of ground-water appropriation rights (217). In 1981, for the 12-county study area, the Division of Water Resources found that 773 wells have ground-water appropriation rights. These 773 wells have appropriation rights for 140,484 acre-ft of water from alluvial aquifers, 5,290 acre-ft from glacial aquifers, and 2,146 acre-ft from Pennsylvanian and Permian rock aquifers. Maps for each county show the depth to bedrock, total thickness of Pleistocene sand and gravel deposits, estimated yield of wells, depth to water in wells and test holes, and the saturated thickness of Pleistocene deposits. A bedrock topographic map for the twelve counties was prepared from outcrop data and information from more than 5,000 water well, oil and gas, and test-hole logs. Ground waters from alluvial deposits are hard calcium bicarbonate waters that may have iron concentrations of several milligrams per liter. Sand and gravel associated with the glacial deposits generally yield hard calcium bicarbonate waters and may contain appreciable amounts of iron, manganese, sulfate, and chloride locally. Nitrate concentrations above 45 mg/L are noted in a number of wells of varying depth and aquifer source

Hydrogeology and Geochemistry of Glacial Deposits in Northeastern Kansas

Twelve counties (Atchison, Brown, Doniphan, Douglas, Jackson, Jefferson, Johnson, Leavenworth, Nemaha, Shawnee, Wabaunsee, and Wyandotte) in northeastern Kansas were glaciated during the Pleistocene Epoch. The glacial deposits consist of till, fluvial, loess, and lacustrine deposits locally totalling thicknesses of 400 ft (120 m). A major buried valley 3 mi (5 km) wide, 400 ft (120 m) deep, and 75 mi (120 km) long trends eastward across southern Nemaha, northern Jackson, and central Atchison counties. Several smaller tributary valleys can be identified in Atchison, Nemaha, Brown, Jackson, and Jefferson counties. Other buried valleys generally trend southward to the Kansas River valley or northward into Nebraska and Missouri. The glacial deposits filling the buried valleys locally are clayey. However, most valleys contain at least some water-bearing sand and gravel. Wells drilled into the best water-bearing sand and gravel deposits may yield as much as 900 gallons per minute (gpm; 0.06 m3/sm3/s), but less than 500 gpm (0.03 m3/s) is more common. The alluvial deposits of the Kansas and Missouri river valleys are the major sources of ground water in northeastern Kansas. Wells in these aquifers may have yields of 5,000 gpm (0.3 m3/s), but yields are more commonly less than 3,000 gpm (0.2 m3/s). We analyzed data from 80 pump tests using computer programs to find the best fit for transmissivity (1) and storage (S) values on glacial, alluvial, and bedrock aquifers. Transmissivities in the Missouri River valley alluvium ranged from 200,000 gallons per day per foot (gpd/ft) to 600,000 gpd/ft (2,000-7,000 m2/d), and storage values were between 0.001 and 0.0004. Tests in the Kansas River valley alluvium indicated transmissivities in the range 50,000-600,000 gpd/ft (600-7,000 m2/d) and storage values of 0.03. In the main buried valley across northeastern Kansas, the glacial deposits had T and S values of 2,500-25,600 gpd/ft (31.0-318 m2/d) and 0.00002-0.002, respectively. In the smaller buried valleys the glacial deposits had T values ranging from 1,500 gpd/ft to 100,000 gpd/ft (19-1,200 m2/d). Because of increasing population size in northeastern Kansas, appropriations of water for public and industrial water supplies have been increasing. Most of the pumpage comes from wells in the Kansas and Missouri river valleys. However, in 1981 the Division of Water Resources reported allocations of 1,466 acre-ft of water from wells tapping glacial aquifers associated with the main buried channel across Nemaha, Jackson, and Atchison counties and an additional 837 acre-ft from tributaries associated with the main buried channel. Nemaha County has the largest appropriation of water from the glacial aquifer (1,549 acre-ft/yr in 1983), and Wyandotte County has the largest appropriation of water from the alluvial aquifers (54,250 acre-ft/yr in 1983). Shawnee County has the largest number of ground-water appropriation rights (217). In 1981, for the 12-county study area, the Division of Water Resources found that 773 wells have ground-water appropriation rights. These 773 wells have appropriation rights for 140,484 acre-ft of water from alluvial aquifers, 5,290 acre-ft from glacial aquifers, and 2,146 acre-ft from Pennsylvanian and Permian rock aquifers. Maps for each county show the depth to bedrock, total thickness of Pleistocene sand and gravel deposits, estimated yield of wells, depth to water in wells and test holes, and the saturated thickness of Pleistocene deposits. A bedrock topographic map for the twelve counties was prepared from outcrop data and information from more than 5,000 water well, oil and gas, and test-hole logs. Ground waters from alluvial deposits are hard calcium bicarbonate waters that may have iron concentrations of several milligrams per liter. Sand and gravel associated with the glacial deposits generally yield hard calcium bicarbonate waters and may contain appreciable amounts of iron, manganese, sulfate, and chloride locally. Nitrate concentrations above 45 mg/L are noted in a number of wells of varying depth and aquifer source

Project development teams: a novel mechanism for accelerating translational research

The trend in conducting successful biomedical research is shifting from individual academic labs to coordinated collaborative research teams. Teams of experienced investigators with a wide variety of expertise are now critical for developing and maintaining a successful, productive research program. However, assembling a team whose members have the right expertise requires a great deal of time and many resources. To assist investigators seeking such resources, the Indiana Clinical and Translational Sciences Institute (Indiana CTSI) created the Project Development Teams (PDTs) program to support translational research on and across the Indiana University-Purdue University Indianapolis, Indiana University, Purdue University, and University of Notre Dame campuses. PDTs are multidisciplinary committees of seasoned researchers who assist investigators, at any stage of research, in transforming ideas/hypotheses into well-designed translational research projects. The teams help investigators capitalize on Indiana CTSI resources by providing investigators with, as needed, mentoring and career development; protocol development; pilot funding; institutional review board, regulatory, and/or nursing support; intellectual property support; access to institutional technology; and assistance with biostatistics, bioethics, recruiting participants, data mining, engaging community health, and collaborating with other investigators.Indiana CTSI leaders have analyzed metrics, collected since the inception of the PDT program in 2008 from both investigators and team members, and found evidence strongly suggesting that the highly responsive teams have become an important one-stop venue for facilitating productive interactions between basic and clinical scientists across four campuses, have aided in advancing the careers of junior faculty, and have helped investigators successfully obtain external funds

Randomized controlled trial of SPIRIT: An effective approach to preparing African-American dialysis patients and families for end of life

This randomized controlled trial tested an intervention, Sharing Patients’ Illness Representations to Increase Trust (SPIRIT), designed to enhance communication regarding end-of-life care between African Americans with end-stage renal disease (ESRD) and their chosen surrogate decision makers (N = 58 dyads). We used surveys and semi-structured interviews to determine the feasibility, acceptability, and preliminary effects of SPIRIT on patient and surrogate outcomes at 1 week and 3 months post-intervention. We also evaluated patients’ deaths and surrogates’ end-of-life decision making to assess surrogates’ perceptions of benefits and limitations of the SPIRIT while facing end-of-life decisions. We found that SPIRIT promoted communication between patients and their surrogates and was effective and well received by the participants

Acute Effects of Enteral Nutrition on Protein Turnover in Adolescents with Crohn Disease

ABSTRACT: Adults with inactive Crohn disease have been shown to have normal rates of protein turnover when compared with healthy adults. It is not known whether this is true for adolescents with inactive Crohn disease, when rate of protein synthesis must be greater than that of breakdown for normal development. The objective of this study was to determine whether enteral nutrition acutely suppresses proteolysis and increases protein synthesis in adolescents with inactive Crohn disease. Six adolescents (five males/one female; mean age, 15.8 Ϯ 1.9 y; range, 13.2-17.6 y; mean bone age, 14.6 Ϯ 1.8 y; range, 12.5-17 y) participated. Leucine (Leu) and phenylalanine (Phe) kinetics were measured using stable isotopes under fasted and fed conditions during a single study visit. In response to enteral nutrition, the endogenous rates of appearance (R a ) of Leu and Phe (reflecting proteolysis) decreased significantly by 40%. The percentages of splanchnic uptake of Leu and Phe were 35 Ϯ 10% and 13 Ϯ 12%, respectively. Under fed conditions, utilization of Phe for protein synthesis increased significantly. We conclude that in clinically stable adolescents with Crohn disease, enteral nutrition promotes anabolism by suppressing proteolysis and increasing protein synthesis. Rates of suppression of proteolysis were similar to those reported previously in normal children

The Energy Density in the Maxwell-Chern-Simons Theory

A two-dimensional nonrelativistic fermion system coupled to both electromagnetic gauge fields and Chern-Simons gauge fields is analysed. Polarization tensors relevant in the quantum Hall effect and anyon superconductivity are obtained as simple closed integrals and are evaluated numerically for all momenta and frequencies. The correction to the energy density is evaluated in the random phase approximation (RPA), by summing an infinite series of ring diagrams. It is found that the correction has significant dependence on the particle number density. In the context of anyon superconductivity, the energy density relative to the mean field value is minimized at a hole concentration per lattice plaquette (0.05 \sim 0.06) (p_c a/\hbar)^2 where p_c and a are the momentum cutoff and lattice constant, respectively. At the minimum the correction is about -5 % \sim -25 %, depending on the ratio (2m \omega_c)/(p_c^2) where \omega_c is the frequency cutoff. In the Jain-Fradkin-Lopez picture of the fractional quantum Hall effect the RPA correction to the energy density is very large. It diverges logarithmically as the cutoff is removed, implying that corrections beyond RPA become important at large momentum and frequency.Comment: 19 pages (plain Tex), 12 figures not included, UMN-TH-1246/9