Supporting the Well-Being of Children and Youth With Special Health Care Needs: NASEM Proceedings.

Children and youth with special health care needs (CYSHCN) are living longer than ever. These advances come with a price: Patients, families, communities, and systems must absorb the challenges of chronic caregiving, including protracted stress and poor mental health. In 2023, the National Academies of Science, Engineering, and Medicine convened thought-leaders for conversations about supporting the emotional well-being of CYSHCN and their families.

Physical activity in the Fontan population: provider recommendations and patient actions.

Background: Emerging evidence suggests that routine physical activity may improve exercise capacity, long-term outcomes, and quality of life in individuals with Fontan circulation. Despite this, it is unclear how active these individuals are and what guidance they receive from medical providers regarding physical activity. The aim of this study was to survey Fontan patients on personal physical activity behaviours and their cardiologist-directed physical activity recommendations to set a baseline for future targeted efforts to improve this.

Exploring the perspectives of selectors and collecters of trial outcome data: an international qualitative study.

Introduction: Selecting and collecting data to support appropriate primary and secondary outcomes is a critical step in designing trials that can change clinical practice. In this study, we aimed to investigate who contributes to the process of selecting and collecting trial outcomes, and how these people are involved. This work serves two main purposes: (1) it provides the trials community with evidence to demonstrate how outcomes are currently selected and collected, and (2) it allows people involved in trial design and conduct to pick apart these processes to consider how efficiencies and improvements can be made.

Understanding Unmet Care Needs of Rural Older Adults with Chronic Health Conditions: A Qualitative Study.

Background: Rural populations experience poorer access to the necessary health services for chronic health conditions. Although studies of rural healthcare access continue to expand, most are based on quantitative data, yet normative views and lived experiences of rural adults might offer a better understanding of healthcare access and their specific unmet needs. This qualitative study sought the views of both rural-centric older people and healthcare professionals to understand health needs, barriers, and enablers of accessing health services, with a focus on chronic health condition(s).

A good use of time? Providing evidence for how effort is invested in primary and secondary outcome data collection in trials.

Background: Data collection is a substantial part of trial workload for participants and staff alike. How these hours of work are spent is important because stakeholders are more interested in some outcomes than others. The ORINOCO study compared the time spent collecting primary outcome data to the time spent collecting secondary outcome data in a cohort of trials.

Catalysts for Change: The Role of Nonprofits in Solving Single Ventricle Heart Disease.

Single ventricle (SV) heart disease comprises a spectrum of complex congenital heart defects (CHDs), including hypoplastic left heart syndrome (HLHS), one of the most common causes of death amongst infants with CHD. Despite its incompletely defined etiology and a dearth of curative solutions, SV is a solvable problem that can be addressed by unifying a nascent field that is ripe for investment, in part due to its high economic impact and growth potential. Here, we explore the landscape of SV and identify areas of opportunity that will yield an outsized impact through strategic investment that focuses on synchronization across disciplines, community involvement, and infrastructure development, and argue that nonprofits are the appropriate catalyst to spark transformative innovation and impact in the form of functional cures.

Rural disability workforce perspective on effective inter-disciplinary training-A qualitative pilot study.

Objective: Inter-professional education is a growing area of importance that enables training of health care professionals and students to develop skills in collaborative clinical practice, a critical aspect of disability care. However, research is limited on appropriate on-site inter-professional training for the rural and remote disability workforce. This paper aims to explore the features of an effective inter-professional training approach for rural disability workforce.

BSR Spondyloarthritis Course, 27 February 2020. Spondyloarthritis: pathogenesis, diagnosis and management.

High-quality continuous medical education is essential to maintain excellence in health-care delivery, upskilling professionals and improving patient outcomes. This is particularly relevant when addressing rare disease groups, such as the spondyloarthritides, a group of heterogeneous inflammatory conditions that affect joints and other organs, such as the skin, bowel and eye. Professional bodies, such as the British Society for Rheumatology (BSR), are well placed to deliver this type of education.

The Fontan outcomes network: first steps towards building a lifespan registry for individuals with Fontan circulation in the United States.

The Fontan Outcomes Network was created to improve outcomes for children and adults with single ventricle CHD living with Fontan circulation. The network mission is to optimise longevity and quality of life by improving physical health, neurodevelopmental outcomes, resilience, and emotional health for these individuals and their families. This manuscript describes the systematic design of this new learning health network, including the initial steps in development of a national, lifespan registry, and pilot testing of data collection forms at 10 congenital heart centres.

Conflict between nursing student's personal beliefs and professional nursing values.

Background: Studies have established that negative perceptions of people living with HIV/AIDS exist among nursing students throughout the world, perceptions which can be detrimental to the delivery of high-quality nursing care.

Objectives: The purpose of this research was to explore socio-cultural influences on the perceptions of nursing students towards caring for people living with HIV/AIDS.

Research Design: The study was guided by stigma theory, a qualitative descriptive research approach was adopted.

Culturally construed beliefs and perceptions of nursing students and the stigma impacting on people living with AIDS: A qualitative study.

Background: Since HIV and AIDS were discovered, studies have demonstrated that negative perceptions and reluctance to provide care to affected people persist among nursing students throughout the world. This leads to poor quality care.

Objectives: To report on a study that explored socio-cultural influences on the perceptions of international nursing students toward caring for people living with HIV/AIDS.

Transparency in a Pediatric Quality Improvement Collaborative: A Passionate Journey by NPC-QIC Clinicians and Parents.

Transparency-sharing data or information about outcomes, processes, protocols, and practices-may be the most powerful driver of health care improvement. In this special article, the development and growth of transparency within the National Pediatric Cardiology Quality Improvement Collaborative is described. The National Pediatric Cardiology Quality Improvement Collaborative transparency journey is guided by equal numbers of clinicians and parents of children with congenital heart disease working together in a Transparency Work Group.

Diurnal variation of gait in patients with rheumatoid arthritis: The DIVIGN study.

Background: Circadian variation of joint stiffness (morning stiffness) and its impact on functional ability are widely recognised in rheumatoid arthritis. Subsequent within-day variation of walking ability is important due to the increased availability of instrumented gait analysis. This study aimed to quantify diurnal variation of gait in patients with rheumatoid arthritis, and explore associations with disease characteristics.

The nurse's role in addressing unmet treatment and management needs of patients with rheumatoid arthritis: Delphi-based recommendations.

Purpose: Evaluate nurse's role in management of patients with rheumatoid arthritis (RA).

Methods: Modified Delphi with two rounds of questionnaires, followed by in-person meeting. International group of 12 nurses experienced with RA patients receiving biologic therapy.

The Nurse's Role in Addressing Unmet Treatment and Management Needs of Patients With Rheumatoid Arthritis: Delphi-Based Recommendations.

Purpose: Evaluate nurse's role in management of patients with rheumatoid arthritis (RA).

Methods: Modified Delphi with two rounds of questionnaires, followed by in-person meeting. International group of 12 nurses experienced with RA patients receiving biologic therapy.

MRI identifies plantar plate pathology in the forefoot of patients with rheumatoid arthritis.

Previous cadaveric studies have suggested that forefoot deformities at the metatarsophalangeal (MTP) joints in patients with rheumatoid arthritis (RA) might result from the failure of the ligamentous system and displacement of the plantar plates. This study aimed to examine the relationship between plantar plate pathology and the rheumatoid arthritis magnetic resonance imaging score (RAMRIS) of the lesser (second to fifth) MTP joints in patients with RA using high-resolution 3 T magnetic resonance imaging (MRI). In 24 patients with RA, the forefoot was imaged using 3 T MRI.

Undergraduate nursing student's attitudes towards caring for people with HIV/AIDS.

The aim of this quantitative study was to determine the attitudes of Australian nursing students towards caring for people with HIV/AIDS. This research study was conducted among second year undergraduate nursing students at a university in South Australia, during August 2007. The survey tool consisted of six demographic questions and the AIDS Attitude Scale.

Attitudes of nursing students towards caring for people with HIV/AIDS: thematic literature review.

Title: Attitudes of nursing students towards caring for people with HIV/AIDS: thematic literature review.

Aim: This paper is a report of a literature review conducted to examine current research studies into attitudes of nursing students towards caring for people with HIV/AIDS and to identify factors that influenced those attitudes to inform current nursing practice and to develop nursing education regarding care provided to people with HIV/AIDS.

Background: Attitudes of nurses towards people living with HIV/AIDS have long been scrutinized.

Effect of fuel and lube oil sulfur on the performance of a diesel exhaust gas continuously regenerating trap.

The continuously regenerating trap (CRT) is a diesel exhaust emission control that removes nearly all diesel particulate matter on a mass basis, but under some circumstances oxidation of sulfur leads to the formation of nanoparticles. The objective of the four year study was to determine CRT performance under controlled, real-world, on-road conditions, and to develop quantitative relationships between fuel and lubrication oil sulfur concentration and particle number exhaust emissions. It was shown that nanoparticle emissions are minimized by the use of ultralow sulfur fuels and specially formulated low sulfur lubrication oil.

Outcome of late-onset hospital-acquired pneumonia related to causative organism.

Pneumonia caused by Pseudomonas spp. has been associated with an increase in mortality in critical care patients. Previous assessments, however, have failed to compare outcome solely with other pathogens associated with hospital-acquired pneumonia (HAP).

Barriers to healthy eating in the nursing profession: Part 1.

Aim: The aim of this study commissioned by the NHS Executive North West was to identify the main areas of the nurse's working environment that prevent healthy eating, to ascertain if nurses have enough nutritional knowledge to make informed choices, and to review sources, availability and quality of food provided for nursing staff.

Method: A purposive sample size of 126 nurses from across eight healthcare sites in the North West region completed questionnaires.

Results: Shift patterns and failure to take breaks were identified as the two main barriers to healthy eating by respondents.

Barriers to healthy eating in the nursing profession: Part 2.

Aim: This is the second of two articles that report on work commissioned by the NHS Executive North West, to explore the perceived barriers to healthy eating within the nursing profession.

Method: Observations were made of catering facilities within eight healthcare sites (six acute hospitals, an NHS walk-in centre and an NHS Direct site) across the North West region. Twenty four unstructured interviews were conducted with nurses and three were sampled from each healthcare site.