Sources of Uncertainty and Their Association with Medical Decision Making: Exploring Mechanisms in Fanconi Anemia

Background

Effects of different sources of medical uncertainty on people’s health-related cognitions, emotions, and decision making have yet to be systematically examined.

Purpose

The aim of this study is to examine how uncertainties arising from different sources are associated with decision making regarding stem cell transplantation in Fanconi anemia, a rare, inherited bone marrow failure syndrome that typically presents during childhood.

Methods

Data were collected through a cross-sectional survey of 178 parents of 126 Fanconi anemia patients.

Results

Two distinct sources of uncertainty were associated with decision outcomes: probability was associated with a lower likelihood of choosing stem cell transplantation, and ambiguity due to conflicting expert opinions was associated with greater decision-making difficulty. Concern about transplantation may mediate these associations.

Conclusions

Different sources of uncertainty have different effects on Fanconi anemia treatment decisions, which may be mediated by parents’ emotional reactions. Further research is needed to elucidate these effects and help Fanconi anemia families cope with uncertainty.     

Contemporary Childbirth Education Models

Since the 1960s, childbirth education advocates have attempted to persuade pregnant women that educational preparation for labor and birth is an essential component of the transition to motherhood. Initially, pregnant women who were seeking unmedicated births as a refuge from the inhumane childbirth treatments of the mid‐20th century embraced this view. However, with the changing childbirth climate, including a growing preference for medicated birth, scheduled inductions, and cesarean sections, attendance has diminished and childbirth education finds itself at a crossroads. Commonly used childbirth education models/organizations and several new emerging models along with the available research literature and recommendations for clinical practice and research are presented.     

Printed Health Information Materials: Evaluation of Readability and Suitability

Interdisciplinary collaboration and coordination of services are receiving new emphasis in Birth to Three Early Intervention programs under Part H of Public Law (PL) 102-119 (Individuals with Disabilities Education Act, formerly PL 99-457, the Education for All Handicapped Children Act). Public Health Nurses (PHNs) have historically provided health promotion services in the home to families of infants and children with special health and developmental needs, whereas other community programs have provided specific developmental and related services. Now, as the number of professional specialties involved with children with special needs increases, overlap also increases. Nursing is frequently questioned as to its unique contribution. The holistic health perspective of nursing, which integrates all aspects of the health and well-being of individuals and families, can provide especially valuable insight to the assessment, planning, and service delivery processes. Nurses need to not only participate in the planning process during the interdisciplinary planning meetings, but also to contribute their own assessment and recommendations from a nursing perspective. Under PL 102-119, the Individual Family Service Plan (IFSP) provides the framework for family-centered planning of services for the infant or young child with special needs. Developed in partnership with the family, this plan identifies strengths, resources, concerns, and priorities based on the family's determination of relevancy (Sokoly &; Dokecki, 1992). IFSP development includes formal and informal assessments by qualified professionals who provide their special expertise as shaped by the family's priorities. The health assessment and services called for within PL 102-119 are consistent with public health nursing's focus on prevention and early intervention. Health issues are basic to the definition of children with special health needs and often must be addressed before developmental goals can be...     

Childhood Lead Poisoning on the US-Mexico Border: A Case Study in Environmental Health Nursing Lead Poisoning

Abstract Human exposure to environmental hazards is a major public health problem along the US-Mexico border due to socio-economic, cultural and political factors. Childhood lead exposure is endemic in areas of extreme poverty and substandard housing. Hispanic children of indigent, poorly-educated, disenfranchised families are at disproportionate risk. Risk management is contingent upon consideration of the interrelationships between socioeconomics, politics, and culture. This case study explains childhood lead poisoning in a colonia family living at subsistence level from such a perspective. The purpose of the study was to identify, explain, and ameliorate lead exposure pathways. Case study methodology was used to support or refute the proposition that these children were exposed to occupational lead. The children were the study sampling unit and the family a subunit. An embedded single case explanatory design was appropriate. Data were collected from exposure surveys, environmental and blood specimens, and review of medical records. Pattern-matching and explanation-building techniques were used to analyze data. The study illustrated how extreme poverty, lack of access to health services, social isolation, language and legal barriers, and hazardous occupations may be singularly common risk factors for Hispanic children on the US-Maxico border. The study is pertinent to public health nurses who work with this population.     

Neural Tube Defects: A Primary Prevention Role for Nurses

Neural tube defects are among the most common and serious birth defects. Most of these defects are caused by multifactorial inheritance. Research over the past decade has led to advances in understanding the etiology of these congenital anomalies. Folic acid has been shown to reduce the risk of first-time occurrence of neural tube defects as well as recurrent risk. Other genetic and environmental factors are under investigation. In this article, the nurse's role in the primary prevention of these birth defects is described.     

Successes and Challenges of Interprofessional Physiologic Birth and Obstetric Emergency Simulations in a Nurse‐Midwifery Education Program

This article describes childbirth simulation design and implementation within the nurse‐midwifery education program at the University of California, San Francisco. Nurse‐midwife and obstetrician faculty coordinators were supported by faculty from multiple professions and specialties in curriculum review and simulation development and implementation. The primary goal of the resulting technology‐enhanced simulations of normal physiologic birth and obstetric emergencies was to assist learners’ development of interprofessional competencies related to communication, teamwork, and patient‐centered care. Trainees included nurse‐midwifery students; residents in obstetrics, pediatrics, and family medicine; medical students; and advanced practice nursing students in pediatrics. The diversity of participant types and learning levels provided benefits and presented challenges to effective scenario‐based simulation design among numerous other theoretical and logistical considerations. This project revealed practical solutions informed by emerging health sciences and education research literature, faculty experience, and formal course evaluations by learners. Best practices in simulation development and implementation were incorporated, including curriculum revision grounded in needs assessment, case‐ and event‐based clinical scenarios, optimization of fidelity, and ample time for participant debriefing. Adequate preparation and attention to detail increased the immersive experience and benefits of simulation. Suggestions for fidelity enhancement are provided with examples of simulation scenarios, a timeline for preparations, and discussion topics to facilitate meaningful learning by maternity and newborn care providers and trainees in clinical and academic settings. Pre‐ and postsimulation measurements of knowledge, skills, and attitudes are ongoing and not reported. This article is part of a special series of articles that address midwifery innovations in clinical practice, education, interprofessional collaboration, health policy, and global health.     

Reversing growth deficiency in children: The effect of a community-based intervention

Introduction: The effect of a community health nursing intervention on children with growth deficiency (also called nonorganic failure to thrive or growth failure) was examined in a pretest and post-test experimental study. This study evaluated the impact of the intervention on growth quotients, children's diets, parent-child interaction, home environment, and mothers' perceived stress.Methods: The sample consisted of 39 children (ages 3 months to 3 years) with growth deficiency in weight or height for age, weight for height, or a decrease in growth across two percentiles. The children were enrolled in Special Supplemental Feeding Program for Women, Infants and Children (WIC) clinics in county health departments and were randomly assigned to experimental or control groups. After preliminary data were collected for the entire sample, a community-based intervention was administered to the experimental group during home visits. The intervention included education about nutrition and about parenting and community skills.Results: Data collected after the intervention by a research assistant blind to group assignment indicated positive changes (P ≤ .05) in the experimental group's growth quotients, home environments, and their mothers' perceived stress.Discussion: This study supports the community health nursing practice of teaching nutrition and child care during home visits to families of children with growth deficiency.