Severe Iron Deficiency Anemia in Infants and Young Children, Requiring Hospital Admission.

Objective. This study evaluated patient characteristics, milk intake, and associated lab findings of children 6 months to 5 years old, admitted to a children's hospital with severe iron-deficiency anemia (IDA). Methods. A chart review was conducted on patients admitted with microcytic anemia (hemoglobin concentration less than 7 g/dL), accompanied by a low serum ferritin and/or low serum iron level between January 2000 and December 2006. Results. A total of 18 children with severe IDA were evaluated. Many had parents with private insurance and jobs. Almost all children drank >24 ounces of milk daily. Hemoglobin on admission was 3.8 g/dL, and the mean of the patients' mean corpuscular volume was 52.8 fL. Median iron levels were 4 µg/dL. Conclusions. Severe IDA is still prevalent in children, yet physicians may not perform necessary testing. The devastating long-term effects of severe IDA should prompt clinicians to screen for severe IDA in children regardless of absent risk factors.

Health care professionals' views of sharing information with families who have a child with a genetic condition.

The purpose of this study was to examine health care professionals' views and strategies for individualizing information sharing in families who have a child with a genetic condition. The sample consisted of 37 health professionals from three clinical sites in the greater metropolitan area of a large Midwestern city. Qualitative content thematic analysis was used to analyze data from the health professionals' semi-structured interviews. Four themes captured how health care professionals work with families around information management: Sharing Information with Parents, Taking into Account Parental Preferences, Understanding of the Condition, and Helping Parents Inform Others. These findings contribute to understanding the processes that health professionals use in sharing information with parents who have children with a genetic condition, and they provide guidance for clinical practice, professional training, and future research.

Parental perceptions of the outcome and meaning of normalization.

The purpose of this secondary analysis was to identify the meaning of normalization for parents of a child with a chronic genetic condition. The sample was comprised of 28 families (48 parents), selected to reflect two groups: Normalization Present (NP) and Normalization Absent (NA). Constant comparison analysis was used to identify themes characterizing parents' perceptions of the meaning of normalization. The meanings parents attributed to normalization reflected their evaluation of condition management, parenting role, and condition impact, with parents in the NP and NA groups demonstrating distinct patterns of meaning. These meaning patterns are discussed as an outcome of normalization. Providers can play a pivotal role in helping families achieve normalization by providing guidance on how to balance condition management with normal family life.

Information management in families who have a child with a genetic condition.

In families with children with genetic conditions, information management may influence how parents view their child; their reproductive decision making; and how, when, what, and why they communicate about the condition to other family members. The purpose of this study was to identify unique patterns of information management and to explore the relationship between these patterns and individual and family characteristics and functioning. The sample was composed of 142 parents in 86 families in which a child had a single-gene condition. Four distinct information management patterns were identified that varied in the parents' understanding of the genetic aspects of the condition: accurate understanding-open (35%, n = 30), accurate understanding-selective (24%, n = 21), discrepant understanding (15%, n = 13), and confused understanding (26%, n = 22). In two patterns, accurate understanding-open and accurate understanding-selective (59%), parents had an accurate understanding of the genetic aspects of the condition, and the patterns were differentiated from one another by parents' views about sharing information. In the discrepant understanding pattern, which included only two-parent families, one parent had an accurate understanding and one parent a confused understanding of the genetic aspects of the condition. In the confused understanding pattern, parents had an inaccurate understanding of one or more of the genetic aspects of the condition. Statistically significant differences were found between information management patterns and parents' education, family annual income, and health insurance coverage. These information management patterns reflect how parents access, interpret, and convey genetic information and can influence the effectiveness of health care providers' interactions with these families.

Gaps in pediatric clinician communication and opportunities for improvement.

Teamwork and good communication are central to the provision of high-quality care. A standardized focus-group protocol was used. Analysis assessed emergent themes of patient safety-related effective and problematic clinician communication. Sixty-three focus groups were conducted with clinicians from five Chicago Pediatric Patient Safety Consortium hospitals. Effective and problematic clinician-to-clinician communication themes were described in all focus groups and at each participating hospital. Problematic communication contexts included the communication process for orders, consultations, acuity assessment, management of surgical and medical patients, and the discharge process. Organizational policies and systems leading to patient safety risk included a lack of clear responsibilities and expectations for clinicians and for clinical communication, as well as a lack of a clear chain of responsibility for communication when hierarchical communication barriers affected safe patient care. Results of this investigation highlighted gaps in pediatric clinician communication and opportunities for improvement.

Parents' perspectives on having their children interviewed for research.

We describe parents' perspectives on research interviews with their children with single gene conditions. One hundred forty-two parents were interviewed between 2002 and 2003 in a larger study using a qualitative descriptive design. Two questions from the semi-structured interview guide were used to identify parents' perspectives about future interviews. Almost all of the parents said they would allow an interview with their children, but some parents specified stipulations. These stipulations included: focusing on age-appropriate information, limiting information with child, considering input from parents, and providing a child-oriented environment. Knowing this information, researchers can prepare to work more collaboratively with parents and include them more fully in the research process.

Parents' concerns about issues related to their children's genetic conditions.

PURPOSE: The purpose of this analysis was to examine parents' (N = 142) concerns about issues (i.e., privacy of information, insurance, healthcare costs, employment, school) related to their children's genetic conditions. DESIGN AND METHODS: Using a series of matrices, thematic analysis was conducted focusing on parents' concerns. RESULTS: Parents were less concerned with privacy and more concerned with insurance, healthcare costs, employment, and school issues. PRACTICE IMPLICATIONS: Nurses and other healthcare professionals need to give parents the opportunity to discuss their concerns and to assist parents with strategies and resources to meet the needs of their children and families.

Family patterns of decision-making in pediatric clinical trials.

The decision-making process related to a child's participation in clinical trials often involves multiple family members. The aim of this study was to compare family patterns of decision-making within and across family units in pediatric clinical trials. Participants for this secondary analysis included 14 families from a larger study of informed consent. Four distinct patterns of decision-making were identified: Exclusionary, informative, collaborative, and delegated. These patterns varied with regard to three dimensions of parents' decision-making goals, child level of involvement, and the parental role. These patterns of decision-making affect how parents and children communicate with health professionals and influence the effectiveness of health care providers interactions with the family related to the decision-making process.

Procalcitonin as a screening test for late-onset sepsis in preterm very low birth weight infants.

OBJECTIVE: To compare the utility of procalcitonin (PCT) vs C-reactive protein (CRP) as indicators of late-onset neonatal sepsis in very low birth weight (VLBW) infants. METHODS: PCT and CRP levels were measured in VLBW infants with suspected sepsis and controls. Comparisons were made between infected vs noninfected infants. Using cutoff values of 0.5 and 1.0 ng/ml for PCT and 0.8 mg/dl for CRP, sensitivity, specificity, positive and negative predictive values were calculated to evaluate these assays as potential predictors of late-onset sepsis. RESULTS: A total of 67 infants were evaluated. Mean PCT levels were significantly higher in the infected group (5.41 ng/ml) compared to the noninfected group (0.43 ng/ml) (p < 0.001). At a cut off value of 0.5 ng/ml, the sensitivity of PCT was 97%, whereas that of CRP was 73% in predicting late-onset sepsis. At a PCT cutoff of 1.0 ng/ml, sensitivities of PCT and CRP were similar (72% each). CONCLUSION: PCT (0.5 ng/ml) is more sensitive than CRP in predicting late-onset sepsis in VLBW infants.

Parents' views of their children's participation in phase I oncology clinical trials.

Data from two descriptive studies regarding decision making in pediatric oncology were analyzed using qualitative, secondary analysis techniques to describe how parents view their children's participation in phase I oncology clinical trials. A conceptual framework on family management styles (defining, managing, and consequence themes) was used as an organizational framework to analyze the available parental data. Parents defined or viewed their situation in relationship to their choices and expectations, health care provider expectations, children's illness situation, and family and personal situations. These themes are contrasted to clinical, parental, and ethical perspectives from the literature to make recommendations for further research emphasizing the concerns of families.