Breastfeeding Infants with Phenylketonuria in the United States and Canada

Objective: This study described the prevalence and duration of mothers’ breastfeeding infants with phenylketonuria (PKU) and explored factors related to duration of breastfeeding as a surrogate for breastfeeding success. Subjects and Methods: Descriptive analysis as performed from an international Internet survey of mothers (n = 103) who met the inclusion criteria: (1) at least 21 years of age, (2) able to read and write in English, (3) child with PKU, and (4) living in the United States or Canada. Results: Of the 103 mothers, 89 (86%) initiated breastfeeding immediately following delivery, whereas 14 (14%) chose bottle feeding. In comparison to breastfeeding after delivery, significantly fewer mothers breastfed after diagnosis (McNemar’s v2 = 30.33, p \u3c 0.001; n = 72 vs. n = 89). Breastfeeding duration ranged from less than 1 month to 24 months with one modal duration category (n = 20, 22%) at less than 1 month. The timing of the addition of commercial infant formula to supplement breastfeeding or expressed mothers’ milk was associated with a shorter duration of breastfeeding among infants with PKU: v2 (42, n = 73) = 88.13, p \u3c 0.001. Conclusions: PKU is treated with phenylalanine (Phe) restriction. Breastfeeding infants with PKU is challenging in part because Phe intake is difficult to determine precisely. We studied breastfeeding duration in infants with PKU and factors associated with success. Further research should identify the unique needs of mothers’ breastfeeding infants with PKU to guide the development of interventions specific to these mothers to support their efforts to continue breastfeeding after the diagnosis of PKU

Nurse Engagement and Contributions to the Clinical and Translational Science Awards Initiative

CTSAs are mandated to follow a multidisciplinary model. Requests for applications direct responsive applications to “integrate clinical and translational science across multiple departments, schools,” listing disciplines in addition to medicine such as engineering, nursing, and public health. This inventory of nurse engagement in CTSAs describes the extent of nursing's CTSA engagement from the perspective of participating nurse scientists within individual CTSAs, including institutional/national contributions and best practices that foster a multidisciplinary model. Of the 50 CTSAs affiliated with a nursing school, 44 responded (88% response rate). Of the ten CTSAs not affiliated with a nursing school, four responded (40% response rate). Overall funding success rates of nurse applicants are: TL1 fellowships 81%, KL2 fellowships 54%, and nurse‐led pilots 58%. At most CTSAs nursing is contributing to the accomplishment of the CTSA mandate. The strongest categories of contribution are community engagement, implementation science, and training. Best practices to enhance multidisciplinary collaboration are: (1) inclusion of multiple disciplines on key committees who meet regularly to guide individual core and overall CTSA strategic planning and implementation; (2) required multidisciplinary co‐mentors (ideally from different schools within the CTSA) on training grants and as co‐investigators on pilot projects; and (3) documentation of multidisciplinary activity in annual reports.Peer Reviewedhttp://deepblue.lib.umich.edu/bitstream/2027.42/98323/1/cts12020.pd

Assessment of the Psychometric Properties of the Family Management Measure

Objective This paper reports development of the Family Management Measure (FaMM) of parental perceptions of family management of chronic conditions. Method By telephone interview, 579 parents of children age 3 to 19 with a chronic condition (349 partnered mothers, 165 partners, 65 single mothers) completed the FaMM and measures of child functional status and behavioral problems and family functioning. Analyses addressed reliability, factor structure, and construct validity. Results Exploratory factor analysis yielded six scales: Child's Daily Life, Condition Management Ability, Condition Management Effort, Family Life Difficulty, Parental Mutuality, and View of Condition Impact. Internal consistency reliability ranged from .72 to .91, and test-retest reliability from .71 to .94. Construct validity was supported by significant correlations in hypothesized directions between FaMM scales and established measures. Conclusion Results support FaMM's; reliability and validity, indicating it performs in a theoretically meaningful way and taps distinct aspects of family response to childhood chronic conditions

The Interplay of Concepts, Data, and Methods in the Development of the Family Management Style Framework

This article describes the process of development of the Family Management Style Framework. The FMSF is a conceptual representation of family response to a child's condition that takes into account the views of individual family members to conceptualize overall patterns of family response. The FMSF provides a more complete understanding of family life in the context of a child's chronic condition and directs researchers’ and clinicians’ efforts to assess family response, especially with regard to how condition management is incorporated into everyday family life. Framework development has included conceptual analyses of the literature, empirical studies of family management of childhood illness, and methodological work directed to treating the family as a unit of study and analysis. This article highlights how the interplay of conceptual, empirical, and methodological work advances knowledge development and presents lessons learned over the course of developing the FMSF

Quality nursing care for hospitalized patients with advanced illness: Concept development

The quality of nursing care as perceived by hospitalized patients with advanced illness has not been examined. A concept of quality nursing care for this population was developed by integrating the literature on constructs defining quality nursing care with empirical findings from interviews of 16 patients with advanced illness. Quality nursing care was characterized as competence and personal caring supported by professionalism and delivered with an appropriate demeanor. Although the attributes of competence, caring, professionalism, and demeanor were identified as common components of quality care across various patient populations, the caring domain increased in importance when patients with advanced illness perceived themselves as vulnerable. Assessment of quality nursing care for patients with advanced illness needs to include measures of patient perceptions of vulnerability

Patterns of Family Management of Childhood Chronic Conditions and Their Relationship to Child and Family Functioning

Understanding patterns of family response to childhood chronic conditions based on a configuration of multiple variables or qualitative themes provides a comprehensive understanding of health-related challenges and their influence on family and child functioning. In this paper, we used the six scales comprising the Family Management Measure (FaMM) in a cluster analysis to describe a typology of family management and data from other measures of child and family functioning to validate and explain those clusters. The sample of 575 parents from 414 families of children who had diverse chronic conditions endorsed four patterns of response (Family Focused, Somewhat Family Focused, Somewhat Condition Focused, Condition Focused). We also considered the extent to which couples had shared or discrepant views of family management. Most (57%) families were in either the Family Focused or Somewhat Family Focused pattern. Single mothers were significantly less likely to be in the two patterns reflecting greater ease in family management and significantly more likely to be in the two patterns reflecting more difficulty. Patterns of family management were related significantly to family and child functioning, with families in the Family Focused and Somewhat Family Focused patterns demonstrating significantly better family and child functioning than families in the other two patterns

Parent management of the school reintegration needs of children and youth following moderate or severe traumatic brain injury

School reintegration following children’s traumatic brain injury (TBI) is still poorly understood from families’ perspectives. We aimed to understand how both unique and common experiences during children’s school reintegration were explained by parents to influence the family

Text-in-context: a method for extracting findings in mixed-methods mixed research synthesis studies

Our purpose in this paper is to propose a new method for extracting findings from research reports included in mixed-methods mixed research synthesis studies

Parent-to-Child Transition in Managing Cystic Fibrosis: A Research Synthesis: Parent-Child Transition: Managing Cystic Fibrosis

Although parents and children must adhere to five primary treatments for cystic fibrosis (CF), and their roles transition over time, the scope of CF studies often has been limited to one treatment regimen or to children within a specified age range. The purpose of this mixed research synthesis study is to integrate findings from qualitative and quantitative studies addressing the transition of CF management from parent to child, as well as factors related to adherence across treatments and over time. An existing grounded theory was used as a framework to synthesize findings in 17 reports from 16 studies. The results confirm the theory and posit three additional factors that may influence parent-to-child transition of care management