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

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

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

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

Commitment to Breastfeeding in the Context of Phenylketonuria

Objective: To describe the meaning and importance of breastfeeding to mothers of infants with phenylketonuria (PKU). Design: Qualitative description. Setting: Mothers from the United States and Canada were recruited from the PKU Listserv and interviewed by telephone. Participants: Ten breastfeeding mothers with infants who had PKU and were younger than age 36 months. Methods: Mothers’ thoughts, decisions, and experiences of breastfeeding their infants with PKU were collected through telephone interviews. Interviews were transcribed verbatim, and data were analyzed using thematic descriptive analysis in the context of PKU. Results: Participants felt that that breastfeeding an infant with PKU was the healthiest choice and was therefore worth the labor. These women believed that this was what a loving mother would choose. As they continued to breastfeed their infants after diagnosis, the views of the participants changed. Initially they saw PKU as a disorder and felt that their infants were ill; later they felt that their infants were healthy in spite of PKU. Normal could mean a breastfeeding infant with PKU. Conclusion: Findings demonstrate the importance mothers attribute to breastfeeding and their willingness to invest considerable effort to breastfeed. Health care providers working with these mothers should help them strategize for success

Scale development based on likelihood cross-validation

The use of likelihood cross-validation for guiding the scale development process is formulated and demonstrated, including choosing the number of factors, assessing item-factor allocations suggested by rotations, adjusting those allocations, reducing the number of factors, removing items, and assessing the applicability of scales to subjects other than those for whom it was originally developed. An example analysis is presented on the development of scales to measure how parents caring for a child with a chronic condition view their family's management of that condition

Analysis of Cross-Sectional Univariate Measurements for Family Dyads Using Linear Mixed Modeling

Outcome measurements from members of the same family are likely correlated. Such intrafamilial correlation (IFC) is an important dimension of the family as a unit but is not always accounted for in analyses of family data. This article demonstrates the use of linear mixed modeling to account for IFC in the important special case of univariate measurements for family dyads collected at a single point in time. Example analyses of data from partnered parents having a child with a chronic condition on their child's adaptation to the condition and on the family's general functioning and management of the condition are provided. Analyses of this kind are reasonably straightforward to generate with popular statistical tools. Thus, it is recommended that IFC be reported as standard practice reflecting the fact that a family dyad is more than just the aggregate of two individuals. Moreover, not accounting for IFC can affect the conclusions

Compassion and Vigilance: Investigators' Strategies To Manage Ethical Concerns in Palliative and End-of-Life Research

Ethical concerns were identified as a potential barrier to advancing palliative and end-of-life science at the 2004 National Institutes of Health State of the Science Meeting. However, data are lacking about the nature of ethical concerns and strategies for balancing the need to advance science with human subjects protections