This review provides an overview of an important aspect of early childhood home visiting research: understanding how parents are involved in program services and activities. Involvement is defined as the process of the parent connecting with and using the services of a program to the best of the client's and the program's ability. The term includes two broad dimensions: participation, or the quantity of intervention a family receives; and engagement, or the emotional quality of the family's interaction with the program. Research that includes examination of parent involvement is reviewed, including examples from the Early Head Start Research and Evaluation Project. Factors that influence involvement are noted, including parent characteristics, qualities of the home visitor, and program features. The need for further measurement development and implications of these findings for home visiting programs are discussed.

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The purpose of this cross-sectional, descriptive study was to identify predictors of distress for family caregivers of persons with a primary malignant brain tumor (PMBT). The effect of the care recipient's functional, cognitive, and neuropsychiatric status on caregiver burden and depressive symptoms was examined through telephone interviews with 95 caregivers. Care recipients' neuropsychiatric status consistently affected caregivers' depressive symptoms and burden, and assisting with activities of daily living affected burden related to caregivers' schedules and health. The care recipient's cognitive status and need for assistance with instrumental activities of daily living did not affect any outcome variable. Results may help identify caregivers at risk for negative outcomes, and suggest interventions to improve caregivers' emotional health.

Background Use of common data elements (CDEs), conceptually defined as variables that are operationalized and measured in identical ways across studies, enables comparison of data across studies in ways that would otherwise be impossible. Although healthcare researchers are increasingly using CDEs, there has been little systematic use of CDEs for symptom science. CDEs are especially important in symptom science because people experience common symptoms across a broad range of health and developmental states, and symptom management interventions may have common outcomes across populations. Purposes The purposes of this article are to (a) recommend best practices for the use of CDEs for symptom science within and across centers; (b) evaluate the benefits and challenges associated with the use of CDEs for symptom science; (c) propose CDEs to be used in symptom science to serve as the basis for this emerging science; and (d) suggest implications and recommendations for future research and dissemination of CDEs for symptom science. Design The National Institute of Nursing Research (NINR)-supported P20 and P30 Center directors applied published best practices, expert advice, and the literature to identify CDEs to be used across the centers to measure pain, sleep, fatigue, and affective and cognitive symptoms. Findings We generated a minimum set of CDEs to measure symptoms. Conclusions The CDEs identified through this process will be used across the NINR Centers and will facilitate comparison of symptoms across studies. We expect that additional symptom CDEs will be added and the list will be refined in future work. Clinical Relevance Journal of Nursing Scholarship, 47:5, ©2015 Sigma Theta Tau International.

Researchers have documented negative physical and emotional consequences for both family caregivers of persons with cancer as well as caregivers of persons with a neurologic disorder. However, there is a unique subset of caregivers who must provide care for someone who may suffer from both a short, terminal trajectory of disease, as well as neurological and neuropsychiatric sequelae - the caregiver of a person with a primary malignant brain tumor. The purpose of this article was to describe a conceptual framework for providing care for a person with a primary malignant brain tumor. The demands of this particular care situation are described, as well as potential resources available to the caregiver to meet those demands. Finally, the stress response that results from the balance between care demands and caregiver resources is illustrated. Development of a conceptual framework for this caregiving population is the first step in assisting nurses to identify factors that place caregivers of persons with a primary malignant brain tumor at risk for negative consequences, and to design interventions to improve caregiver health.

Findings showed a link between care recipients' problem behaviors and caregivers' depressive symptoms, a relationship that has not been well established in oncology. This association indicates one mechanism through which problem behaviors in the care recipient might lead to caregiver depressive symptoms.

Purpose Common data elements (CDEs) are increasingly being used by researchers to promote data sharing across studies. The purposes of this article are to (a) describe the theoretical, conceptual, and definition issues in the development of a set of CDEs for research addressing self-management of chronic conditions; (b) propose an initial set of CDEs and their measures to advance the science of self-management; and (c) recommend implications for future research and dissemination. Design and Methods Between July 2014 and December 2015 the directors of the National Institute of Nursing Research (NINR)-funded P20 and P30 centers of excellence and NINR staff met in a series of telephone calls and a face-to-face NINR-sponsored meeting to select a set of recommended CDEs to be used in self-management research. A list of potential CDEs was developed from examination of common constructs in current self-management frameworks, as well as identification of variables frequently used in studies conducted in the centers of excellence. Findings The recommended CDEs include measures of three self-management processes: activation, self-regulation, and self-efficacy for managing chronic conditions, and one measure of a self-management outcome, global health. Conclusions The self-management of chronic conditions, which encompasses a considerable number of processes, behaviors, and outcomes across a broad range of chronic conditions, presents several challenges in the identification of a parsimonious set of CDEs. This initial list of recommended CDEs for use in self-management research is provisional in that it is expected that over time it will be refined. Comment and recommended revisions are sought from the research and practice communities. Clinical Relevance The use of CDEs can facilitate generalizability of research findings across diverse population and interventions.

Addressing consumer needs requires the development of a valid means of specifically measuring pregnant women's satisfaction with prenatal care. This study's purpose was to develop items for, to pilot-test, and to examine the structural validity of the Patient Expectations and Satisfaction with Prenatal Care (PESPC) instrument. Extant literature and information obtained from focus groups were used in the development. The PESPC was pilot-tested with a sample of 114 pregnant women receiving prenatal care. To structurally validate the PESPC, data collected from 587 women who participated in a cross-sectional, self-administered survey were used. Structural equation modeling and confirmatory factor analysis were used to develop and cross-validate the PESPC. The PESPC was found to be structurally valid, and the subscales of Expectations and Satisfaction demonstrated acceptable levels of internal consistency.