Family adaptation in families of individuals with Down syndrome from 12 countries.

Our current understanding of adaptation in families of individuals with Down syndrome (DS) is based primarily on findings from studies focused on participants from a single country. Guided by the Resiliency Model of Family Stress, Adjustment, and Adaptation, the purpose of this cross-country investigation, which is part of a larger, mixed methods study, was twofold: (1) to compare family adaptation in 12 countries, and (2) to examine the relationships between family variables and family adaptation. The focus of this study is data collected in the 12 countries where at least 30 parents completed the survey. Descriptive statistics were generated, and mean family adaptation was modeled in terms of each predictor independently, controlling for an effect on covariates. A parsimonious composite model for mean family adaptation was adaptively generated. While there were cross-country differences, standardized family adaptation mean scores fell within the average range for all 12 countries. Key components of the guiding framework (i.e., family demands, family appraisal, family resources, and family problem-solving communication) were important predictors of family adaptation. More cross-country studies, as well as longitudinal studies, are needed to fully understand how culture and social determinants of health influence family adaptation in families of individuals with DS.

Where are the critical care nurses? A statewide analysis of actively practicing nurses' transitions out of the clinical area.

BACKGROUND: Critical care nurse shortages and burnout have spurred interest in the adequacy of nursing supply in the United States. Nurses can move between clinical areas without  additional education or licensure. PURPOSE: To identify transitions that critical care nurses make into non-critical care areas, and examine the prevalence and characteristics associated with those transitions. METHODS: Secondary analysis of state licensure data from 2001-2013. DISCUSSION: More than 75% of nurses (n = 8,408) left critical care in the state, with 44% making clinical area transitions within 5 years. Critical care nurses transitioned into emergency, peri-operative, and cardiology areas. Those observed in recession years were less likely to make transitions; female and nurses with masters/doctorate degrees were more likely. CONCLUSION: This study used state workforce data to examine transitions out of critical care nursing. Findings can inform policies to retain and recruit nurses back into critical care, especially during public health crises.

Methodological Considerations in Scale Refinement with Diverse Populations: A Case Example Using the CES-D with a Community Sample of American Indian Women.

Although many psychometric assessments are used extensively in population-based research to determine psychopathology, these tools have not been thoroughly validated or appropriately adapted for use in diverse populations. Indeed, depression measurement studies among American Indian and female populations are scarce, omitting key opportunities to tailor psychological measurement for this population. To build psychometric evidence of measures in this population, we used a procedural method to examine a standard psychological instrument-the Center for Epidemiological Studies Depression Scale (CES-D)-with a community sample of southeast American Indian women. Our results showed strong psychometric reliability of the 20-item CES-D. The "effort" item presented diminished validity, as demonstrated by a negative counter-intuitive item-to-total correlation (ITC) value. Dropping the "effort" item resulted in a 19-item scale with a better fit in the within-group examination of community-based American Indian women. Compared to the 20-item CES-D scale, the revised 19-item measure ("effort" item removed) resulted in minimal changes to women's depression categories. However, we did detect patterns in shifts such that the 19-item scale generally underestimated (i.e., placed women in a lower category) depressive symptoms compared to the 20-item scale. Depending on their study goals, researchers engaging in population-based research should carefully weigh the use of original scales that allow for consistency in reporting with refined scales that fit psychometrically. We present the outlined method as a tool that expands on current approaches in scale refinement, and aids researchers in making more informed decisions regarding refined scales with diverse populations.

Gaps in the Use of Long-Acting Opioids Within Intervals of Consecutive Days Among Cancer Outpatients Using Electronic Pill Caps.

OBJECTIVE: This study describes individual cancer patients' nonuse of extended-release or long-acting (ER/LA) opioids, including periods of gap between opioid doses taken. DESIGN: Secondary analysis of a three-month observational study of prescribed ER/LA opioids monitored using electronic pill caps. SETTING: Two outpatient oncology clinics of a large health system in the Mid-Atlantic region. PARTICIPANTS: Inclusion was based on self-identified African Americans and whites, at least 18 years old, diagnosed with solid tumors or multiple myeloma. For the current analysis, the additional inclusion criterion was prescription of an oral ER/LA opioid for cancer pain to be taken around the clock. METHODS: The electronic monitoring period for each study participant was partitioned into intervals of days between days with one or more openings (using medication event monitoring systems) representing rates of ER/LA opioid nonuse over consecutive days and over time. RESULTS: Of the sample (N = 109), two-thirds of the cancer patients had some nonuse of prescribed ER/LA opioids, with one in four having nonuse during 31.5-87.5% of their electronic-monitoring periods. Nonuse over periods of five or more, six or more, and seven or more consecutive days occurred for 37.6%, 34.9%, and 30.3% of the participants, respectively. CONCLUSIONS: About one in three ambulatory cancer patients in this study had substantial gaps between days of ER/LA opioid use, potentially resulting in risk of overdose depending upon the prescribed ER/LA opioid type, dose, and length of the time the opioid was stopped and resumed at the previous dose. This phenomenon has received little to no attention in the opioid safety discourse.

Quality of life in individuals with Down syndrome aged 4 to 21 years.

BACKGROUND: To date, investigations of quality of life (QoL) in children with Down syndrome (DS) are rather limited. The purpose of this study was twofold: to examine QoL in children with DS and to explore possible differences in the QoL by age and gender. METHODS: A cross-sectional study of 211 parents of children with DS was conducted using an online survey that included a consent form, a demographic questionnaire and the English version of KidsLife, which is a measure of children's QoL. RESULTS: Our results demonstrated moderate or favourable levels of QoL except for the emotional well-being domain among children with DS. The children's QoL showed no variance by gender. However, emotional and material well-being, interpersonal relations and social inclusion varied by age. CONCLUSIONS: The current findings provide important evidence that will help healthcare, educational and social services professionals to understand the multiple aspects of QoL in children with DS and support parents in their efforts to ensure the child's QoL. The results also point to the need to develop interventions aimed at improving QoL in those areas where children with DS are at increased risk for poorer QoL.

Mothers' and fathers' views of family management and health-related quality of life for young adult survivors of childhood brain tumors.

PURPOSE: To examine associations between fathers' and mothers' appraisals of family management and physical and emotional health-related quality of life (QOL) for young adult survivors of childhood brain tumors. DESIGN: Cross-sectional. SAMPLE: 47 mothers and 39 fathers (39-67 years old); 47 survivors (18-33 years old). METHODS: Analyses evaluated relationships among family management (Survivor's Daily Life, Condition Management Ability, Condition Management Effort, Family Life Difficulty, View of Condition Impact, Parental Mutuality), quality of life, and parental role. FINDINGS: Except for Parental Mutuality, family management ratings were not significantly different for mothers and fathers, and parental views of survivors' physical and emotional QOL improved with better family management. Parental role moderated associations between physical and emotional QOL and Survivors' Daily Life and between emotional QOL and Condition Management Ability, Condition Management Effort, and View of Condition Impact. IMPLICATIONS FOR PSYCHOSOCIAL PROVIDERS: Assess and address survivor QOL through family management from multiple perspectives.

Measurement of Family Management in Families of Individuals With Down Syndrome: A Cross-Cultural Investigation.

Down syndrome (DS) is the most common genetic cause of intellectual disability worldwide. The purpose of this analysis was to determine the internal consistency reliability of eight language versions of the Family Management Measure (FaMM) and compare family management of DS across cultures. A total of 2,740 parents of individuals with DS from 11 countries completed the FaMM. The analysis provided evidence of internal consistency reliability exceeding .70 for four of six FaMM scales for the entire sample. Across countries, there was a pattern of positive family management. Cross-cultural comparisons revealed parents from Brazil, Spain, and the United States had the most positive family management and respondents from Ireland, Italy, Japan, and Korea had the least positive. The rankings were mixed for the four remaining countries. These findings provide evidence of overall strong internal consistency reliability of the FaMM. More cross-cultural research is needed to understand how social determinants of health influence family management in families of individuals with DS.

Supporting the Dynamic Careers of Licensed Practical Nurses: A Strategy to Bolster the Long-Term Care Nurse Workforce.

As the U.S. population ages and the demand for long-term care increases, an insufficient number of licensed practical nurses (LPNs) is expected in the nursing workforce. Understanding the characteristics of LPN participation in the workforce is essential to address this challenge. Drawing on the theory of boundaryless careers, the authors examined longitudinal employment data from LPNs in North Carolina and described patterns in LPN licensure and career transitions. Two career patterns were identified: (a) the continuous career, in which LPNs were licensed in 75% or more of the years they were eligible to be licensed and (b) the intermittent career, in which lapses in licensure occurred. Findings indicated that LPNs who made job transitions were more likely to demonstrate continuous careers, as were Black LPNs. These findings suggest the importance of organizational support for LPN career transitions and support for diversity in the LPN workforce.

Communication Cues and Engagement Behavior: Identifying Advertisement Strategies to Attract Middle-Aged Adults to a Study of the Chronic Disease Self-Management Program.

INTRODUCTION: Low- and middle-income, middle-aged adults have high rates of disease and death from chronic disease, yet their participation in self-management programs is low. This may be because advertisements for such programs often target elderly, predominantly white, affluent adults. Our study used data from a parent randomized controlled trial to identify theoretically driven advertisement cues to engage low- and middle-income, middle-aged adults in the Chronic Disease Self-Management Program (CDSMP). METHODS: A framework that combined the Elaboration Likelihood Model and Protection Motivation Theory was used to guide χ2 and regression analyses to assess relationships between advertisement cue preferences and 5 stages of cognitive engagement (cue processing, cognitive appraisal of the advertised study, motivation to enroll) and behavioral engagement of study participants (enrollment and program participation). RESULTS: One advertisement cue (taking control of one's future) and 1 cue combination (financial security and taking control of one's future) were significantly associated with study enrollment, as were motivation to enroll and cue processing. CONCLUSION: These results can inform CDSMP recruitment efforts to better engage low- and middle-income, middle-aged adults in an effort to mitigate the disproportionate burden of chronic disease in this population.

Parent-Reported Contribution of Family Variables to the Quality of Life in Children with Down Syndrome: Report from an International Study.

PURPOSE: The intent of this study was to determine parents' views of the contribution of family variables to the quality of life (QoL) of children with Down Syndrome (DS). Based on prior research, we hypothesized that parents would report that family variables reflecting positive aspects of family functioning contributed to better QoL; and family variables reflecting the negative aspects of family functioning contributed to poorer QoL. DESIGN AND METHODS: A cross-sectional study was carried out. Invitation letters were sent to DS support groups. Upon agreement, the parents of the children were sent a link to an online survey that included a consent form, demographic questionnaire, and child and family measures. RESULTS: Results demonstrated the contribution of family demands to children's interpersonal relations. Family appraisals concerning the child and the family's ability predicted the children's physical and material well-being, personal development, self-determination, social inclusion, interpersonal relations, and rights. Family problem-solving served as a prominent predictor for children's physical and emotional well-being, personal development, interpersonal relations, and rights. Also, family resources predicted various aspects of children's QoL including physical, emotional, and material well-being, self-determination, social inclusion, interpersonal relations, and rights. CONCLUSION: Results confirmed the significant relationship between family and children's QoL variables. Family appraisal and family problem-solving were especially identified as significant predictors of children's QoL that can be targeted for family interventions, since the family variables are modifiable aspects of family life. PRACTICE IMPLICATIONS: Nurses can use current findings to develop interventions to enhance QoL of children with DS and families.

A community-engaged approach to investigate cardiovascular-associated inflammation among American Indian women: A research protocol.

American Indian women are more likely to die from cardiovascular disease (CVD) than White or African American women. Inflammatory processes may underlie CVD disparities by gender and race and may be critical to understanding population-specific drivers and potential buffers. Exposure to environmental air pollutants, especially particulate matter (PM), is known to be an important catalyst in CVD-associated inflammation. Positive psychological states, associated with low levels of inflammatory gene expression, could serve to moderate the inflammatory response to environmental air pollutants and ultimately lead to better cardiovascular health outcomes. The aim of the ongoing community-engaged and NIH-funded study described in this study protocol is to address the racial and gender gaps in CVD mortality by investigating the contextually relevant and culturally important determinants of health among American Indian women. In this paper we describe the procedures used to examine the relationship between environmental air pollutant exposures (PM10-2.5 and PM 2.5 ), psychological factors (e.g., depressive symptoms, posttraumatic stress symptoms, eudemonic well-being, and positive emotions), and cardiovascular-associated inflammation (hs-CRP, IL-6, Amyloid A, CBCs with differentials) in a sample of 150 women 18-50 years of age from the Lumbee Tribe in southeastern North Carolina. We describe lessons learned and strategies used in developing a community-engaged approach to enhance recruitment of American Indian women in biomedical research. The empirical data and community infrastructure resulting from this study will be foundational in designing and testing future interventions to reduce CVD-associated morbidity and mortality in American Indian women.

Family management of childhood chronic conditions: Does it make a difference if the child has an intellectual disability?

The purpose of this analysis was to assess the applicability of the Family Management Measure (FaMM) to families in which there was a child with an intellectual disability versus a chronic condition. Drawing on data from 571 parents of children with a chronic physical condition and 539 parents of children with Down syndrome, we compared the two groups across the six FaMM scales. After accounting for the covariate effects of race, ethnicity, family income, and child age, we found significant differences in four of the six FaMM scales, with parents of children with Down syndrome reporting a significantly more positive view on the Condition Management Effort and View of Condition Impact scales and a significantly less positive view on the Child's Daily Life and Condition Management Ability scales than parents of children with a chronic physical condition. There were no significant differences between groups on the Family Life Difficulty and the Parental Mutuality scales. The analysis provided evidence of the applicability of the FaMM for studying families in which there is a child with Down syndrome and its utility in identifying the common and unique challenges of family management between the groups.

Health Beliefs and Medication Adherence in Omanis With Hypertension.

BACKGROUND: Patients' health beliefs are essential to improve medication adherence among patients with hypertension. OBJECTIVE: Our objective was to examine the relationship between (1) patients' beliefs about hypertension, medication, and self-efficacy and medication adherence and (2) medication adherence and blood pressure control in Oman. METHODS: This cross-sectional study included 215 participants with hypertension. Participants completed 4 questionnaires (Arabic version) to measure medication adherence, beliefs about hypertension severity, beliefs about medication, and self-efficacy. Bivariate and multivariate logistic regression was used to conduct the analyses. RESULTS: Higher self-efficacy (odds ratio [OR], 2.59; 95% confidence interval [CI], 1.54-4.37), stronger beliefs about medication necessity (OR, 1.98; 95% CI, 1.21-3.23), increased age (OR, 1.06; 95% CI, 1.03-1.10), and fewer medication concerns (OR, 0.34; 95% CI, 0.20-0.57) were related to high medication adherence. Moreover, uncontrolled blood pressure was less likely in participants with high medication adherence (OR, 0.47; 95% CI, 0.24-0.93). CONCLUSIONS: Patients' beliefs are important consideration to improve medication adherence. Clinically, patients' beliefs should be assessed, and strategies to improve medication adherence should incorporate beliefs as a key component to improve antihypertensive medication adherence. Patient education and counseling regarding hypertension and necessity and side effects of medications are important to maximize positive beliefs and improve medication adherence.

An untapped resource in the nursing workforce: Licensed practical nurses who transition to become registered nurses.

BACKGROUND: A more diverse registered nurse (RN) workforce is needed to provide health care in North Carolina (NC) and nationally. Studies describing licensed practical nurse (LPN) career transitions to RNs are lacking. PURPOSE: To characterize the occurrence of LPN-to-RN professional transitions; compare key characteristics of LPNs who do and do not make such a transition; and compare key characteristics of LPNs who do transition in the years prior to and following their transition. METHODS: A retrospective design was conducted using licensure data on LPNs from 2001 to 2013. Cohorts were constructed based on year of graduation. FINDINGS: Of 39,398 LPNs in NC between 2001 and 2013, there were 3,161 LPNs (8.0%) who had a LPN-to-RN career transition between 2001 and 2013. LPNs were more likely to transition to RN if they were male; from Asian, American Indian, or other racial groups; held an associate or baccalaureate degree in their last year as an LPN (or their last year in the study if they did not transition); worked in a hospital inpatient setting; worked in the medical-surgical nursing specialty; and were from a rural area. DISCUSSION: Our findings indicate that the odds of an LPN-to-RN transition were greater if LPNs were: male; from all other racial groups except white; of a younger age at their first LPN licensure; working in a hospital setting; working in the specialty of medical-surgical nursing; employed part-time; or working in a rural setting during the last year as an LPN. CONCLUSION: This study fills an important gap in our knowledge of LPN-to-RN transitions. Policy efforts are needed to incentivize: LPNs to make a LPN-to-RN transition; educational entities to create and communicate curricular pathways; and employers to support LPNs in making the transition.

Incorporating nonlinearity into mediation analyses.

BACKGROUND: Mediation is an important issue considered in the behavioral, medical, and social sciences. It addresses situations where the effect of a predictor variable X on an outcome variable Y is explained to some extent by an intervening, mediator variable M. Methods for addressing mediation have been available for some time. While these methods continue to undergo refinement, the relationships underlying mediation are commonly treated as linear in the outcome Y, the predictor X, and the mediator M. These relationships, however, can be nonlinear. Methods are needed for assessing when mediation relationships can be treated as linear and for estimating them when they are nonlinear. METHODS: Existing adaptive regression methods based on fractional polynomials are extended here to address nonlinearity in mediation relationships, but assuming those relationships are monotonic as would be consistent with theories about directionality of such relationships. RESULTS: Example monotonic mediation analyses are provided assessing linear and monotonic mediation of the effect of family functioning (X) on a child's adaptation (Y) to a chronic condition by the difficulty (M) for the family in managing the child's condition. Example moderated monotonic mediation and simulation analyses are also presented. CONCLUSIONS: Adaptive methods provide an effective way to incorporate possibly nonlinear monotonicity into mediation relationships.

Heart Rate Variability as a Feeding Intervention Outcome Measure in the Preterm Infant.

BACKGROUND: Feeding interventions for preterm infants aim to reduce the physiologic stress of feeding to promote growth. Heart rate variability (HRV) is a potential noninvasive measure of physiologic stress that may be useful for evaluating efficacy of feeding interventions. PURPOSE: To evaluate whether HRV is a sensitive measure of physiologic stress compared with standard physiologic outcomes in the context of a feeding intervention study. METHODS: This was a secondary analysis of a within-subjects, cross-over design study comparing usual care feeding with a gentle, coregulated (CoReg) feeding approach in 14 infants born less than 35 weeks' postmenstrual age. HRV indices were calculated from electrocardiogram data and compared with standard physiologic outcomes, including oxygen saturation (Spo2), respiratory rate (RR), apnea, heart rate (HR), and bradycardia. Data were analyzed using linear mixed modeling. RESULTS: Infants fed using the CoReg approach had fewer apneic events and higher RR, suggesting they were able to breathe more during feeding. No statistically significant differences were found in SpO2, HR, bradycardia, or high frequency power (the most commonly reported measure of HRV). Infants fed using the usual care approach had significantly higher SD12, a measure of HRV indicating randomness in the HR, which is a potential indicator of elevated stress. IMPLICATIONS FOR PRACTICE: SD12 was more sensitive to stress than SpO2, HR, and bradycardia. The utility of HRV as a measure of feeding outcomes in clinical practice needs further exploration. IMPLICATIONS FOR RESEARCH: Further exploration of HRV as an intervention outcome measure is needed, particularly evaluating nonlinear indices, such as SD12.

Relationships Between Nurse Staffing and Patients' Experiences, and the Mediating Effects of Missed Nursing Care.

PURPOSE: The aims of this study were to examine the relationships between nurse staffing and patients' experiences, and to determine the mediating effects of patient-reported missed care on the relationship between nurse staffing and patients' experiences. DESIGN: The study included 362 nurses and 208 patients from 23 nursing units of six hospitals in South Korea. METHODS: Nurse staffing was measured by patient-to-nurse ratios and by nurse- and patient-perceived staffing adequacy. Patients' experiences included adverse events, communication with nurses, and overall hospital rating. Patient-reported missed care was measured using the MISSCARE Survey-Patient with three domains: communication, basic care, and timely response. FINDINGS: Lower nurse-perceived staffing adequacy was associated with more patient-reported missed communication. Lower patient-perceived staffing adequacy was associated with more missed care and adverse events, and a lower likelihood of experiencing good communication with nurses and of giving a high overall rating to the hospital. Patient-reported missed care mediated the relationship between nurse staffing and patients' experiences. CONCLUSIONS: Nurse staffing adequacy, particularly as perceived by patients, was significantly associated with patient-reported missed communication and basic care, as well as patients' experiences. CLINICAL RELEVANCE: Appropriate nurse staffing is required to reduce missed care and to improve patients' experiences.

Effects of milk flow on the physiological and behavioural responses to feeding in an infant with hypoplastic left heart syndrome.

Infants with hypoplastic left heart syndrome often experience difficulty with oral feeding, which contributes to growth failure, morbidity, and mortality. In response to feeding difficulty, clinicians often change the bottle nipple, and thus milk flow rate. Slow-flow nipples have been found to reduce the stress of feeding in other fragile infants, but no research has evaluated the responses of infants with hypoplastic left heart syndrome to alterations in milk flow. The purpose of this study was to evaluate the physiological and behavioural responses of an infant with hypoplastic left heart syndrome to bottle feeding with either a slow-flow (Dr. Brown's Preemie) or a standard-flow (Dr. Brown's Level 2) nipple. A single infant was studied for three feedings: two slow-flow and one standard-flow. Oral feeding, whether with a slow-flow or a standard-flow nipple, was distressing for this infant. During slow-flow feeding, she experienced more coughing events, whereas during standard-flow she experienced more gagging. Disengagement and compelling disorganisation were most common during feeding 3, that is slow-flow, which occurred 2 days after surgical placement of a gastrostomy tube. Clinically significant changes in heart rate, oxygen saturation, and respiratory rate were seen during all feedings. Heart rate was higher during standard-flow and respiratory rate was higher during slow-flow. Further research is needed to examine the responses of infants with hypoplastic left heart syndrome to oral feeding and to identify strategies that will support these fragile infants as they learn to feed. Future research should evaluate an even slower-flow nipple along with additional supportive feeding strategies.

Adaptive Modeling: An Approach for Incorporating Nonlinearity in Regression Analyses.

Although regression relationships commonly are treated as linear, this often is not the case. An adaptive approach is described for identifying nonlinear relationships based on power transforms of predictor (or independent) variables and for assessing whether or not relationships are distinctly nonlinear. It is also possible to model adaptively both means and variances of continuous outcome (or dependent) variables and to adaptively power transform positive-valued continuous outcomes, along with their predictors. Example analyses are provided of data from parents in a nursing study on emotional-health-related quality of life for childhood brain tumor survivors as a function of the effort to manage the survivors' condition. These analyses demonstrate that relationships, including moderation relationships, can be distinctly nonlinear, that conclusions about means can be affected by accounting for non-constant variances, and that outcome transformation along with predictor transformation can provide distinct improvements and can resolve skewness problems.© 2017 Wiley Periodicals, Inc.

Pain and psychological well-being among people with dementia in long-term care.

OBJECTIVE: To examine the relationship between self-reported pain and psychological well-being of people with dementia (PWD) living in residential long-term care as indicated by displays of observed emotional expression over the daytime period. DESIGN: Secondary analysis using repeated measures of self-report and observational data. SETTING AND SUBJECTS: A total of 177 PWD were included from 17 nursing homes and six assisted living facilities in Michigan and Pennsylvania. METHODS: Negative emotional expression was used as an indicator of reduced psychological well-being. Pain was assessed through PWD's response to a question about presence of pain obtained at each observation. Cognitive impairment was assessed using the Mini-Mental Status Examination. Linear mixed models were used that accounted for correlation of negative emotional expression measurements over time for each participant and between participants within the same facility. RESULTS: Among 171 participants who were able to express their pain, 44% of PWD reported pain once or more during the daytime period. Severity of cognitive impairment was related to expression of negative emotion. PWD with pain displayed more negative emotional expression than PWD without pain. CONCLUSIONS: Routine pain assessment is feasible among PWD with moderate to severe dementia and positive report of pain is associated with greater observed negative emotional expression, an indicator of reduced psychological well-being. Improving pain management holds potential for enhancing psychological well-being among PWD living in residential long-term care.