Influence of social support on asthma self-management in adolescents.

OBJECTIVE: Adolescents with asthma are influenced by peers and family. The objective was to better understand family social support and test its association with medication adherence, asthma control, and Emergency Department (ED) use. METHODS: This study is a cross-sectional secondary data analysis from a randomized controlled trial with urban adolescents from three U.S. cities. Participants (12-20 years old) with asthma completed the Perceived Family Support Scale (PFS) and Horne's Medication Adherence Report Scale (MARS). Data from both tools were classified into 2 categories- high and low (< 25th percentile) perceived family support and high (total score >10) and low medication adherence, respectively. Chi-square statistic and logistic regression were used for analysis. RESULTS: Of the 371 participants, the majority were young (96% ≤ 17 years), African American or Bi-racial (85%), and Medicaid-insured (72%); over one-third had maternal family history of asthma. Among those on a controller medication (n = 270), only 37% reported its use ≥8 days over 2 weeks. Asthma control was poor with 50% categorized "not well controlled," 34% "very poorly controlled." Participants responded positively to most social support items. One item, providing and receiving social support to and from family members, was less often positively reported. Low medication adherence was significantly associated with lower perceived social support (p = 0.018). CONCLUSION: This study underscores the importance of family social support in understanding the extent of adolescents' self-management, particularly medication adherence.

Enhanced access to healthcare utilization data through medical record review: Lessons learned from a community-based, multi-site project.

Collecting accurate healthcare utilization (HCU) data on community-based interventions is essential to establishing their clinical effectiveness and cost-related impact. Strategies used to enhance receiving medical records for HCU data extraction in a multi-site longitudinal randomized control trial with urban adolescents are presented. Successful strategies included timely assessment of procedures and practice preferences for access to electronic health records and hardcopy medical charts. Repeated outreach to clinical practice sites to identify and accommodate their preferred procedure for medical record release and flexibility in obtaining chart information helped achieve a 75% success rate in this study. Maintaining participant contact, updating provider information, and continuously evaluating site-specific personnel needs are recommended.

Health-Related Quality of Life of Children with Congenital Adrenal Hyperplasia: A Mixed Methods Study.

PURPOSE: The purpose of this study was to examine the health-related quality of life (HRQOL) of female children with CAH as reported by children and their caregivers. DESIGN AND METHODS: A convergent mixed methods design was selected whereby quantitative and qualitative results were merged to provide a comprehensive understanding of HRQOL of children. Semi-structured interviews were conducted with 20 child-caregiver dyads. The full sample of child-caregiver dyads (N = 25) completed KINDL-R questionnaires, which provided a quantitative measure of children's HRQOL. RESULTS: Children and their caregivers reported good overall HRQOL. Children scored significantly lower on the KINDL-R School subscale compared to their caregivers. Associations were observed between the HRQOL score from one graphic rating scale item and the child's other health issues and child's diagnosis. Themes emerging from the child and caregiver interviews were health-related quality of life, impact of stigma on psychological well-being, information-sharing and disclosure of CAH, and improving the quality of life of children with CAH. CONCLUSION: This mixed methods study provided evidence to understand the health and complex needs of children with CAH. IMPLICATIONS: Clinicians may better support children and caregivers by expanding the focus beyond medication management to include: 1) psychological support and resources (i.e., developmentally appropriate coping and adaptation strategies); 2) continuous education for clinical staff, school nurses, emergency medical transport staff, and providers; and 3) public awareness beyond the clinic and hospital settings.

Living with an invisible illness: a qualitative study exploring the lived experiences of female children with congenital adrenal hyperplasia.

PURPOSE: Many chronic illnesses are self-evident. However, disorders like congenital adrenal hyperplasia (CAH) are invisible to the naked eye and unnoticeable to others. Therefore, invisible illness is often a shared, misconstrued experience for children with CAH, their caregivers, and the medical community. This experience, along with its lack of awareness and added stigma, may impact overall quality of life (QOL) of such individuals. To facilitate our understanding of QOL of children with CAH, we must first explore their subjective experiences. This study aimed to capture their lived experiences and provide recommendations to support children with CAH. METHODS: We conducted semi-structured interviews with 20 female children with CAH between 7 and 18 years and their caregivers. Interviews were transcribed verbatim, checked for accuracy, and independently coded by the first and second author. Content analysis was used to organize data so that codes could be condensed into categories and themes. Differences around code, category, and theme description were reconciled. RESULTS: Participants' experiences were described in five themes: (1) Making sense of the situation; (2) Emotional and psychological impact of an invisible illness; (3) Normalcy; (4) Disclosure of diagnosis; and (5) Improving the care of children with CAH CONCLUSION: Exploring children's views about living with an invisible illness illuminated individual aspects contributing to our in-depth understanding of experiences of children with CAH. Ongoing education and awareness of CAH is necessary to help mitigate the stigma associated with living with CAH.

Fidelity of a peer-led asthma self-management intervention and its attention control in a multisite study of urban adolescents.

In this paper we compare the fidelity of a Peer-Led Asthma Self-Management Program for Adolescents (PLASMA) and its attention control. A randomized controlled trial involving two groups-the PLASMA group and the attention control group-was conducted between 2015 and 2018. Adolescents 12-17 years old (N = 259) in three cities in the United States received asthma self-management education implemented at a day camp, followed by bi-monthly, follow-up contact for 12 months. Thirty-five peer leaders and six adult educators implemented education sessions for the PLASMA and the attention control groups, respectively. The intervention was the peer-led delivery of the content instead of the educational content itself. This study compares the extent to which the education sessions and follow-up contacts were implemented in accordance with the study protocol by the peer and adult educators. Most topics on asthma knowledge and skills (85-95%) were delivered as intended at an adequate pace in both groups. Peer leaders missed more content in the psychosocial domain than adult educators-14% versus 0%, respectively (t = -3.7; p = .010). PLASMA participants reported high content and time fidelity for all education sessions (94% to 97.6%). Greater success in bimonthly follow-up contacts was reported in the attention control groups, with 4.6 ( ± 1.5) contacts on average compared to 2.6 (±2.02) in the PLASMA groups (t = 9.02; p < .001). Most components of the asthma self-management program were implemented with high fidelity in both groups. The relatively low fidelity in delivering psychosocial content and performing follow-up contacts in the PLASMA groups underscores the need for intensive training to enhance peer leaders' competency with managing these aspects of PLASMA to maximize fidelity. Peer leaders can implement asthma self-management educational components of the intervention with high fidelity similar to adult educators.

Recruitment and retention strategies for an urban adolescent study: Lessons learned from a multi-center study of community-based asthma self-management intervention for adolescents.

Intervention studies with urban adolescents and families affected by asthma are critical to improving the disproportionate morbidity in this population. Community-based recruitment and retention strategies in a multi-site longitudinal project evaluating an asthma self-management intervention for adolescents are presented. Successful recruitment strategies depended on the geographic and cultural characteristics of each study site. Partnering with providers and groups known to the target population and in-person contact with target population were found effective. Flexibility accommodating modified and new approaches, securing multiple contacts and repeating mailings as well as capitalizing on the benefits of subject payment was critical to achieving long-term subject engagement of 85% in the study. Ongoing monitoring and adjustment of recruitment and retention strategies is recommended.

Psychometric evaluation of the nursing child assessment teaching (NCAT) scale in a community-based sample.

The effect of the mother-child relationship on long-term child development has received research attention for decades. Because the quality and quantity of mother-infant interactions have been established as important predictors of the child's development, early identification of areas in the relationship requiring support and intervention is essential for promoting positive child outcomes. The Nursing Child Assessment Teaching Scale (NCAT) is an instrument long used to quantify the quality of interaction in the mother-child relationship during the first 36 months of a child's life. While the NCAT has been shown to be a reliable and valid instrument, limited evidence exists of the theoretical congruence between the Barnard Model it is based on and the NCAT scale. The psychometric properties of the NCAT scale and subscales were examined using item response theory in relation to characteristics of interactions in the Barnard Model using data collected during a clinic visit at 12 months of infant age in a sample of mothers and children (N = 1,121 dyads) from a community-based sample in Shelby County, TN. In this secondary analysis, descriptive statistics, reliabilities, and factor loadings for the NCAT were obtained using confirmatory factor analysis and augmented to form multiple indicators, multiple causes models, linking demographic predictors of the mothers and children to the NCAT subscales. Results supported scale abbreviation and theoretical congruence with the Barnard Model, which may provide researchers and practitioners with a more concise, reliable way of measuring maternal-child interaction in community settings.

Quality of Life and African American Women Who are Family Caregivers: A Literature Review with Implications for Psychiatric Mental Health Advanced Practice Registered Nurses.

PURPOSE: To identify factors affecting the quality of life (QOL) of African American women (AAW) family caregivers of individuals with kidney failure. METHODS: Ferrans' Conceptual Model of QOL provided the framework for this literature review. Included studies were (a) peer- reviewed, (b) published within the last ten years, (c) written in English, and (d) examined QOL of AAW family caregivers. Using CINAHL© and PubMed©, we found 14 studies that described factors associated with these caregivers' QOL. SCOPE: Few studies document the QOL of AAW who are family caregivers, especially in the context of kidney failure. Psychiatric Mental Health Advanced Practice Registered Nurses need to learn about the factors influencing the QOL of these caregivers. RESULTS: No studies were found within the last ten years that explored the QOL of AAW family caregivers of individuals with kidney failure. Findings reflected the QOL of AAW family caregivers in the context of other chronic conditions. Various factors such as stress, insomnia, and employment were linked to an impaired QOL. Implications for practice, research and education for PMH-APRNs are suggested. CONCLUSION: PMH-APRNs are uniquely trained to address many factors that affect the QOL of these caregivers and may provide holistic care aimed at promoting satisfactory QOL for these caregivers.

Male Caregivers of Persons with End Stage Renal Disease: A Qualitative Study.

This study explored experiences associated with burden, depressive symptoms, and perceived health in six male caregivers of persons with end stage renal disease (ESRD) using qualitative interviews. Analysis employed open coding and analysis to generate codes and categories. Eighty-three percent of the participants reported significant subjective and objective burden. Linkages occurred between sociodemographic characteristics, care recipient attributes, and caregiver-care recipient relationship, and caregivers' experience of burden and depressive symptoms. Findings suggest the need for intervention trials targeting new coping strategies to help improve the well-being of this population.

An Interprofessional Virtual Healthcare Neighborhood: Effect on Self-Efficacy and Sleep Among Caregivers of Older Adults With Dementia.

An Interprofessional Virtual Healthcare Neighborhood (VHN) was designed to deliver information, peer support, and professional guidance to caregivers of individuals with dementia. The VHN was also enhanced with an actigraphy band to monitor caregivers' sleep. The study sample comprised two groups (N = 28): caregivers participating in the VHN and those receiving usual care. Measures of sleep quality and quantity, using an actigraphy band; general self-efficacy, using the General Self-Efficacy Scale; and insomnia, using the Insomnia Severity Index, were measured pre- and postintervention for the intervention and comparison groups. Neither group reported significant changes in sleep quality or quantity over time. Insomnia severity decreased for both groups. Self-efficacy became worse for the comparison group, yet remained virtually unchanged for the intervention group. Overall, the current study also showed an effective use of technology to reach homebound caregivers of older adults with dementia. [Journal of Gerontological Nursing, 42(11), 39-47.].

Male Caregivers of Persons with End Stage Renal Disease: A Literature Review.

This literature review examined burden, depressive symptoms, and perceived health reported by male caregivers of persons with end stage renal disease. These studies suggest that male caregivers often experience negative outcomes. Compared to non-caregivers, male caregivers had higher levels of anxiety and depressive symptoms. Qualitative studies suggest depression is common and associated with conflict between caregiving responsibilities and work, poor caregiver health, and fears about the future outcomes of relatives for whom they provide care. Future research will assist healthcare providers to identify at-risk male caregivers and develop effective interventions to support this understudied caregiver population.

Recruitment of older African American males for depression research: lessons learned.

Depression is projected to become the leading cause of disability and the second leading contributor to the global burden of disease in approximately 10years. Few studies have explored the signs and symptoms of depression experienced by older African American men. Therefore, a pilot study was developed with the goal of addressing this gap in knowledge. Despite a variety of recruitment strategies, the study yielded no participants after 9months of effort. Lessons learned from the recruitment efforts and other researchers' successful techniques and strategies are discussed.

Clinical utility of inflammatory and genetic biomarkers for cardiovascular disease prevention, categorization, and treatment.

ABSTRACT: The complex interplay of increased atherogenic lipoproteins, inflammation, and immune activation hallmarks the pathogenesis of atherosclerotic cardiovascular disease (ASCVD). Atherosclerotic cardiovascular disease remains a leading cause of death, yet risk estimator tools lack comprehensiveness for genetic/inflammatory biomarkers associated with ASCVD. Unexplained ASCVD risk necessitates a better understanding of primary, secondary, and tertiary prevention variables. This article discusses the clinical utility of genetic and inflammatory biomarkers for ASCVD risk prediction, management, treatment, and recategorization into primary, secondary, and tertiary prevention. Furthermore, nurse practitioners (NPs) should use a ternary prevention classification system instead of the current binary system to mitigate risk in the large group of patients with subclinical ASCVD. High-sensitivity C-reactive protein (hs-CRP)-linearly associated with ASCVD-and lipoprotein-associated phospholipase-A 2 (Lp-PLA 2 ) and myeloperoxidase (MPO), both associated with plaque vulnerability/rupture, are inflammatory biomarkers. Elevated hs-CRP, MPO, and Lp-PLA 2 treatment requires addressing root causes of elevation (e.g., obesity, insulin resistance, tobacco use, gingival disease, and chronic autoimmune/infectious conditions). In addition, haptoglobin (Hp) phenotype determines the antioxidant potential of Hp. Haptoglobin phenotype, a root cause of ASCVD, is a one-time test. Individuals with Hp 2-2 should adopt a gluten-free diet to reduce endothelial and intestinal inflammation. Nurse practitioners should use stricter glycemic goals (hemoglobin A1c ≤6.5%) and add daily vitamin E if this group has type 2 diabetes. Genetic/inflammatory biomarkers should be used to better predict ASCVD risk and tailor primary, secondary, and tertiary prevention treatment. Clinical use of these biomarkers reaches beyond the standard of care to reduce residual ASCVD risk.

Characterizing dietary intake and physical activity affecting weight gain in kidney transplant recipients.

CONTEXT: Weight gain after kidney transplantation affects 50% to 90% of kidney transplant recipients. Factors leading to weight gain in recipients are thought to include a change in lifestyle (eg, dietary intake and physical activity), age, race, sex, and immunosuppressant medications. OBJECTIVE: To examine dietary intake and physical activity of kidney transplant recipients at baseline and 3 and 6 months after transplantation to identify contributing factors to weight gain. DESIGN: Descriptive, correlational study using secondary data from a larger parent study examining genetic and environmental contributors to weight gain after kidney transplantation. PARTICIPANTS AND SETTING: Forty-four kidney transplant recipients at a mid-South university hospital-based transplant institute who had dietary intake, physical activity, and clinical data at baseline and 3 and 6 months were included. MAIN OUTCOME MEASURES: Dietary intake, physical activity, weight, and body mass index. RESULTS: Mean weight gain increased by 6% from baseline to 6 months. Interestingly, dietary intake did not change significantly from baseline to 6 months. Hours of sleep per day decreased during the same period (P = .02). Dietary intake, physical activity, age, race, sex, and immunosuppression showed no significant relationship to weight gain at 6 months. CONCLUSION: Little consideration has been given to dietary intake and physical activity of kidney transplant recipients and the effects of these variables on weight gain. Further studies with a larger sample are needed, as weight gain after transplantation is a significant risk factor for diminished long-term outcomes.

Religiosity, self-efficacy for exercise, and African American women.

Physical inactivity among African American women persists despite health promotion efforts targeting this population. In the African American faith community, thinking patterns related to personal versus divine control over health status could affect self-efficacy beliefs and physical activity behavior. Religiosity, a determinate of self-efficacy for exercise, is influenced by culture. This exploratory pilot study assessed the psychometric properties and relevance of selected study instruments and relationships among the study variables in African American women recruited through a rural church. Findings indicated a trend toward significance among study variables and that the God Locus of Health Control and Physical Exercise Self-Efficacy Scales were reliable for capturing attitudes about ability to engage in physical activity and religiosity in this sample. Six of the twenty-five women recruited failed to complete the Stanford Brief Activity Survey for Work and Leisure Time Activity correctly, suggesting the need to revise instructions prior to future instrument administration.

Journey to a new era: An innovative academic-practice partnership.

Successful academic-clinical partnerships are mutually beneficial for academic nursing and clinical organizations, supporting the long-term success of nursing programs while simultaneously improving patient outcomes. Advocated by the American Association of Colleges of Nursing in their 2016 report, Advancing Healthcare Transformation: New Era for Academic Nursing, this position paper provides six actions for transforming academic nursing. However, developing sustainable academic-practice models has proven challenging despite this roadmap, as research has not substantiated their benefits. This article describes an innovative academic-practice model that transitioned advanced practice registered nurses practicing at Le Bonheur Children's Hospital to full-time faculty, with a continued primary clinical practice role, in the College of Nursing at the University of Tennessee Health Science Center. We present the origin, development, and implementation of this academic-practice partnership model, offering recommendations for its replication by other universities and clinical agencies on this journey. Creating a sustainable model requires a shared vision, buy-in at all levels, frequent and transparent communication, planning that considers the individual policies of the partnering agencies, and persistence despite leadership changes. Two years into the partnership and remaining intact despite critical leadership changes within the clinical agency, the next phase of the relationship will permit us to document the model's impact on academic and clinical outcomes.

Family Caregivers' Experience of Patients With Delirium in Critical Care Units: A State-of-the-Science Integrative Review.

BACKGROUND: Delirium as a sudden cognitive and behavioral change can be traumatic for family caregivers. An understanding of family caregivers' experiences with delirium in their loved one in an intensive care unit (ICU) will help clinicians provide family-centered care. OBJECTIVE: To explore the impact of delirium on, and the needs of, family caregivers of ICU patients with delirium. METHODS: A comprehensive search was done of literature in the PubMed, CINAHL, and Scopus databases published from 2000 to 2020. Primary studies written in English and done in critical care settings were included. Studies that did not focus on the family experience of delirium were excluded. Additional studies were identified by reviewing the reference lists of selected articles. Evidence was synthesized, and common themes were identified. RESULTS: Among 210 studies, 7 were included after irrelevant and duplicate studies had been removed. Findings were categorized as (1) psychological impacts of a patient's delirium on family caregivers and (2) family caregivers' needs. Common psychological impacts included anxiety, depression, concern, fear, anger, uncertainty, shock, insecurity, and disappointment. Family caregivers reported needing informational and emotional support from, and effective communication with, health care professionals. CONCLUSIONS: Family caregivers' health is crucial to ensuring the effectiveness of family engagement in delirium management. Future studies should consider family caregiver characteristics that could be used to predict psychological symptoms when caregivers are exposed to a patient's delirium and explore whether specific types of delirium cause more psychological impacts and needs among family caregivers than other types of delirium cause.